Entrevue inspirante sur la sensibilisation à la fibromyalgie au Canada avec Trudy Flynn //S2-E031

Tu peux me rejoindre ici 👇

Hébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.

Transcription

Speaker #0
Bonjour tout le monde qui nous écoute ou qui nous regarde. Je veux vous dire qu'aujourd'hui, j'ai vraiment une personne super, je vais dire, compétente et aussi encourageante qui s'appelle Madame Trudy Flynn. Elle est, c'est elle qui a parti dans le fond la fibromyalgie, l'association de fibromyalgie au Canada. Donc, maintenant, elle parle seulement en anglais. Donc, on va passer de l'anglais au français, mais inquiétez-vous pas. Vous allez pouvoir lire les... You can read it with the reading if you don't understand English. And you can also watch it visually. So it will be translated. All the subtitles will be translated into French. So I'm going to switch to English. Hello Trudy. Welcome to my podcast, which is called Fibromyalgie Autrement. It's like fibromyalgie otherwise. which I mean, you're going to choose to live your life another way than the typical road. Okay, so Trudy.
Speaker #1
Yes, thank you, Anne, for inviting me.
Speaker #0
It's my pleasure, really. I want to say that I have known you now for maybe a couple of months, and I'm always in awe when we meet for our committee reunions because you're such a... From inspiration. So my first question for you is as chair of Fibromyalgia Association, which you have, I want to say, a wonderful page on. internet well not a page it's it's really your site your whole site and it is translated not everything but most in french so for people listening um that you're french you can go in french or in english and i mean i even send my clients on that page because you have information that i don't have time to write on my blog or on my my internet site so it's a beautiful thing so let me ask you to explain to us what what is like FAC, because that's the acronym, right?
Speaker #1
Yes, it is. Excuse me. So Fibromyalgia Association Canada, or FAC, is the national association for people with fibromyalgia. It is run by people with fibromyalgia, for people with fibromyalgia, totally volunteer. No one gets paid, so it's totally a volunteer organization. And we are trying to raise awareness and help people with fibromyalgia right across Canada.
Speaker #0
You said something very interesting here that just like slided. But everybody that's working on this committee or the organization or whatever place, it's people that have fibromyalgia. They live with it daily.
Speaker #1
Yes. And on some of the committees, we do have people who are caregivers or support people for. husbands, wives, children with fibromyalgia, but our board is all people with fibromyalgia. So the organization is led by people with fibromyalgia, but if people want to volunteer on the committees and they have experience or have someone in their lives with fibromyalgia, we're open to that.
Speaker #0
I find that so, so encouraging. Maybe I need to explain why, but when you suffer with fibromyalgia, going to see somebody or getting information from somebody that knows the facts, but doesn't live the problem, it's sort of like not the same thing. I don't know if you feel that way, but...
Speaker #1
Oh, I totally feel that way. It really is. It's one of those, you have no idea until you walk in our shoes, right?
Speaker #0
Yes, and especially since most of the time we both don't look like women that have fibromyalgia, but it doesn't mean that we're not living it. Yes, I agree. I read something, which I should have. Yeah, right here it says, it's a quote on a book that I wrote that I bought for fibromyalgia awareness, and it says, most people fake being sick, I fake being well.
Speaker #1
Yes, totally. And we actually had that on one of our newsletters that we put out last year. We had that because it's an invisible illness. And unless you have it, you look at people and think you look fine to me. And I get a lot of that because I run. And so I have a lot of pushback on that saying, you know, you don't look sick. You couldn't run if you had fibromyalgia. My thoughts about that is I hurt when I run, I hurt when I don't run. But truthfully, while I'm running is the only time I'm pain-free. So I hurt before, I hurt after. and I'm going to do that anyway, hurt before and hurt after, so I might as well enjoy it.
Speaker #0
Yeah, and you know what? I'm listening to you, Trudy, and I'm thinking right in my mind as a naturopath, well, this is where information is needed because when you run, you're producing something called oxytocin, which gives a pleasure moment to your brain. So, of course, we're not feeling the pain, but I used to run. Now I walk. But... I do feel the pain. I did feel the pain. And I still do, even when I'm walking, feel the pain once I stop. Because then that oxytocin decreases and all of your hormones and your pain system is still there working very hard to let you know something's wrong. So maybe education is a lot of what we do. Well, on one of the committees where I'm on with you. But I want to know why did you started this for awareness? how long has this been going? Is it fairly new, or I just found you like a couple of months ago?
Speaker #1
Yes, Fac is three years old.
Speaker #0
Okay.
Speaker #1
And it's interesting because how it all got started was Janice Sumpton, who's on the education committee with you, and she co-chairs the research committee with me and is also a board member. She sent me an article that was published on the Nova Scotia government website, which is where I live, and she asked me if I was aware of it. and I wasn't. So it basically said that it's a psychiatric illness, and if we all had CBT, we'd all be well. So I was quite upset that the government website had that on it. So I started contacting people, trying to get help with getting it off the website. And then I realized there's nobody out there representing fibromyalgia. It's always an add-on to another condition. So ME and fibromyalgia, arthritis and fibromyalgia, but nothing for just people with fibromyalgia. Personally, that's what I have, fibromyalgia. I don't have arthritis. I don't have ME. So, um, As coincidence have it, somebody contacted me and asked me if I would do a talk on their support group for May 12th, Fibromyalgia Awareness Day. And I did, and we got talking, and we talked about the fact there's no national group for fibromyalgia. And so we got about 15 people together and like-minded individuals who were interested in this. And that's when we formed FAT. and some of those people have come and gone because, you know, they've either had interest in other places, but they were there to get it started, and then we developed into, so there was a steering committee first, and then we developed into a board and carried on from there, and that's how it all started.
Speaker #0
Well, I, for one, am very, very glad because I just find that
Speaker #1
Well,
Speaker #0
it's so important to get the good information out. There is a lot of information about fibromyalgia. There are a lot of groups of people that proclaim or start a group on Facebook and want to help people. I'm not sure everything that's going on in there is really like fact-based, you know. This is what's really happening. Like you said, you know, some people are calling it a problem in your head. Well, it is partly true, but not all true. It does always to your brain, it does. But it doesn't make you like, okay, I've got a cuckoo's nest, something is wrong. Or I heard recently also somebody say, well, you can have fibromyalgia and not be depressed. Well, that's certainly not true because I'm not a depressed person and I've never been. I've had hard moments, but that is just not how my mind is wired. So all this information and all the, you know, I've also seen like people on Facebook or Instagram doing little reels and saying, oh, take this pill and it's gone. I must restrain myself when I see that because this is all hopeless information and money down the drain. But I know that with fact. well, we're getting, you know, the real stuff. And some stuff might be harder than others to swallow, but that is just how it is. Fact says it, and I know you believe it, and I know it's true because I've lived it. Once your fibromyalgia is declared and your doctors really say, okay, this is what you have, it doesn't go away. It's something like goes to sleep sometimes.
Speaker #1
Yes, I've been in remission. There are times when I've been in remission, what I call remission. Mm-hmm. But then something happens and... You know, you get an infection, viruses are a big trigger for me. And so then it's back, right? And it rears its ugly head. I have never thought that I was cured. While I was in that remission, I was very well aware that it was lurking in the background. And, you know, all I had to do was something different, have an allergic reaction. I have a lot of allergies. anything like that triggers it back up again. So yes, there is no cure for fibromyalgia. Mm-hmm. And about the psychiatric issues. it is, there are things in our head that are happening with fibromyalgia, but we do not have, it's not a psychiatric condition. And you don't, depression certainly doesn't cause fibromyalgia. And a lot of people with fibromyalgia do get depressed. When you're told you have a chronic condition that you have to put up with for the rest of your life, it's painful, causes exhaustion and brain fog. there's no treatment and they have no idea what causes it. Of course, some people get depressed. That's just a natural reaction to living with a chronic disease, especially an invisible chronic disease.
Speaker #0
I love your explanation. Thank you for that. And it is true. that it is hard at times, harder sometimes it gets better. That's part of living with fibromyalgia, as you just said. I was six years with no symptoms at all. So I, for the first time since I was very young, thought, I'm healed. I have heard other people talk about that, so I was like, yes. And I said that the week I said that, the next week I was in the hospital. and my hair was falling out like I had I was almost bald I had to stay there for two weeks and when I came out I had a specialist just for me for like four years and that that's where I really understood six years this was sleeping cells in my body but you know it's like your body recognizes and you everything in your body so once it sees it you can't hide it so it just happened i had accumulated and then something happened big in my life and bam i went like from going this to like whoa so i know it is in sometimes the feeling you we want to believe that it can be cured. But I'm teaching people that I work with, try to believe that it can be. You can learn to live with this illness and even sometimes say it's a hidden blessing, right? Yes. Because it keeps us from always going overboard. If you're a person like me, you're always running and doing everything. So, fibromyalgia picks up every morning and says, well, you're tired, what are you going to do, right?
Speaker #1
Interestingly, my daughter's had fibromyalgia since she was eight. So she doesn't really remember life before fibromyalgia. So she accepts it a lot better than I do because I still remember life before fibromyalgia, even though it's been a long time, like 30 years. But she interestingly said to me one time when I said, if you had one wish and you could be cured, of something, you know, because we have a lot of allergies, asthma, a few things like that. I said, would you pick fibromyalgia? I mean, if you had one wish in the world, is that what you'd pick? I want to be cured. And she said, no, surprisingly. Excuse me. which really surprised me. And she said, I don't remember life before it, and it's made me who I am, and I like who I am, so why would I want to be cured? And I thought, I'm pretty sure there's not many people out there who would say that.
Speaker #0
Well, I can understand how she came to that, because although I wasn't diagnosed young, I suffered all... I think I've been suffering since I was born, actually. Not exaggerating. At five years old, I was always crying. I had stomach aches. My mother would comb my hair, and I would scream, and she'd get mad, and she'd say, I'm not even touching your hair. I couldn't... This, I can, like... do now. It's a, I think it's the first time that I can tie my hair more than like an hour. really so that is just fibromyalgia and i had some i had really bad symptoms i especially started noticing when i first started my how do you say that men's monster menstruation menstruation yes okay uh because i had another immune disease i didn't know i but i had endometriosis which really hurts but when you have fibro you and endometriosis. That is, I was like, I couldn't go to school for the whole week I was in my periods and things like that. But I kept, doctor kept telling my mother that nothing was wrong with me. It was in my head. So we're going far back. It took a long time for me to, and I got my autoimmune disease diagnostic before fibromyalgia.
Speaker #1
But yes.
Speaker #0
you know, I'm like, that's the age I am. I mean, maybe I'm hoping it goes faster for people that go to the doctor. Do you have an insight on that? You know, for the... Well,
Speaker #1
interestingly, my grandson has fibromyalgia and he was like you. He started having pain when he was around five and his doctor kept telling him it was growing pains. He's 17 now, almost 18 next week. And his doctor still and he's six foot three. So he's 17. Yeah. Like I said. So for 12 years, almost 13 years. He's been. Suffering from this and not able to get a diagnosis. So I got the 2016 diagnostic criteria, which is on FACS website. And so if you're having a problem getting diagnosed, that's a good criteria to take to your doctor. but his doctor wouldn't even look at it. And she said to him, I don't want to label you. And I said to his mother, it's not a label. It's a diagnosis. It's not a label. Fibromyalgia is not a label. And so as a result, I would just finish there. Yeah. So we're having Dr. Christine Lamontagne in on May the 9th to discuss juvenile fibromyalgia because it's so very difficult to get children diagnosed. It's this growing pain thing that they hear over and over and over again.
Speaker #0
Truly, that is so interesting because... it just made me think of one of my grandsons here. And yeah, I'm going to have his mama listen to that. And me, I will listen because, you know, if we go back a couple of years. we were having trouble, adults, to be diagnostic. I'm thinking, okay, we're like 30-something years down the road, and you're still not wanting to give it. You're calling it a label? I don't think you do that with somebody that has diabetes, you know?
Speaker #1
No.
Speaker #0
I can't tell you you're diabetic because I'm going to label you. I'm just going to let you have insulin problems. It's crazy. I'm giving myself thumbs up. This is like crazy for me in 2024. So hopefully people are going to go. Like you say, I think we need to educate the people that think they have it, those that have it also, to bring back to reality what's true and what's false, and giving them, like you do, information to take back to their doctor. But maybe the next step would be let's help them talk to his doctor. I love to say to my clients, your doctor works for you. so get them get them to do what you're asking i want to see a rheumatologist that's it just give me the paper and i've done that with a few clients and they say but it worked it worked because that's what they're paid to do you don't want to okay fine give me a paper to go see another doctor because we need to teach them to take control of their their yes them their health because you As I can see from what you're saying, not much has changed.
Speaker #1
No, not much has. Now, my daughter was diagnosed very easily because the doctor she saw had fibromyalgia himself. And that's why it was not a struggle for me or her to be diagnosed. But, I mean, that's few and far between, right? So we were just lucky. And talking to your doctor is very important. That's something you're on the advocacy committee as well. And that's something we want to do on the advocacy committee is how to talk to your doctor. And I really like what you said when you said your doctor works for you. Oh, he does. We really need to get that across to people.
Speaker #0
especially here in Canada, when you're going with your card, you're paying him, you're paying him and you're paying him a lot. So please, you only have 10 minutes. Fine. I'm here. I'm ready. This, this, this is what I have. This is what it says. Please fill in this and do what you have to do. Get me diagnosed because I know it's this or I have a feeling, you know, you got to do it in a way you're not telling him what to do or her, but you're, you're driving them. there and I did not accept a no from my daughter when I went not my daughter but my doctor when I went to see him for something specific about my hormones I was like ready and I said I won't accept a no I remember his face and he says I'm here for help and you took my card before I came so please give me the help I need. As simple as that, you know, and it's something that we're afraid to do because he knows or she knows much more than us, but when we give them the good information, I mean, you go to your doctor and you have knowledge about your disease, you have knowledge about where you should go to get the help, you're just helping him along. We have some doctors that will say, oh, fine, I'll give you everything you want, go. That's perfect. That's perfect. But not they're not all that easy, right?
Speaker #1
But do you know, they're not more educated than we are, because we are the experts in fibromyalgia, they are not the experts in fibromyalgia, they probably get about 20 minute discussion in med school about chronic pain, which may or may not mention fibromyalgia. And I always say we are not chronic pain, we are fall under that. umbrella, but we're different than chronic pain because we have other major symptoms. You know, if you had an injured shoulder, and you have chronic pain, you can go to a physiotherapist, a chiropractor, whoever, and they take care of that shoulder. If I go to my doctor and say, I have a sore shoulder, by the time he's written me a prescription for the physiotherapist, it's in my hip. So how do you treat pain like that when it constantly moves around? So it makes us very different than the the chronic pain community. And yeah, it's very important. Fibromyalgia is not a diagnosis of exclusion. It's actually a diagnosis of inclusion on that 2016 diagnostic criteria. It tells you exactly what to look for. So it's not that you have to send us to cardiology, endocrinology. hematology, all those places, you as a family doctor can diagnose fibromyalgia just by using that criteria.
Speaker #0
Yeah, it is.
Speaker #1
And they don't.
Speaker #0
Well, I know that for sure you're right about they are knowledge on what they learned. And let's face it, I know from going to school that everything I learned in my two and a half years to be a naturopath. I'm sure that there's like more than half that I don't remember. So I have to open up my books. And doctors can't do that every time you go and you sit in front of him and you say something about your shoulder or having pain and sensations of burning on your body and they brush it away. It's much easier. Not all, but some. But I have learned recently for my own life and for what I'm teaching my clients is you have to be your best advocate and learn and learn and learn. So when you get a discussion with someone and they start telling you things, you don't just accept this as the truth. You'll know what's real and you can speak up for yourself and say, no, that's wrong. Like, you know, you look tired today. Maybe you should go to bed. do you have something like more encouraging like can i help you because you seem really tired today so i think it's harder for you right just like not letting people put all sorts of how you say that stickers on you of uh this is what yes yeah so in fibromyalgia month awareness this is where we are right now all of month of may you are doing that and i see purple behind you so can you tell me what what's going on with the purple
Speaker #1
Well, May is Fibromyalgia Awareness Month and May 12th is Fibromyalgia Awareness Day. So one of the things we're doing at FAC is an illumination campaign. So we approach buildings and landmarks across Canada asking them to light in purple. For Fibromyalgia Awareness Day and Month. This year, Fibromyalgia Day is on Sunday, so a lot of places found it hard to light on Sunday. So we just said it doesn't matter, you can light anytime during the month, and we'll include you. And we have over 165 buildings and landmarks across Canada lighting for awareness, and we really appreciate that. I mean, it helps bring us to the forefront. People say, why are you lighting in purple today? And so then they get educated, right? And we also have a lot that are doing proclamations declaring May 12th as Fibromyalgia Awareness Day in their town, city, province, which is really great.
Speaker #0
So what do they do with this proclamation? Can you explain? I know it's on the website in French and in English, I think.
Speaker #1
Yes. And they mail us or some, most of them send us the proclamation and they actually stand up in their, I'll say this in English, their legislature, legislative assembly or their province house or whatever they call it across Canada. And they, MPs, MPPs, NLAs. declare May 12th as Fibromyalgia Awareness Day in whatever province you're in and or whatever town you live in so I live in Halifax and it's been declared in council meetings that May 12th will be Fibromyalgia Awareness Day in Halifax so and then they also light for us which is great.
Speaker #0
Yes, well you know It's like putting up a flag, your color. This is us. Do you see us? Because you don't see us, but we're there.
Speaker #1
You know, the first year we did it, I went into the city. I live outside the city, but I went into the city and City Hall was lit up and the Nova Scotia Legislature Province House was lit up and so was the Lieutenant Governor's residence was lit up. And I cried. It was so... emotional for me that look at this they are lighting for us that I just cry yeah so that year we only we had not only we had 90 people light up and this year we have over 165 so it's
Speaker #0
building that's that's proof that all your work is is finally getting some exposure which is I mean one of the reasons I wanted to invite you because when I found you I like okay you I've been living all my life with fibromyalgia. How come I didn't know this existed? And there is an association in French for the French people. It's just that I love the fact that it's wider than just Quebec. I love that we have one in French also, but fibromyalgia is worldwide and there's a lot of people in Canada. So let's not just say I stay isolated in our provinces like in Canada. Well. you reach a lot more people.
Speaker #1
Yeah, so.
Speaker #0
It's very, anyway, I was blown away at, how come I had not seen you? I know I've said it three times. That's like, we've been talking about fibromyalgia for like six years now, so. you still need to talk about it.
Speaker #1
Yes, definitely. And raise awareness. Do you know there's over 2 million people in Canada have fibromyalgia? And those are only the ones diagnosed. And those are older statistics, right? I bet if Statistics Canada did a survey now in 2024, they'd find the numbers were much higher. Oh, I'm sure. And they don't even count people. So if your primary diagnosis is cardiac, and you also have fibromyalgia. Fibromyalgia is not considered. You're a cardiac patient. You're not a fibromyalgia patient. So over 2 million people with just fibromyalgia.
Speaker #0
and not just fibromyalgia, because we have so many comorbidities go along with fibromyalgia. I have allergies. IBS is something that goes along with it. Migraines goes along with it. And so it's never just fibromyalgia. It's a rare person that just has fibromyalgia.
Speaker #1
I've not heard more yet.
Speaker #0
And at one time, I was, or at least I thought I was. And then when I started realizing how many symptoms there are for people with fibromyalgia, I started thinking, well, no wonder I have migraines. They started around the same time that my fibromyalgia did. So it's interesting because the more people you talk to, the more you realize that they're. all those symptoms out there. So we actually are going to be this month as well, posting symptoms. And on our website, we're going to be posting, it's mental health month as well. And mental health is really important to people with fibromyalgia, taking care of yourself, looking after your mental health. So we'll be posting about that as well. We're going to post some myths that... break the myths so people understand this is a myth this is the fact so and and we're also doing some how to take care of yourself self-care tips during the month as well so it's about raising awareness it's about educating it's about advocacy it's just making sure people understand what fibromyalgia really is and how much it change changes your life I had to stop working.
Speaker #1
Let's talk about that.
Speaker #0
It changes your life. My life changed when my fibromyalgia got bad enough. Like I said, I was a nurse.
Speaker #1
Well, you don't have to say the age if you don't want, but how many years ago maybe?
Speaker #0
So. I had fibromyalgia and I had what I thought was under control and then I didn't, right? And so...
Speaker #1
So to place tricks on you like that.
Speaker #0
Yeah. So the early 2000s, I had to leave work. I was a nurse. There was a mold exposure at my hospital and that triggered it. Plus I had an injury. I worked on a dementia floor and I had a patient kind of. throw me across the room and I never really recovered from that so yeah and I mean that to me was devastating um just my social life was my co-workers and so to have to leave work was very very difficult so well that's a big finances right everything yeah yeah yes
Speaker #1
that's one part that we don't discuss when we talk about fibromyalgia like I'm a naturopathic that's what I do. I help women that have fibromyalgia. And sometimes I can only like take one or two clients per month. Well, I have colleagues that are doing this and they have about four or five, six a day. I can't, I can't, that's too much energy for me. And I, I now. at 60 something years old have realized that oh you need to keep this energy or you won't look tough long you know I'll have to shut down everything so sometimes I like I feel like why am I doing it well because it's still keeping me doing something I love and most of all my mission like probably FAC's mission is to help people give them information and where I found that like we sort of work together in a way, is that many people can do it on their own. Many people can go to like, see everything that's on pack and they can do it. They can change their life. I was one of those. But then there are people that need you to help them move along, give them the hope they need and get them going. And then after that, you're off. I always work like that. Like, you know, I don't keep you for six months or one year. What I want to do is make you able to walk on your own two feet and go. And you need me in like a month, call me, we'll see. And then, you know, you might need me once every year. That's it. But I want to educate people. especially, well, everybody, I mean, women or men can listen to me. I'm talking about fibromyalgia, so it does not have a sex nor age, right? No. But I find that we, like, it's a beautiful thing to have people doing it one-on-one, and then you also need the information that is accurate outside of that to help each other balance because, I mean, there's so much you just said. 2 million people in Canada? That's a lot of people.
Speaker #0
Yes, it is.
Speaker #1
That need help.
Speaker #0
Interesting that you mentioned age because, well, first of all, you don't look 60-something. And second of all was something that bothers me is when research studies put an age on things. And I understand why they have an age of 18 or 19. I understand that because they'd have to go through. the hassle of having my nurse parents consent, but I do not understand why they cut it off at 55, 60, 65.
Speaker #1
And it's like,
Speaker #0
do you think that once you get 65, you're cured or what? And I asked researchers.
Speaker #1
You're not interesting anymore.
Speaker #0
Well, I've asked researchers why they do that. And they tell me it's because over the age of 65, you develop other health conditions. And I'm thinking, how do you know that? How do you know that? I know lots of people over the age of 65 that don't have any other health conditions. So that's judging. And you're missing out on an entire population because you should be looking at how are people over the age of 65 coping with their fibromyalgia as they age. That would be great research.
Speaker #1
That would be beautiful research. And you're totally right because I had a client not long ago. she's over 70. She's just been declared with fibromyalgia and she does not know what to do. And this is like overwhelming for her. So she's one of my clients. And I'm thinking, yeah, what do you do? You know, at a certain age, you really need specific age, which is different than a 20 year old. And it might not be as easy to get that information, you know. So I'm thinking absolutely that it's a bit weird that they would stop at 65 because a lot of people, as they age, everybody's developing a disease in their life at any time. I mean, it's like your habits of living, the way you live, what you eat, what you think, what you do, all of this involves getting all sorts of diseases. So it's not a question of age. It's more a question of... what's going on in your life, right? And this stuff is going on in your life from childbirth to death.
Speaker #0
Yes, exactly. I agree. And, and I, I'm hoping that fact can help promote that, that you shouldn't be stopping the research at 65 that, you know, you need to research what's going on in people as they age and take care of people over 65. If there's no research out there on how fibromyalgia affects you as you age. how are doctors going to be able to help you as you age with this condition?
Speaker #1
It's also sending out the message, okay, I have fibromyalgia. I'm going to be 62, I think. That's a fibromyalgia problem I really love, forgetting my age. Anyway, when I get to 65, does this mean I can't get any more help?
Speaker #0
No, it doesn't mean you can't get any more help. But not specifically. You can't participate in research studies.
Speaker #1
But I think we, as we get older, we're good research. Because the pain is different. You've got all these other symptoms, like you were told, that can influence the pain. And how does that influence your fibromyalgia?
Speaker #0
Exactly. Exactly.
Speaker #1
So I'm thinking that's a no-brainer.
Speaker #0
We'll have to work on that together, Anne, because I see it as a real problem.
Speaker #1
Well, for me, when I heard you say that, I said, oh, my goodness. So I'm no good to research anymore. So my life is going to be like, okay, I'm just going to have to eat.
Speaker #0
You've got three years to get all that research, all those surveys done.
Speaker #1
You know what? Because when you're too young. At first, we weren't looking at kids with fibromyalgia. We're just starting to do that now. Yes. And to help, we're going to cut it up at 65 because, well. Yes. But my fibro won't stop at 55. So if I have a really big problem with my health, you can imagine my fibromyalgia, right? It's going to blow up.
Speaker #0
And there won't be any research out there to help you on someone who's a certain age. It's kind of like when we were doing advocacy for Bill C-22, which was the Canada Disability Benefit. It was the same thing. If you look, they're only interested in working people. Once you turn 65, it's like you're no longer disabled. They're not going to help you after you turn 65. And I don't know about most people realize, and I've had people tell me this, that once you turn 65, they lose their disability benefits, workman's compensation, and then they have to live on just old age security and Canada pension plan, Quebec pension plan. And it's a real drop in income that they were actually making more on disability. And the government's... 65, that's it. You don't get any help. Not that what they're giving is very much help, $200 a month, if not exactly. That's what that Canada disability, supposed to bring people out of poverty, disabled people out of poverty. You're not going to do that with $200 a month.
Speaker #1
No.
Speaker #0
When I heard that in the federal budget, I felt sick because I thought, wow, all the work we did fighting for this. Yes, it is there. But you're not going to bring people out of poverty with $200 a month.
Speaker #1
And I think, you know, according to whatever else their life is, hasn't $200 is... I don't know how long you can eat on $200 nowadays,
Speaker #0
right? Yes. Yeah.
Speaker #1
So anyway.
Speaker #0
And provincial disabilities, it was supposed to be a top-up for provincial disabilities, but I don't know about any place else. In Nova Scotia, that's $800 a month. That's what disabled people get in Nova Scotia. So $200 is going to bring you up to $1,000. And multiply that by $12, and that's $12,000. a year, which is well below the poverty line of 25,000, 27,000, depending where you live. That's well below the poverty line.
Speaker #1
I feel like adding that, okay, that's the government and they have no idea what these people are living. So, you know, they're just throwing that out there because they've got to put numbers and put a stop or something. And they're not treating them as human beings.
Speaker #0
So once again, FAC is trying to, you know, do some advocacy around that and help.
Speaker #1
So you're working, well, you and everybody else are working very hard. But I mean, you being chair with the other people. are probably the ones that start these mandates and let's go forward. So if you're not there on the community, we're not going to do much. So we need you. I hope you're not planning to retire.
Speaker #0
I know. And, you know, just like you said, it keeps me going. It keeps me so I don't get depressed. It keeps me from feeling like I'm. not worth anything because I have this condition. So volunteering is very, very good for your mental health. So I encourage anyone who wants to volunteer, just go to the FACT website and we certainly can use volunteers. We can especially use translators since I'm talking to Quebec. That's right. We can definitely use translators because we'd like to have everything in French.
Speaker #1
of course you know we have two translators so it makes that difficult to keep up so it was definitely not a lot yeah so you yeah well we'll get that out there because i mean if someone listening to us has learned from your this podcast or from your website well they should speak to them because i mean where are you getting the good information you I don't think it's from the doctor. You might get a little bit, but... Have you thought of giving your information of what you do to send that out to many doctors?
Speaker #0
Yes, we have, actually. And we're trying to figure out how to get them to listen. So there is... excuse me, something called Echo. And it's, it's like a portal for a webinar kind of, but, and it's Dr. Andrea Furlan does one on chronic pain. And so she invites doctors to come there, present their cases, everybody talks about them, and then they go away with all this information. And I, we would like to set one up for fibromyalgia. So we did some researching and it's about $350,000 to set one up for two years to teach across Canada. So, of course, we don't have that kind of money, but we're hoping that someday we will get that. And in the meantime, we're posting. We have a professional section on our website, so we're posting there.
Speaker #1
And what is the professional section?
Speaker #0
Doctors, physiotherapists, occupational therapists, so information, research that we have that they can use and access. But also, we're talking about how to get the information out to... the GPs across the country. And so we're hoping to work with the College of Physicians and Surgeons across Canada and hoping that they will, if we give them information, they will send it along to all their doctors. But, you know, like it's common for people not to read their email. So you only reach the people that really want to be reached, right?
Speaker #1
and I'm thinking like I don't know I'm thinking of me when I'm going to go see my doctor next week I could talk to him about it right there in the office and leave him something like hey this would be good because I mean he works I think 80% of his clientele is fibromyalgia you could die my doctor is the one who told me I want you to go study and help people because I cannot do what you're doing so yeah
Speaker #0
I appreciate what you're doing. But you could go in the website and download the criteria and take it. And that's what everybody could do. You could download the criteria, print it off, and take it into your doctor's office and say, this is from Fibromyalgia Association Canada, and this is how you make a diagnosis of fibromyalgia. researched it's proven this is the criteria accepted by the everyone across Canada and the United States for that matter so it's uh yeah and I think we should all be doing more of that actually printing off information and taking it to your doctor yeah that was one of the main reasons well of course I talk about fibromyalgia everywhere I think people are starting to know that you
Speaker #1
not only because I live with it, because now I know what I can do to get a better life, more vitality, eat in a certain way to help my gut, to prevent allergies, to prevent IBS and all that. And it's working. And it works on my clients. So I'm like, hey, we get good news there. So I think we should start telling people about what we just talked about in this paper and go download it and bring it and give it you know, if you're having to get the word out there that you can get this information right there for free.
Speaker #0
Yes.
Speaker #1
That's nothing. And it can change your life if you have a difficult doctor or a doctor that is not really listening, you know, about what it is or doesn't. rubs it off like, oh, well, it's normal type pain. It's humid.
Speaker #0
Yes, and it's not.
Speaker #1
Really? I say, really? So are you hurting as much as me today? No, I don't hurt. Okay.
Speaker #0
That's my role. It's interesting. My husband is very, very supportive. And we were doing something one day, physical work, and the next day he was so sore. And he said to me, are you as sore as I am? And I said. honey, I'm this sore every day.
Speaker #1
Exactly. Exactly. I know what you mean. Yeah, if I had an episode like that, my husband got really sick and he had a big migraine. And he said, I suffered chronic migraines from the age of 13, I think, to 30-something. I was on big pills and vomiting, not, you know, in the bed. I have no more migraines. I've not had a migraine since I don't know how many years. Wow. That was part of fibromyalgia when I was very, very young also. Yes. And my husband had a migraine after this health thing, a big migraine. And he was like almost crying. And I'm like, does it hurt? And I'm all empathetic. Because I can understand. He says, I don't know how you lived through this. he could remember me vomiting and him picking me up and getting me in bed because I couldn't look in my eyes. And he says, I don't know how you lived with this. I can't even stand this. And you're talking and it's hurting. And I said, well, that's my world.
Speaker #0
Yes.
Speaker #1
Sometimes it's intense. Sometimes it's less. And I do appreciate every time it's less. And when it's up, I'm saying, okay, it's time to relax. time to relax that's what my body's telling me right oh truly i could talk again and again with you we'll have to do a second one For sure.
Speaker #0
You know something talking about that, what I eat affects me. And I know you know that because you're a naturopath, but I don't know if a lot of people realize that what they eat affects their pain. And that's why we had Dr. Furlan in March talking about nutrition and fibromyalgia, which her talk is on our YouTube channel. But it is very, very true that your symptoms are very much affected by what you eat.
Speaker #1
Yes. It just, well, you have to understand how the digestive system works and all that. And once you understand that, okay, I've got these cells in my body that don't like this food and they're like going a bit crazy, then inflammation starts. And, you know, I don't have it here. Oh, I brought it. Where did I bring it? Give me a second. I want to show her book. Yes, I got it. I will be interviewing her in a few days. This is the book we are talking about. I am reading it and I love it. I love it. I love her work. I love that she's taking the time to talk about fibromyalgia. She could have chosen any other kind of... illness, right? But she said, nope, I'm going with this. So that should have, I will be asking her that, but she must have a lot of clients that have fibromyalgia.
Speaker #0
Yes, but she does specialize actually in chronic pain. But I think she has this interest in fibromyalgia. She is a wonderful, wonderful asset to Fibromyalgia Association Canada. If we have something we'd like her to talk about, she's there with bells on. You know, she's just has been a great support right from when we started.
Speaker #1
So that's great.
Speaker #0
She's been very good. She has a survey out, actually. Yes, I will go over.
Speaker #1
I saw that yesterday.
Speaker #0
Yeah. And so if any of your audience, she's looking to get, she has a certain number of participants she'd like to have. So if it is on FAC's website under our research section. And research participants want it if you, if anybody wants to take part in it, it's a good survey.
Speaker #1
Okay, I have it right in front of me. Let me show it. I think I can do that. Share screen. I want to share this one. So people that are looking can see it. So this is Dr. Furlan. Furlan.
Speaker #0
So if you click on the research section on our website there. Yeah.
Speaker #1
Research. Whoops.
Speaker #0
So if you go down the page a little bit, it'll say research participants wanted.
Speaker #1
Research causes... Oh, yeah, I got it.
Speaker #0
So if you click on there, you will see her study. That's her current research study that she's doing, and she needs participants for that study.
Speaker #1
Okay, so I would sign up here.
Speaker #0
Yes, you would.
Speaker #1
Whoops, that went wrong. So let me take that off. So I think it... Hmm, hmm, hmm. Now, I don't know how to get rid of this. Arrete. Just read. Just read. So, thank you so much. And I'm glad that she's doing that survey. I saw it yesterday. And I said, okay, I got to come back and just... I think they're looking for how much we know about information.
Speaker #0
Yes.
Speaker #1
Okay.
Speaker #0
Yes, they are. I'm looking. My name changed.
Speaker #1
Your name changed. Well, it's Trudy. Yeah,
Speaker #0
I'll put it back there.
Speaker #1
Sorry about that. I made you disappear. No,
Speaker #0
that's okay. Yes, so she's doing that research, and we're helping her spread the word so that more people do the survey. Because it's like all researchers, especially when it's survey type of research. If they don't get enough participants... it's very difficult for them to do the research.
Speaker #1
Yes, and I'm not sure, maybe you know this, but when you have a research, if you have like four or ten participants, it's not as, you know, there's not enough information there to get a good... Okay, so I'm right?
Speaker #0
Yes, you are.
Speaker #1
A couple of more. The more that you have, I mean, I think the bigger your... The information level would be to be able to make this.
Speaker #0
So it's more beneficial to have 100 or more research people. participants because then there's no, so if you have five people and we all had the same problem, the reason, you know, you wouldn't get any much benefit out of that. So the more you have, the more valuable your research is.
Speaker #1
I'm going to make it a part of my mission to make that circulate on my websites and things like that so people can go and do it. Is it only in English? Just asking.
Speaker #0
I believe so. Okay. I believe so.
Speaker #1
But I think now you can put everything like translated so they could write. Okay. Well, this was wonderful. And thank you so much, Trudy, for being here.
Speaker #0
It was great talking to you.
Speaker #1
Yes, I love it. So I might invite you again.
Speaker #0
Oh, thank you. It was great to meet with you. Yes,
Speaker #1
thank you. And I hope everybody really takes advantage of this. podcast because they need to know who you are so i'm just gonna thank you bye i'm trying to

About Fibromyalgie autrement !

Bienvenue au podcast "La fibromyalgie autrement" !

Un espace dédié aux femmes de 40 ans et plus qui vivent avec la fibromyalgie et souhaitent découvrir une façon différente de vivre avec cette condition.

Je m’appelle Anne L Beaulieu, et je suis votre hôte. En tant que naturopathe diplômée, experte culinaire nutritionnelle, spécialiste en alimentation anti-inflammatoire, coach certifiée AIP, accompagnatrice certifiée en fibromyalgie et coach certifiée FLAG, ma mission est de vous offrir des outils concrets pour mieux vivre au quotidien.

Mon objectif avec ce podcast est de vous transmettre des informations utiles et inspirantes pour vivre la fibromyalgie autrement. À travers des exemples tirés de mon expérience personnelle et de celle de mes clientes (noms fictifs), je vous parlerai de ce qui compte vraiment : des réalités qu’on hésite souvent à exprimer à voix haute, jusqu’à l’importance de ce qu’on met dans notre assiette. Cuisiner, c’est ma passion, et cela joue un rôle clé dans mon mieux-être.

Diagnostiquée fibromyalgique en 2001 après des années d’errance médicale, je comprends profondément ce que vous vivez. Chaque semaine, je partagerai avec vous des conseils pratiques, des astuces, et des fragments de mon parcours pour vous guider vers une vie plus alignée avec vos besoins.

Les épisodes, d’une durée de 15 à 30 minutes, seront publiés deux fois par semaine. Lors des épisodes en solo, je serai là pour discuter directement avec vous, comme une amie qui vous parle à l’oreille.

Merci de me rejoindre dans cette aventure. Ensemble, découvrons comment vivre la fibromyalgie… autrement. 💜

Hébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.

About Fibromyalgie autrement !

Bienvenue au podcast "La fibromyalgie autrement" !

Un espace dédié aux femmes de 40 ans et plus qui vivent avec la fibromyalgie et souhaitent découvrir une façon différente de vivre avec cette condition.

Merci de me rejoindre dans cette aventure. Ensemble, découvrons comment vivre la fibromyalgie… autrement. 💜

Hébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.

Description

Bonjour !

Aujourd’hui dans le podcast 🎙️Fibromyalgie Autrement, 💜 l'entrevue concerne Madame Trudy Flynn, présidente de l’Association Fibromyalgie Canada, AFC ou FAC en anglais.

L’épisode de cette semaine est en anglais, mais la vidéo sera bientôt disponible sur ma chaîne YouTube avec des sous-titres en français. Voici le lien - YouTube

Nous discutons de plusieurs sujets tels que :

La sensibilisation à la maladie ;
Les préjugés auxquels les personnes sont confrontées ;
Les défis ;
Les recherches ;
L’impact de l’alimentation sur la fibromyalgie ;
Et bien plus encore!

Bonne écoute 🎧 💜

Voici comment rejoindre l'AFC 👇

Tu peux me rejoindre ici 👇

Hébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.

Transcription

Speaker #0
Bonjour tout le monde qui nous écoute ou qui nous regarde. Je veux vous dire qu'aujourd'hui, j'ai vraiment une personne super, je vais dire, compétente et aussi encourageante qui s'appelle Madame Trudy Flynn. Elle est, c'est elle qui a parti dans le fond la fibromyalgie, l'association de fibromyalgie au Canada. Donc, maintenant, elle parle seulement en anglais. Donc, on va passer de l'anglais au français, mais inquiétez-vous pas. Vous allez pouvoir lire les... You can read it with the reading if you don't understand English. And you can also watch it visually. So it will be translated. All the subtitles will be translated into French. So I'm going to switch to English. Hello Trudy. Welcome to my podcast, which is called Fibromyalgie Autrement. It's like fibromyalgie otherwise. which I mean, you're going to choose to live your life another way than the typical road. Okay, so Trudy.
Speaker #1
Yes, thank you, Anne, for inviting me.
Speaker #0
It's my pleasure, really. I want to say that I have known you now for maybe a couple of months, and I'm always in awe when we meet for our committee reunions because you're such a... From inspiration. So my first question for you is as chair of Fibromyalgia Association, which you have, I want to say, a wonderful page on. internet well not a page it's it's really your site your whole site and it is translated not everything but most in french so for people listening um that you're french you can go in french or in english and i mean i even send my clients on that page because you have information that i don't have time to write on my blog or on my my internet site so it's a beautiful thing so let me ask you to explain to us what what is like FAC, because that's the acronym, right?
Speaker #1
Yes, it is. Excuse me. So Fibromyalgia Association Canada, or FAC, is the national association for people with fibromyalgia. It is run by people with fibromyalgia, for people with fibromyalgia, totally volunteer. No one gets paid, so it's totally a volunteer organization. And we are trying to raise awareness and help people with fibromyalgia right across Canada.
Speaker #0
You said something very interesting here that just like slided. But everybody that's working on this committee or the organization or whatever place, it's people that have fibromyalgia. They live with it daily.
Speaker #1
Yes. And on some of the committees, we do have people who are caregivers or support people for. husbands, wives, children with fibromyalgia, but our board is all people with fibromyalgia. So the organization is led by people with fibromyalgia, but if people want to volunteer on the committees and they have experience or have someone in their lives with fibromyalgia, we're open to that.
Speaker #0
I find that so, so encouraging. Maybe I need to explain why, but when you suffer with fibromyalgia, going to see somebody or getting information from somebody that knows the facts, but doesn't live the problem, it's sort of like not the same thing. I don't know if you feel that way, but...
Speaker #1
Oh, I totally feel that way. It really is. It's one of those, you have no idea until you walk in our shoes, right?
Speaker #0
Yes, and especially since most of the time we both don't look like women that have fibromyalgia, but it doesn't mean that we're not living it. Yes, I agree. I read something, which I should have. Yeah, right here it says, it's a quote on a book that I wrote that I bought for fibromyalgia awareness, and it says, most people fake being sick, I fake being well.
Speaker #1
Yes, totally. And we actually had that on one of our newsletters that we put out last year. We had that because it's an invisible illness. And unless you have it, you look at people and think you look fine to me. And I get a lot of that because I run. And so I have a lot of pushback on that saying, you know, you don't look sick. You couldn't run if you had fibromyalgia. My thoughts about that is I hurt when I run, I hurt when I don't run. But truthfully, while I'm running is the only time I'm pain-free. So I hurt before, I hurt after. and I'm going to do that anyway, hurt before and hurt after, so I might as well enjoy it.
Speaker #0
Yeah, and you know what? I'm listening to you, Trudy, and I'm thinking right in my mind as a naturopath, well, this is where information is needed because when you run, you're producing something called oxytocin, which gives a pleasure moment to your brain. So, of course, we're not feeling the pain, but I used to run. Now I walk. But... I do feel the pain. I did feel the pain. And I still do, even when I'm walking, feel the pain once I stop. Because then that oxytocin decreases and all of your hormones and your pain system is still there working very hard to let you know something's wrong. So maybe education is a lot of what we do. Well, on one of the committees where I'm on with you. But I want to know why did you started this for awareness? how long has this been going? Is it fairly new, or I just found you like a couple of months ago?
Speaker #1
Yes, Fac is three years old.
Speaker #0
Okay.
Speaker #1
And it's interesting because how it all got started was Janice Sumpton, who's on the education committee with you, and she co-chairs the research committee with me and is also a board member. She sent me an article that was published on the Nova Scotia government website, which is where I live, and she asked me if I was aware of it. and I wasn't. So it basically said that it's a psychiatric illness, and if we all had CBT, we'd all be well. So I was quite upset that the government website had that on it. So I started contacting people, trying to get help with getting it off the website. And then I realized there's nobody out there representing fibromyalgia. It's always an add-on to another condition. So ME and fibromyalgia, arthritis and fibromyalgia, but nothing for just people with fibromyalgia. Personally, that's what I have, fibromyalgia. I don't have arthritis. I don't have ME. So, um, As coincidence have it, somebody contacted me and asked me if I would do a talk on their support group for May 12th, Fibromyalgia Awareness Day. And I did, and we got talking, and we talked about the fact there's no national group for fibromyalgia. And so we got about 15 people together and like-minded individuals who were interested in this. And that's when we formed FAT. and some of those people have come and gone because, you know, they've either had interest in other places, but they were there to get it started, and then we developed into, so there was a steering committee first, and then we developed into a board and carried on from there, and that's how it all started.
Speaker #0
Well, I, for one, am very, very glad because I just find that
Speaker #1
Well,
Speaker #0
it's so important to get the good information out. There is a lot of information about fibromyalgia. There are a lot of groups of people that proclaim or start a group on Facebook and want to help people. I'm not sure everything that's going on in there is really like fact-based, you know. This is what's really happening. Like you said, you know, some people are calling it a problem in your head. Well, it is partly true, but not all true. It does always to your brain, it does. But it doesn't make you like, okay, I've got a cuckoo's nest, something is wrong. Or I heard recently also somebody say, well, you can have fibromyalgia and not be depressed. Well, that's certainly not true because I'm not a depressed person and I've never been. I've had hard moments, but that is just not how my mind is wired. So all this information and all the, you know, I've also seen like people on Facebook or Instagram doing little reels and saying, oh, take this pill and it's gone. I must restrain myself when I see that because this is all hopeless information and money down the drain. But I know that with fact. well, we're getting, you know, the real stuff. And some stuff might be harder than others to swallow, but that is just how it is. Fact says it, and I know you believe it, and I know it's true because I've lived it. Once your fibromyalgia is declared and your doctors really say, okay, this is what you have, it doesn't go away. It's something like goes to sleep sometimes.
Speaker #1
Yes, I've been in remission. There are times when I've been in remission, what I call remission. Mm-hmm. But then something happens and... You know, you get an infection, viruses are a big trigger for me. And so then it's back, right? And it rears its ugly head. I have never thought that I was cured. While I was in that remission, I was very well aware that it was lurking in the background. And, you know, all I had to do was something different, have an allergic reaction. I have a lot of allergies. anything like that triggers it back up again. So yes, there is no cure for fibromyalgia. Mm-hmm. And about the psychiatric issues. it is, there are things in our head that are happening with fibromyalgia, but we do not have, it's not a psychiatric condition. And you don't, depression certainly doesn't cause fibromyalgia. And a lot of people with fibromyalgia do get depressed. When you're told you have a chronic condition that you have to put up with for the rest of your life, it's painful, causes exhaustion and brain fog. there's no treatment and they have no idea what causes it. Of course, some people get depressed. That's just a natural reaction to living with a chronic disease, especially an invisible chronic disease.
Speaker #0
I love your explanation. Thank you for that. And it is true. that it is hard at times, harder sometimes it gets better. That's part of living with fibromyalgia, as you just said. I was six years with no symptoms at all. So I, for the first time since I was very young, thought, I'm healed. I have heard other people talk about that, so I was like, yes. And I said that the week I said that, the next week I was in the hospital. and my hair was falling out like I had I was almost bald I had to stay there for two weeks and when I came out I had a specialist just for me for like four years and that that's where I really understood six years this was sleeping cells in my body but you know it's like your body recognizes and you everything in your body so once it sees it you can't hide it so it just happened i had accumulated and then something happened big in my life and bam i went like from going this to like whoa so i know it is in sometimes the feeling you we want to believe that it can be cured. But I'm teaching people that I work with, try to believe that it can be. You can learn to live with this illness and even sometimes say it's a hidden blessing, right? Yes. Because it keeps us from always going overboard. If you're a person like me, you're always running and doing everything. So, fibromyalgia picks up every morning and says, well, you're tired, what are you going to do, right?
Speaker #1
Interestingly, my daughter's had fibromyalgia since she was eight. So she doesn't really remember life before fibromyalgia. So she accepts it a lot better than I do because I still remember life before fibromyalgia, even though it's been a long time, like 30 years. But she interestingly said to me one time when I said, if you had one wish and you could be cured, of something, you know, because we have a lot of allergies, asthma, a few things like that. I said, would you pick fibromyalgia? I mean, if you had one wish in the world, is that what you'd pick? I want to be cured. And she said, no, surprisingly. Excuse me. which really surprised me. And she said, I don't remember life before it, and it's made me who I am, and I like who I am, so why would I want to be cured? And I thought, I'm pretty sure there's not many people out there who would say that.
Speaker #0
Well, I can understand how she came to that, because although I wasn't diagnosed young, I suffered all... I think I've been suffering since I was born, actually. Not exaggerating. At five years old, I was always crying. I had stomach aches. My mother would comb my hair, and I would scream, and she'd get mad, and she'd say, I'm not even touching your hair. I couldn't... This, I can, like... do now. It's a, I think it's the first time that I can tie my hair more than like an hour. really so that is just fibromyalgia and i had some i had really bad symptoms i especially started noticing when i first started my how do you say that men's monster menstruation menstruation yes okay uh because i had another immune disease i didn't know i but i had endometriosis which really hurts but when you have fibro you and endometriosis. That is, I was like, I couldn't go to school for the whole week I was in my periods and things like that. But I kept, doctor kept telling my mother that nothing was wrong with me. It was in my head. So we're going far back. It took a long time for me to, and I got my autoimmune disease diagnostic before fibromyalgia.
Speaker #1
But yes.
Speaker #0
you know, I'm like, that's the age I am. I mean, maybe I'm hoping it goes faster for people that go to the doctor. Do you have an insight on that? You know, for the... Well,
Speaker #1
interestingly, my grandson has fibromyalgia and he was like you. He started having pain when he was around five and his doctor kept telling him it was growing pains. He's 17 now, almost 18 next week. And his doctor still and he's six foot three. So he's 17. Yeah. Like I said. So for 12 years, almost 13 years. He's been. Suffering from this and not able to get a diagnosis. So I got the 2016 diagnostic criteria, which is on FACS website. And so if you're having a problem getting diagnosed, that's a good criteria to take to your doctor. but his doctor wouldn't even look at it. And she said to him, I don't want to label you. And I said to his mother, it's not a label. It's a diagnosis. It's not a label. Fibromyalgia is not a label. And so as a result, I would just finish there. Yeah. So we're having Dr. Christine Lamontagne in on May the 9th to discuss juvenile fibromyalgia because it's so very difficult to get children diagnosed. It's this growing pain thing that they hear over and over and over again.
Speaker #0
Truly, that is so interesting because... it just made me think of one of my grandsons here. And yeah, I'm going to have his mama listen to that. And me, I will listen because, you know, if we go back a couple of years. we were having trouble, adults, to be diagnostic. I'm thinking, okay, we're like 30-something years down the road, and you're still not wanting to give it. You're calling it a label? I don't think you do that with somebody that has diabetes, you know?
Speaker #1
No.
Speaker #0
I can't tell you you're diabetic because I'm going to label you. I'm just going to let you have insulin problems. It's crazy. I'm giving myself thumbs up. This is like crazy for me in 2024. So hopefully people are going to go. Like you say, I think we need to educate the people that think they have it, those that have it also, to bring back to reality what's true and what's false, and giving them, like you do, information to take back to their doctor. But maybe the next step would be let's help them talk to his doctor. I love to say to my clients, your doctor works for you. so get them get them to do what you're asking i want to see a rheumatologist that's it just give me the paper and i've done that with a few clients and they say but it worked it worked because that's what they're paid to do you don't want to okay fine give me a paper to go see another doctor because we need to teach them to take control of their their yes them their health because you As I can see from what you're saying, not much has changed.
Speaker #1
No, not much has. Now, my daughter was diagnosed very easily because the doctor she saw had fibromyalgia himself. And that's why it was not a struggle for me or her to be diagnosed. But, I mean, that's few and far between, right? So we were just lucky. And talking to your doctor is very important. That's something you're on the advocacy committee as well. And that's something we want to do on the advocacy committee is how to talk to your doctor. And I really like what you said when you said your doctor works for you. Oh, he does. We really need to get that across to people.
Speaker #0
especially here in Canada, when you're going with your card, you're paying him, you're paying him and you're paying him a lot. So please, you only have 10 minutes. Fine. I'm here. I'm ready. This, this, this is what I have. This is what it says. Please fill in this and do what you have to do. Get me diagnosed because I know it's this or I have a feeling, you know, you got to do it in a way you're not telling him what to do or her, but you're, you're driving them. there and I did not accept a no from my daughter when I went not my daughter but my doctor when I went to see him for something specific about my hormones I was like ready and I said I won't accept a no I remember his face and he says I'm here for help and you took my card before I came so please give me the help I need. As simple as that, you know, and it's something that we're afraid to do because he knows or she knows much more than us, but when we give them the good information, I mean, you go to your doctor and you have knowledge about your disease, you have knowledge about where you should go to get the help, you're just helping him along. We have some doctors that will say, oh, fine, I'll give you everything you want, go. That's perfect. That's perfect. But not they're not all that easy, right?
Speaker #1
But do you know, they're not more educated than we are, because we are the experts in fibromyalgia, they are not the experts in fibromyalgia, they probably get about 20 minute discussion in med school about chronic pain, which may or may not mention fibromyalgia. And I always say we are not chronic pain, we are fall under that. umbrella, but we're different than chronic pain because we have other major symptoms. You know, if you had an injured shoulder, and you have chronic pain, you can go to a physiotherapist, a chiropractor, whoever, and they take care of that shoulder. If I go to my doctor and say, I have a sore shoulder, by the time he's written me a prescription for the physiotherapist, it's in my hip. So how do you treat pain like that when it constantly moves around? So it makes us very different than the the chronic pain community. And yeah, it's very important. Fibromyalgia is not a diagnosis of exclusion. It's actually a diagnosis of inclusion on that 2016 diagnostic criteria. It tells you exactly what to look for. So it's not that you have to send us to cardiology, endocrinology. hematology, all those places, you as a family doctor can diagnose fibromyalgia just by using that criteria.
Speaker #0
Yeah, it is.
Speaker #1
And they don't.
Speaker #0
Well, I know that for sure you're right about they are knowledge on what they learned. And let's face it, I know from going to school that everything I learned in my two and a half years to be a naturopath. I'm sure that there's like more than half that I don't remember. So I have to open up my books. And doctors can't do that every time you go and you sit in front of him and you say something about your shoulder or having pain and sensations of burning on your body and they brush it away. It's much easier. Not all, but some. But I have learned recently for my own life and for what I'm teaching my clients is you have to be your best advocate and learn and learn and learn. So when you get a discussion with someone and they start telling you things, you don't just accept this as the truth. You'll know what's real and you can speak up for yourself and say, no, that's wrong. Like, you know, you look tired today. Maybe you should go to bed. do you have something like more encouraging like can i help you because you seem really tired today so i think it's harder for you right just like not letting people put all sorts of how you say that stickers on you of uh this is what yes yeah so in fibromyalgia month awareness this is where we are right now all of month of may you are doing that and i see purple behind you so can you tell me what what's going on with the purple
Speaker #1
Well, May is Fibromyalgia Awareness Month and May 12th is Fibromyalgia Awareness Day. So one of the things we're doing at FAC is an illumination campaign. So we approach buildings and landmarks across Canada asking them to light in purple. For Fibromyalgia Awareness Day and Month. This year, Fibromyalgia Day is on Sunday, so a lot of places found it hard to light on Sunday. So we just said it doesn't matter, you can light anytime during the month, and we'll include you. And we have over 165 buildings and landmarks across Canada lighting for awareness, and we really appreciate that. I mean, it helps bring us to the forefront. People say, why are you lighting in purple today? And so then they get educated, right? And we also have a lot that are doing proclamations declaring May 12th as Fibromyalgia Awareness Day in their town, city, province, which is really great.
Speaker #0
So what do they do with this proclamation? Can you explain? I know it's on the website in French and in English, I think.
Speaker #1
Yes. And they mail us or some, most of them send us the proclamation and they actually stand up in their, I'll say this in English, their legislature, legislative assembly or their province house or whatever they call it across Canada. And they, MPs, MPPs, NLAs. declare May 12th as Fibromyalgia Awareness Day in whatever province you're in and or whatever town you live in so I live in Halifax and it's been declared in council meetings that May 12th will be Fibromyalgia Awareness Day in Halifax so and then they also light for us which is great.
Speaker #0
Yes, well you know It's like putting up a flag, your color. This is us. Do you see us? Because you don't see us, but we're there.
Speaker #1
You know, the first year we did it, I went into the city. I live outside the city, but I went into the city and City Hall was lit up and the Nova Scotia Legislature Province House was lit up and so was the Lieutenant Governor's residence was lit up. And I cried. It was so... emotional for me that look at this they are lighting for us that I just cry yeah so that year we only we had not only we had 90 people light up and this year we have over 165 so it's
Speaker #0
building that's that's proof that all your work is is finally getting some exposure which is I mean one of the reasons I wanted to invite you because when I found you I like okay you I've been living all my life with fibromyalgia. How come I didn't know this existed? And there is an association in French for the French people. It's just that I love the fact that it's wider than just Quebec. I love that we have one in French also, but fibromyalgia is worldwide and there's a lot of people in Canada. So let's not just say I stay isolated in our provinces like in Canada. Well. you reach a lot more people.
Speaker #1
Yeah, so.
Speaker #0
It's very, anyway, I was blown away at, how come I had not seen you? I know I've said it three times. That's like, we've been talking about fibromyalgia for like six years now, so. you still need to talk about it.
Speaker #1
Yes, definitely. And raise awareness. Do you know there's over 2 million people in Canada have fibromyalgia? And those are only the ones diagnosed. And those are older statistics, right? I bet if Statistics Canada did a survey now in 2024, they'd find the numbers were much higher. Oh, I'm sure. And they don't even count people. So if your primary diagnosis is cardiac, and you also have fibromyalgia. Fibromyalgia is not considered. You're a cardiac patient. You're not a fibromyalgia patient. So over 2 million people with just fibromyalgia.
Speaker #0
and not just fibromyalgia, because we have so many comorbidities go along with fibromyalgia. I have allergies. IBS is something that goes along with it. Migraines goes along with it. And so it's never just fibromyalgia. It's a rare person that just has fibromyalgia.
Speaker #1
I've not heard more yet.
Speaker #0
And at one time, I was, or at least I thought I was. And then when I started realizing how many symptoms there are for people with fibromyalgia, I started thinking, well, no wonder I have migraines. They started around the same time that my fibromyalgia did. So it's interesting because the more people you talk to, the more you realize that they're. all those symptoms out there. So we actually are going to be this month as well, posting symptoms. And on our website, we're going to be posting, it's mental health month as well. And mental health is really important to people with fibromyalgia, taking care of yourself, looking after your mental health. So we'll be posting about that as well. We're going to post some myths that... break the myths so people understand this is a myth this is the fact so and and we're also doing some how to take care of yourself self-care tips during the month as well so it's about raising awareness it's about educating it's about advocacy it's just making sure people understand what fibromyalgia really is and how much it change changes your life I had to stop working.
Speaker #1
Let's talk about that.
Speaker #0
It changes your life. My life changed when my fibromyalgia got bad enough. Like I said, I was a nurse.
Speaker #1
Well, you don't have to say the age if you don't want, but how many years ago maybe?
Speaker #0
So. I had fibromyalgia and I had what I thought was under control and then I didn't, right? And so...
Speaker #1
So to place tricks on you like that.
Speaker #0
Yeah. So the early 2000s, I had to leave work. I was a nurse. There was a mold exposure at my hospital and that triggered it. Plus I had an injury. I worked on a dementia floor and I had a patient kind of. throw me across the room and I never really recovered from that so yeah and I mean that to me was devastating um just my social life was my co-workers and so to have to leave work was very very difficult so well that's a big finances right everything yeah yeah yes
Speaker #1
that's one part that we don't discuss when we talk about fibromyalgia like I'm a naturopathic that's what I do. I help women that have fibromyalgia. And sometimes I can only like take one or two clients per month. Well, I have colleagues that are doing this and they have about four or five, six a day. I can't, I can't, that's too much energy for me. And I, I now. at 60 something years old have realized that oh you need to keep this energy or you won't look tough long you know I'll have to shut down everything so sometimes I like I feel like why am I doing it well because it's still keeping me doing something I love and most of all my mission like probably FAC's mission is to help people give them information and where I found that like we sort of work together in a way, is that many people can do it on their own. Many people can go to like, see everything that's on pack and they can do it. They can change their life. I was one of those. But then there are people that need you to help them move along, give them the hope they need and get them going. And then after that, you're off. I always work like that. Like, you know, I don't keep you for six months or one year. What I want to do is make you able to walk on your own two feet and go. And you need me in like a month, call me, we'll see. And then, you know, you might need me once every year. That's it. But I want to educate people. especially, well, everybody, I mean, women or men can listen to me. I'm talking about fibromyalgia, so it does not have a sex nor age, right? No. But I find that we, like, it's a beautiful thing to have people doing it one-on-one, and then you also need the information that is accurate outside of that to help each other balance because, I mean, there's so much you just said. 2 million people in Canada? That's a lot of people.
Speaker #0
Yes, it is.
Speaker #1
That need help.
Speaker #0
Interesting that you mentioned age because, well, first of all, you don't look 60-something. And second of all was something that bothers me is when research studies put an age on things. And I understand why they have an age of 18 or 19. I understand that because they'd have to go through. the hassle of having my nurse parents consent, but I do not understand why they cut it off at 55, 60, 65.
Speaker #1
And it's like,
Speaker #0
do you think that once you get 65, you're cured or what? And I asked researchers.
Speaker #1
You're not interesting anymore.
Speaker #0
Well, I've asked researchers why they do that. And they tell me it's because over the age of 65, you develop other health conditions. And I'm thinking, how do you know that? How do you know that? I know lots of people over the age of 65 that don't have any other health conditions. So that's judging. And you're missing out on an entire population because you should be looking at how are people over the age of 65 coping with their fibromyalgia as they age. That would be great research.
Speaker #1
That would be beautiful research. And you're totally right because I had a client not long ago. she's over 70. She's just been declared with fibromyalgia and she does not know what to do. And this is like overwhelming for her. So she's one of my clients. And I'm thinking, yeah, what do you do? You know, at a certain age, you really need specific age, which is different than a 20 year old. And it might not be as easy to get that information, you know. So I'm thinking absolutely that it's a bit weird that they would stop at 65 because a lot of people, as they age, everybody's developing a disease in their life at any time. I mean, it's like your habits of living, the way you live, what you eat, what you think, what you do, all of this involves getting all sorts of diseases. So it's not a question of age. It's more a question of... what's going on in your life, right? And this stuff is going on in your life from childbirth to death.
Speaker #0
Yes, exactly. I agree. And, and I, I'm hoping that fact can help promote that, that you shouldn't be stopping the research at 65 that, you know, you need to research what's going on in people as they age and take care of people over 65. If there's no research out there on how fibromyalgia affects you as you age. how are doctors going to be able to help you as you age with this condition?
Speaker #1
It's also sending out the message, okay, I have fibromyalgia. I'm going to be 62, I think. That's a fibromyalgia problem I really love, forgetting my age. Anyway, when I get to 65, does this mean I can't get any more help?
Speaker #0
No, it doesn't mean you can't get any more help. But not specifically. You can't participate in research studies.
Speaker #1
But I think we, as we get older, we're good research. Because the pain is different. You've got all these other symptoms, like you were told, that can influence the pain. And how does that influence your fibromyalgia?
Speaker #0
Exactly. Exactly.
Speaker #1
So I'm thinking that's a no-brainer.
Speaker #0
We'll have to work on that together, Anne, because I see it as a real problem.
Speaker #1
Well, for me, when I heard you say that, I said, oh, my goodness. So I'm no good to research anymore. So my life is going to be like, okay, I'm just going to have to eat.
Speaker #0
You've got three years to get all that research, all those surveys done.
Speaker #1
You know what? Because when you're too young. At first, we weren't looking at kids with fibromyalgia. We're just starting to do that now. Yes. And to help, we're going to cut it up at 65 because, well. Yes. But my fibro won't stop at 55. So if I have a really big problem with my health, you can imagine my fibromyalgia, right? It's going to blow up.
Speaker #0
And there won't be any research out there to help you on someone who's a certain age. It's kind of like when we were doing advocacy for Bill C-22, which was the Canada Disability Benefit. It was the same thing. If you look, they're only interested in working people. Once you turn 65, it's like you're no longer disabled. They're not going to help you after you turn 65. And I don't know about most people realize, and I've had people tell me this, that once you turn 65, they lose their disability benefits, workman's compensation, and then they have to live on just old age security and Canada pension plan, Quebec pension plan. And it's a real drop in income that they were actually making more on disability. And the government's... 65, that's it. You don't get any help. Not that what they're giving is very much help, $200 a month, if not exactly. That's what that Canada disability, supposed to bring people out of poverty, disabled people out of poverty. You're not going to do that with $200 a month.
Speaker #1
No.
Speaker #0
When I heard that in the federal budget, I felt sick because I thought, wow, all the work we did fighting for this. Yes, it is there. But you're not going to bring people out of poverty with $200 a month.
Speaker #1
And I think, you know, according to whatever else their life is, hasn't $200 is... I don't know how long you can eat on $200 nowadays,
Speaker #0
right? Yes. Yeah.
Speaker #1
So anyway.
Speaker #0
And provincial disabilities, it was supposed to be a top-up for provincial disabilities, but I don't know about any place else. In Nova Scotia, that's $800 a month. That's what disabled people get in Nova Scotia. So $200 is going to bring you up to $1,000. And multiply that by $12, and that's $12,000. a year, which is well below the poverty line of 25,000, 27,000, depending where you live. That's well below the poverty line.
Speaker #1
I feel like adding that, okay, that's the government and they have no idea what these people are living. So, you know, they're just throwing that out there because they've got to put numbers and put a stop or something. And they're not treating them as human beings.
Speaker #0
So once again, FAC is trying to, you know, do some advocacy around that and help.
Speaker #1
So you're working, well, you and everybody else are working very hard. But I mean, you being chair with the other people. are probably the ones that start these mandates and let's go forward. So if you're not there on the community, we're not going to do much. So we need you. I hope you're not planning to retire.
Speaker #0
I know. And, you know, just like you said, it keeps me going. It keeps me so I don't get depressed. It keeps me from feeling like I'm. not worth anything because I have this condition. So volunteering is very, very good for your mental health. So I encourage anyone who wants to volunteer, just go to the FACT website and we certainly can use volunteers. We can especially use translators since I'm talking to Quebec. That's right. We can definitely use translators because we'd like to have everything in French.
Speaker #1
of course you know we have two translators so it makes that difficult to keep up so it was definitely not a lot yeah so you yeah well we'll get that out there because i mean if someone listening to us has learned from your this podcast or from your website well they should speak to them because i mean where are you getting the good information you I don't think it's from the doctor. You might get a little bit, but... Have you thought of giving your information of what you do to send that out to many doctors?
Speaker #0
Yes, we have, actually. And we're trying to figure out how to get them to listen. So there is... excuse me, something called Echo. And it's, it's like a portal for a webinar kind of, but, and it's Dr. Andrea Furlan does one on chronic pain. And so she invites doctors to come there, present their cases, everybody talks about them, and then they go away with all this information. And I, we would like to set one up for fibromyalgia. So we did some researching and it's about $350,000 to set one up for two years to teach across Canada. So, of course, we don't have that kind of money, but we're hoping that someday we will get that. And in the meantime, we're posting. We have a professional section on our website, so we're posting there.
Speaker #1
And what is the professional section?
Speaker #0
Doctors, physiotherapists, occupational therapists, so information, research that we have that they can use and access. But also, we're talking about how to get the information out to... the GPs across the country. And so we're hoping to work with the College of Physicians and Surgeons across Canada and hoping that they will, if we give them information, they will send it along to all their doctors. But, you know, like it's common for people not to read their email. So you only reach the people that really want to be reached, right?
Speaker #1
and I'm thinking like I don't know I'm thinking of me when I'm going to go see my doctor next week I could talk to him about it right there in the office and leave him something like hey this would be good because I mean he works I think 80% of his clientele is fibromyalgia you could die my doctor is the one who told me I want you to go study and help people because I cannot do what you're doing so yeah
Speaker #0
I appreciate what you're doing. But you could go in the website and download the criteria and take it. And that's what everybody could do. You could download the criteria, print it off, and take it into your doctor's office and say, this is from Fibromyalgia Association Canada, and this is how you make a diagnosis of fibromyalgia. researched it's proven this is the criteria accepted by the everyone across Canada and the United States for that matter so it's uh yeah and I think we should all be doing more of that actually printing off information and taking it to your doctor yeah that was one of the main reasons well of course I talk about fibromyalgia everywhere I think people are starting to know that you
Speaker #1
not only because I live with it, because now I know what I can do to get a better life, more vitality, eat in a certain way to help my gut, to prevent allergies, to prevent IBS and all that. And it's working. And it works on my clients. So I'm like, hey, we get good news there. So I think we should start telling people about what we just talked about in this paper and go download it and bring it and give it you know, if you're having to get the word out there that you can get this information right there for free.
Speaker #0
Yes.
Speaker #1
That's nothing. And it can change your life if you have a difficult doctor or a doctor that is not really listening, you know, about what it is or doesn't. rubs it off like, oh, well, it's normal type pain. It's humid.
Speaker #0
Yes, and it's not.
Speaker #1
Really? I say, really? So are you hurting as much as me today? No, I don't hurt. Okay.
Speaker #0
That's my role. It's interesting. My husband is very, very supportive. And we were doing something one day, physical work, and the next day he was so sore. And he said to me, are you as sore as I am? And I said. honey, I'm this sore every day.
Speaker #1
Exactly. Exactly. I know what you mean. Yeah, if I had an episode like that, my husband got really sick and he had a big migraine. And he said, I suffered chronic migraines from the age of 13, I think, to 30-something. I was on big pills and vomiting, not, you know, in the bed. I have no more migraines. I've not had a migraine since I don't know how many years. Wow. That was part of fibromyalgia when I was very, very young also. Yes. And my husband had a migraine after this health thing, a big migraine. And he was like almost crying. And I'm like, does it hurt? And I'm all empathetic. Because I can understand. He says, I don't know how you lived through this. he could remember me vomiting and him picking me up and getting me in bed because I couldn't look in my eyes. And he says, I don't know how you lived with this. I can't even stand this. And you're talking and it's hurting. And I said, well, that's my world.
Speaker #0
Yes.
Speaker #1
Sometimes it's intense. Sometimes it's less. And I do appreciate every time it's less. And when it's up, I'm saying, okay, it's time to relax. time to relax that's what my body's telling me right oh truly i could talk again and again with you we'll have to do a second one For sure.
Speaker #0
You know something talking about that, what I eat affects me. And I know you know that because you're a naturopath, but I don't know if a lot of people realize that what they eat affects their pain. And that's why we had Dr. Furlan in March talking about nutrition and fibromyalgia, which her talk is on our YouTube channel. But it is very, very true that your symptoms are very much affected by what you eat.
Speaker #1
Yes. It just, well, you have to understand how the digestive system works and all that. And once you understand that, okay, I've got these cells in my body that don't like this food and they're like going a bit crazy, then inflammation starts. And, you know, I don't have it here. Oh, I brought it. Where did I bring it? Give me a second. I want to show her book. Yes, I got it. I will be interviewing her in a few days. This is the book we are talking about. I am reading it and I love it. I love it. I love her work. I love that she's taking the time to talk about fibromyalgia. She could have chosen any other kind of... illness, right? But she said, nope, I'm going with this. So that should have, I will be asking her that, but she must have a lot of clients that have fibromyalgia.
Speaker #0
Yes, but she does specialize actually in chronic pain. But I think she has this interest in fibromyalgia. She is a wonderful, wonderful asset to Fibromyalgia Association Canada. If we have something we'd like her to talk about, she's there with bells on. You know, she's just has been a great support right from when we started.
Speaker #1
So that's great.
Speaker #0
She's been very good. She has a survey out, actually. Yes, I will go over.
Speaker #1
I saw that yesterday.
Speaker #0
Yeah. And so if any of your audience, she's looking to get, she has a certain number of participants she'd like to have. So if it is on FAC's website under our research section. And research participants want it if you, if anybody wants to take part in it, it's a good survey.
Speaker #1
Okay, I have it right in front of me. Let me show it. I think I can do that. Share screen. I want to share this one. So people that are looking can see it. So this is Dr. Furlan. Furlan.
Speaker #0
So if you click on the research section on our website there. Yeah.
Speaker #1
Research. Whoops.
Speaker #0
So if you go down the page a little bit, it'll say research participants wanted.
Speaker #1
Research causes... Oh, yeah, I got it.
Speaker #0
So if you click on there, you will see her study. That's her current research study that she's doing, and she needs participants for that study.
Speaker #1
Okay, so I would sign up here.
Speaker #0
Yes, you would.
Speaker #1
Whoops, that went wrong. So let me take that off. So I think it... Hmm, hmm, hmm. Now, I don't know how to get rid of this. Arrete. Just read. Just read. So, thank you so much. And I'm glad that she's doing that survey. I saw it yesterday. And I said, okay, I got to come back and just... I think they're looking for how much we know about information.
Speaker #0
Yes.
Speaker #1
Okay.
Speaker #0
Yes, they are. I'm looking. My name changed.
Speaker #1
Your name changed. Well, it's Trudy. Yeah,
Speaker #0
I'll put it back there.
Speaker #1
Sorry about that. I made you disappear. No,
Speaker #0
that's okay. Yes, so she's doing that research, and we're helping her spread the word so that more people do the survey. Because it's like all researchers, especially when it's survey type of research. If they don't get enough participants... it's very difficult for them to do the research.
Speaker #1
Yes, and I'm not sure, maybe you know this, but when you have a research, if you have like four or ten participants, it's not as, you know, there's not enough information there to get a good... Okay, so I'm right?
Speaker #0
Yes, you are.
Speaker #1
A couple of more. The more that you have, I mean, I think the bigger your... The information level would be to be able to make this.
Speaker #0
So it's more beneficial to have 100 or more research people. participants because then there's no, so if you have five people and we all had the same problem, the reason, you know, you wouldn't get any much benefit out of that. So the more you have, the more valuable your research is.
Speaker #1
I'm going to make it a part of my mission to make that circulate on my websites and things like that so people can go and do it. Is it only in English? Just asking.
Speaker #0
I believe so. Okay. I believe so.
Speaker #1
But I think now you can put everything like translated so they could write. Okay. Well, this was wonderful. And thank you so much, Trudy, for being here.
Speaker #0
It was great talking to you.
Speaker #1
Yes, I love it. So I might invite you again.
Speaker #0
Oh, thank you. It was great to meet with you. Yes,
Speaker #1
thank you. And I hope everybody really takes advantage of this. podcast because they need to know who you are so i'm just gonna thank you bye i'm trying to

About Fibromyalgie autrement !

Bienvenue au podcast "La fibromyalgie autrement" !

Un espace dédié aux femmes de 40 ans et plus qui vivent avec la fibromyalgie et souhaitent découvrir une façon différente de vivre avec cette condition.

Merci de me rejoindre dans cette aventure. Ensemble, découvrons comment vivre la fibromyalgie… autrement. 💜

Hébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.

About Fibromyalgie autrement !

Bienvenue au podcast "La fibromyalgie autrement" !

Un espace dédié aux femmes de 40 ans et plus qui vivent avec la fibromyalgie et souhaitent découvrir une façon différente de vivre avec cette condition.

Merci de me rejoindre dans cette aventure. Ensemble, découvrons comment vivre la fibromyalgie… autrement. 💜

Hébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.

Embed

You may also like

Description

Bonjour !

Aujourd’hui dans le podcast 🎙️Fibromyalgie Autrement, 💜 l'entrevue concerne Madame Trudy Flynn, présidente de l’Association Fibromyalgie Canada, AFC ou FAC en anglais.

L’épisode de cette semaine est en anglais, mais la vidéo sera bientôt disponible sur ma chaîne YouTube avec des sous-titres en français. Voici le lien - YouTube

Nous discutons de plusieurs sujets tels que :

La sensibilisation à la maladie ;
Les préjugés auxquels les personnes sont confrontées ;
Les défis ;
Les recherches ;
L’impact de l’alimentation sur la fibromyalgie ;
Et bien plus encore!

Bonne écoute 🎧 💜

Voici comment rejoindre l'AFC 👇

Tu peux me rejoindre ici 👇

Hébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.

Transcription

Speaker #0
Bonjour tout le monde qui nous écoute ou qui nous regarde. Je veux vous dire qu'aujourd'hui, j'ai vraiment une personne super, je vais dire, compétente et aussi encourageante qui s'appelle Madame Trudy Flynn. Elle est, c'est elle qui a parti dans le fond la fibromyalgie, l'association de fibromyalgie au Canada. Donc, maintenant, elle parle seulement en anglais. Donc, on va passer de l'anglais au français, mais inquiétez-vous pas. Vous allez pouvoir lire les... You can read it with the reading if you don't understand English. And you can also watch it visually. So it will be translated. All the subtitles will be translated into French. So I'm going to switch to English. Hello Trudy. Welcome to my podcast, which is called Fibromyalgie Autrement. It's like fibromyalgie otherwise. which I mean, you're going to choose to live your life another way than the typical road. Okay, so Trudy.
Speaker #1
Yes, thank you, Anne, for inviting me.
Speaker #0
It's my pleasure, really. I want to say that I have known you now for maybe a couple of months, and I'm always in awe when we meet for our committee reunions because you're such a... From inspiration. So my first question for you is as chair of Fibromyalgia Association, which you have, I want to say, a wonderful page on. internet well not a page it's it's really your site your whole site and it is translated not everything but most in french so for people listening um that you're french you can go in french or in english and i mean i even send my clients on that page because you have information that i don't have time to write on my blog or on my my internet site so it's a beautiful thing so let me ask you to explain to us what what is like FAC, because that's the acronym, right?
Speaker #1
Yes, it is. Excuse me. So Fibromyalgia Association Canada, or FAC, is the national association for people with fibromyalgia. It is run by people with fibromyalgia, for people with fibromyalgia, totally volunteer. No one gets paid, so it's totally a volunteer organization. And we are trying to raise awareness and help people with fibromyalgia right across Canada.
Speaker #0
You said something very interesting here that just like slided. But everybody that's working on this committee or the organization or whatever place, it's people that have fibromyalgia. They live with it daily.
Speaker #1
Yes. And on some of the committees, we do have people who are caregivers or support people for. husbands, wives, children with fibromyalgia, but our board is all people with fibromyalgia. So the organization is led by people with fibromyalgia, but if people want to volunteer on the committees and they have experience or have someone in their lives with fibromyalgia, we're open to that.
Speaker #0
I find that so, so encouraging. Maybe I need to explain why, but when you suffer with fibromyalgia, going to see somebody or getting information from somebody that knows the facts, but doesn't live the problem, it's sort of like not the same thing. I don't know if you feel that way, but...
Speaker #1
Oh, I totally feel that way. It really is. It's one of those, you have no idea until you walk in our shoes, right?
Speaker #0
Yes, and especially since most of the time we both don't look like women that have fibromyalgia, but it doesn't mean that we're not living it. Yes, I agree. I read something, which I should have. Yeah, right here it says, it's a quote on a book that I wrote that I bought for fibromyalgia awareness, and it says, most people fake being sick, I fake being well.
Speaker #1
Yes, totally. And we actually had that on one of our newsletters that we put out last year. We had that because it's an invisible illness. And unless you have it, you look at people and think you look fine to me. And I get a lot of that because I run. And so I have a lot of pushback on that saying, you know, you don't look sick. You couldn't run if you had fibromyalgia. My thoughts about that is I hurt when I run, I hurt when I don't run. But truthfully, while I'm running is the only time I'm pain-free. So I hurt before, I hurt after. and I'm going to do that anyway, hurt before and hurt after, so I might as well enjoy it.
Speaker #0
Yeah, and you know what? I'm listening to you, Trudy, and I'm thinking right in my mind as a naturopath, well, this is where information is needed because when you run, you're producing something called oxytocin, which gives a pleasure moment to your brain. So, of course, we're not feeling the pain, but I used to run. Now I walk. But... I do feel the pain. I did feel the pain. And I still do, even when I'm walking, feel the pain once I stop. Because then that oxytocin decreases and all of your hormones and your pain system is still there working very hard to let you know something's wrong. So maybe education is a lot of what we do. Well, on one of the committees where I'm on with you. But I want to know why did you started this for awareness? how long has this been going? Is it fairly new, or I just found you like a couple of months ago?
Speaker #1
Yes, Fac is three years old.
Speaker #0
Okay.
Speaker #1
And it's interesting because how it all got started was Janice Sumpton, who's on the education committee with you, and she co-chairs the research committee with me and is also a board member. She sent me an article that was published on the Nova Scotia government website, which is where I live, and she asked me if I was aware of it. and I wasn't. So it basically said that it's a psychiatric illness, and if we all had CBT, we'd all be well. So I was quite upset that the government website had that on it. So I started contacting people, trying to get help with getting it off the website. And then I realized there's nobody out there representing fibromyalgia. It's always an add-on to another condition. So ME and fibromyalgia, arthritis and fibromyalgia, but nothing for just people with fibromyalgia. Personally, that's what I have, fibromyalgia. I don't have arthritis. I don't have ME. So, um, As coincidence have it, somebody contacted me and asked me if I would do a talk on their support group for May 12th, Fibromyalgia Awareness Day. And I did, and we got talking, and we talked about the fact there's no national group for fibromyalgia. And so we got about 15 people together and like-minded individuals who were interested in this. And that's when we formed FAT. and some of those people have come and gone because, you know, they've either had interest in other places, but they were there to get it started, and then we developed into, so there was a steering committee first, and then we developed into a board and carried on from there, and that's how it all started.
Speaker #0
Well, I, for one, am very, very glad because I just find that
Speaker #1
Well,
Speaker #0
it's so important to get the good information out. There is a lot of information about fibromyalgia. There are a lot of groups of people that proclaim or start a group on Facebook and want to help people. I'm not sure everything that's going on in there is really like fact-based, you know. This is what's really happening. Like you said, you know, some people are calling it a problem in your head. Well, it is partly true, but not all true. It does always to your brain, it does. But it doesn't make you like, okay, I've got a cuckoo's nest, something is wrong. Or I heard recently also somebody say, well, you can have fibromyalgia and not be depressed. Well, that's certainly not true because I'm not a depressed person and I've never been. I've had hard moments, but that is just not how my mind is wired. So all this information and all the, you know, I've also seen like people on Facebook or Instagram doing little reels and saying, oh, take this pill and it's gone. I must restrain myself when I see that because this is all hopeless information and money down the drain. But I know that with fact. well, we're getting, you know, the real stuff. And some stuff might be harder than others to swallow, but that is just how it is. Fact says it, and I know you believe it, and I know it's true because I've lived it. Once your fibromyalgia is declared and your doctors really say, okay, this is what you have, it doesn't go away. It's something like goes to sleep sometimes.
Speaker #1
Yes, I've been in remission. There are times when I've been in remission, what I call remission. Mm-hmm. But then something happens and... You know, you get an infection, viruses are a big trigger for me. And so then it's back, right? And it rears its ugly head. I have never thought that I was cured. While I was in that remission, I was very well aware that it was lurking in the background. And, you know, all I had to do was something different, have an allergic reaction. I have a lot of allergies. anything like that triggers it back up again. So yes, there is no cure for fibromyalgia. Mm-hmm. And about the psychiatric issues. it is, there are things in our head that are happening with fibromyalgia, but we do not have, it's not a psychiatric condition. And you don't, depression certainly doesn't cause fibromyalgia. And a lot of people with fibromyalgia do get depressed. When you're told you have a chronic condition that you have to put up with for the rest of your life, it's painful, causes exhaustion and brain fog. there's no treatment and they have no idea what causes it. Of course, some people get depressed. That's just a natural reaction to living with a chronic disease, especially an invisible chronic disease.
Speaker #0
I love your explanation. Thank you for that. And it is true. that it is hard at times, harder sometimes it gets better. That's part of living with fibromyalgia, as you just said. I was six years with no symptoms at all. So I, for the first time since I was very young, thought, I'm healed. I have heard other people talk about that, so I was like, yes. And I said that the week I said that, the next week I was in the hospital. and my hair was falling out like I had I was almost bald I had to stay there for two weeks and when I came out I had a specialist just for me for like four years and that that's where I really understood six years this was sleeping cells in my body but you know it's like your body recognizes and you everything in your body so once it sees it you can't hide it so it just happened i had accumulated and then something happened big in my life and bam i went like from going this to like whoa so i know it is in sometimes the feeling you we want to believe that it can be cured. But I'm teaching people that I work with, try to believe that it can be. You can learn to live with this illness and even sometimes say it's a hidden blessing, right? Yes. Because it keeps us from always going overboard. If you're a person like me, you're always running and doing everything. So, fibromyalgia picks up every morning and says, well, you're tired, what are you going to do, right?
Speaker #1
Interestingly, my daughter's had fibromyalgia since she was eight. So she doesn't really remember life before fibromyalgia. So she accepts it a lot better than I do because I still remember life before fibromyalgia, even though it's been a long time, like 30 years. But she interestingly said to me one time when I said, if you had one wish and you could be cured, of something, you know, because we have a lot of allergies, asthma, a few things like that. I said, would you pick fibromyalgia? I mean, if you had one wish in the world, is that what you'd pick? I want to be cured. And she said, no, surprisingly. Excuse me. which really surprised me. And she said, I don't remember life before it, and it's made me who I am, and I like who I am, so why would I want to be cured? And I thought, I'm pretty sure there's not many people out there who would say that.
Speaker #0
Well, I can understand how she came to that, because although I wasn't diagnosed young, I suffered all... I think I've been suffering since I was born, actually. Not exaggerating. At five years old, I was always crying. I had stomach aches. My mother would comb my hair, and I would scream, and she'd get mad, and she'd say, I'm not even touching your hair. I couldn't... This, I can, like... do now. It's a, I think it's the first time that I can tie my hair more than like an hour. really so that is just fibromyalgia and i had some i had really bad symptoms i especially started noticing when i first started my how do you say that men's monster menstruation menstruation yes okay uh because i had another immune disease i didn't know i but i had endometriosis which really hurts but when you have fibro you and endometriosis. That is, I was like, I couldn't go to school for the whole week I was in my periods and things like that. But I kept, doctor kept telling my mother that nothing was wrong with me. It was in my head. So we're going far back. It took a long time for me to, and I got my autoimmune disease diagnostic before fibromyalgia.
Speaker #1
But yes.
Speaker #0
you know, I'm like, that's the age I am. I mean, maybe I'm hoping it goes faster for people that go to the doctor. Do you have an insight on that? You know, for the... Well,
Speaker #1
interestingly, my grandson has fibromyalgia and he was like you. He started having pain when he was around five and his doctor kept telling him it was growing pains. He's 17 now, almost 18 next week. And his doctor still and he's six foot three. So he's 17. Yeah. Like I said. So for 12 years, almost 13 years. He's been. Suffering from this and not able to get a diagnosis. So I got the 2016 diagnostic criteria, which is on FACS website. And so if you're having a problem getting diagnosed, that's a good criteria to take to your doctor. but his doctor wouldn't even look at it. And she said to him, I don't want to label you. And I said to his mother, it's not a label. It's a diagnosis. It's not a label. Fibromyalgia is not a label. And so as a result, I would just finish there. Yeah. So we're having Dr. Christine Lamontagne in on May the 9th to discuss juvenile fibromyalgia because it's so very difficult to get children diagnosed. It's this growing pain thing that they hear over and over and over again.
Speaker #0
Truly, that is so interesting because... it just made me think of one of my grandsons here. And yeah, I'm going to have his mama listen to that. And me, I will listen because, you know, if we go back a couple of years. we were having trouble, adults, to be diagnostic. I'm thinking, okay, we're like 30-something years down the road, and you're still not wanting to give it. You're calling it a label? I don't think you do that with somebody that has diabetes, you know?
Speaker #1
No.
Speaker #0
I can't tell you you're diabetic because I'm going to label you. I'm just going to let you have insulin problems. It's crazy. I'm giving myself thumbs up. This is like crazy for me in 2024. So hopefully people are going to go. Like you say, I think we need to educate the people that think they have it, those that have it also, to bring back to reality what's true and what's false, and giving them, like you do, information to take back to their doctor. But maybe the next step would be let's help them talk to his doctor. I love to say to my clients, your doctor works for you. so get them get them to do what you're asking i want to see a rheumatologist that's it just give me the paper and i've done that with a few clients and they say but it worked it worked because that's what they're paid to do you don't want to okay fine give me a paper to go see another doctor because we need to teach them to take control of their their yes them their health because you As I can see from what you're saying, not much has changed.
Speaker #1
No, not much has. Now, my daughter was diagnosed very easily because the doctor she saw had fibromyalgia himself. And that's why it was not a struggle for me or her to be diagnosed. But, I mean, that's few and far between, right? So we were just lucky. And talking to your doctor is very important. That's something you're on the advocacy committee as well. And that's something we want to do on the advocacy committee is how to talk to your doctor. And I really like what you said when you said your doctor works for you. Oh, he does. We really need to get that across to people.
Speaker #0
especially here in Canada, when you're going with your card, you're paying him, you're paying him and you're paying him a lot. So please, you only have 10 minutes. Fine. I'm here. I'm ready. This, this, this is what I have. This is what it says. Please fill in this and do what you have to do. Get me diagnosed because I know it's this or I have a feeling, you know, you got to do it in a way you're not telling him what to do or her, but you're, you're driving them. there and I did not accept a no from my daughter when I went not my daughter but my doctor when I went to see him for something specific about my hormones I was like ready and I said I won't accept a no I remember his face and he says I'm here for help and you took my card before I came so please give me the help I need. As simple as that, you know, and it's something that we're afraid to do because he knows or she knows much more than us, but when we give them the good information, I mean, you go to your doctor and you have knowledge about your disease, you have knowledge about where you should go to get the help, you're just helping him along. We have some doctors that will say, oh, fine, I'll give you everything you want, go. That's perfect. That's perfect. But not they're not all that easy, right?
Speaker #1
But do you know, they're not more educated than we are, because we are the experts in fibromyalgia, they are not the experts in fibromyalgia, they probably get about 20 minute discussion in med school about chronic pain, which may or may not mention fibromyalgia. And I always say we are not chronic pain, we are fall under that. umbrella, but we're different than chronic pain because we have other major symptoms. You know, if you had an injured shoulder, and you have chronic pain, you can go to a physiotherapist, a chiropractor, whoever, and they take care of that shoulder. If I go to my doctor and say, I have a sore shoulder, by the time he's written me a prescription for the physiotherapist, it's in my hip. So how do you treat pain like that when it constantly moves around? So it makes us very different than the the chronic pain community. And yeah, it's very important. Fibromyalgia is not a diagnosis of exclusion. It's actually a diagnosis of inclusion on that 2016 diagnostic criteria. It tells you exactly what to look for. So it's not that you have to send us to cardiology, endocrinology. hematology, all those places, you as a family doctor can diagnose fibromyalgia just by using that criteria.
Speaker #0
Yeah, it is.
Speaker #1
And they don't.
Speaker #0
Well, I know that for sure you're right about they are knowledge on what they learned. And let's face it, I know from going to school that everything I learned in my two and a half years to be a naturopath. I'm sure that there's like more than half that I don't remember. So I have to open up my books. And doctors can't do that every time you go and you sit in front of him and you say something about your shoulder or having pain and sensations of burning on your body and they brush it away. It's much easier. Not all, but some. But I have learned recently for my own life and for what I'm teaching my clients is you have to be your best advocate and learn and learn and learn. So when you get a discussion with someone and they start telling you things, you don't just accept this as the truth. You'll know what's real and you can speak up for yourself and say, no, that's wrong. Like, you know, you look tired today. Maybe you should go to bed. do you have something like more encouraging like can i help you because you seem really tired today so i think it's harder for you right just like not letting people put all sorts of how you say that stickers on you of uh this is what yes yeah so in fibromyalgia month awareness this is where we are right now all of month of may you are doing that and i see purple behind you so can you tell me what what's going on with the purple
Speaker #1
Well, May is Fibromyalgia Awareness Month and May 12th is Fibromyalgia Awareness Day. So one of the things we're doing at FAC is an illumination campaign. So we approach buildings and landmarks across Canada asking them to light in purple. For Fibromyalgia Awareness Day and Month. This year, Fibromyalgia Day is on Sunday, so a lot of places found it hard to light on Sunday. So we just said it doesn't matter, you can light anytime during the month, and we'll include you. And we have over 165 buildings and landmarks across Canada lighting for awareness, and we really appreciate that. I mean, it helps bring us to the forefront. People say, why are you lighting in purple today? And so then they get educated, right? And we also have a lot that are doing proclamations declaring May 12th as Fibromyalgia Awareness Day in their town, city, province, which is really great.
Speaker #0
So what do they do with this proclamation? Can you explain? I know it's on the website in French and in English, I think.
Speaker #1
Yes. And they mail us or some, most of them send us the proclamation and they actually stand up in their, I'll say this in English, their legislature, legislative assembly or their province house or whatever they call it across Canada. And they, MPs, MPPs, NLAs. declare May 12th as Fibromyalgia Awareness Day in whatever province you're in and or whatever town you live in so I live in Halifax and it's been declared in council meetings that May 12th will be Fibromyalgia Awareness Day in Halifax so and then they also light for us which is great.
Speaker #0
Yes, well you know It's like putting up a flag, your color. This is us. Do you see us? Because you don't see us, but we're there.
Speaker #1
You know, the first year we did it, I went into the city. I live outside the city, but I went into the city and City Hall was lit up and the Nova Scotia Legislature Province House was lit up and so was the Lieutenant Governor's residence was lit up. And I cried. It was so... emotional for me that look at this they are lighting for us that I just cry yeah so that year we only we had not only we had 90 people light up and this year we have over 165 so it's
Speaker #0
building that's that's proof that all your work is is finally getting some exposure which is I mean one of the reasons I wanted to invite you because when I found you I like okay you I've been living all my life with fibromyalgia. How come I didn't know this existed? And there is an association in French for the French people. It's just that I love the fact that it's wider than just Quebec. I love that we have one in French also, but fibromyalgia is worldwide and there's a lot of people in Canada. So let's not just say I stay isolated in our provinces like in Canada. Well. you reach a lot more people.
Speaker #1
Yeah, so.
Speaker #0
It's very, anyway, I was blown away at, how come I had not seen you? I know I've said it three times. That's like, we've been talking about fibromyalgia for like six years now, so. you still need to talk about it.
Speaker #1
Yes, definitely. And raise awareness. Do you know there's over 2 million people in Canada have fibromyalgia? And those are only the ones diagnosed. And those are older statistics, right? I bet if Statistics Canada did a survey now in 2024, they'd find the numbers were much higher. Oh, I'm sure. And they don't even count people. So if your primary diagnosis is cardiac, and you also have fibromyalgia. Fibromyalgia is not considered. You're a cardiac patient. You're not a fibromyalgia patient. So over 2 million people with just fibromyalgia.
Speaker #0
and not just fibromyalgia, because we have so many comorbidities go along with fibromyalgia. I have allergies. IBS is something that goes along with it. Migraines goes along with it. And so it's never just fibromyalgia. It's a rare person that just has fibromyalgia.
Speaker #1
I've not heard more yet.
Speaker #0
And at one time, I was, or at least I thought I was. And then when I started realizing how many symptoms there are for people with fibromyalgia, I started thinking, well, no wonder I have migraines. They started around the same time that my fibromyalgia did. So it's interesting because the more people you talk to, the more you realize that they're. all those symptoms out there. So we actually are going to be this month as well, posting symptoms. And on our website, we're going to be posting, it's mental health month as well. And mental health is really important to people with fibromyalgia, taking care of yourself, looking after your mental health. So we'll be posting about that as well. We're going to post some myths that... break the myths so people understand this is a myth this is the fact so and and we're also doing some how to take care of yourself self-care tips during the month as well so it's about raising awareness it's about educating it's about advocacy it's just making sure people understand what fibromyalgia really is and how much it change changes your life I had to stop working.
Speaker #1
Let's talk about that.
Speaker #0
It changes your life. My life changed when my fibromyalgia got bad enough. Like I said, I was a nurse.
Speaker #1
Well, you don't have to say the age if you don't want, but how many years ago maybe?
Speaker #0
So. I had fibromyalgia and I had what I thought was under control and then I didn't, right? And so...
Speaker #1
So to place tricks on you like that.
Speaker #0
Yeah. So the early 2000s, I had to leave work. I was a nurse. There was a mold exposure at my hospital and that triggered it. Plus I had an injury. I worked on a dementia floor and I had a patient kind of. throw me across the room and I never really recovered from that so yeah and I mean that to me was devastating um just my social life was my co-workers and so to have to leave work was very very difficult so well that's a big finances right everything yeah yeah yes
Speaker #1
that's one part that we don't discuss when we talk about fibromyalgia like I'm a naturopathic that's what I do. I help women that have fibromyalgia. And sometimes I can only like take one or two clients per month. Well, I have colleagues that are doing this and they have about four or five, six a day. I can't, I can't, that's too much energy for me. And I, I now. at 60 something years old have realized that oh you need to keep this energy or you won't look tough long you know I'll have to shut down everything so sometimes I like I feel like why am I doing it well because it's still keeping me doing something I love and most of all my mission like probably FAC's mission is to help people give them information and where I found that like we sort of work together in a way, is that many people can do it on their own. Many people can go to like, see everything that's on pack and they can do it. They can change their life. I was one of those. But then there are people that need you to help them move along, give them the hope they need and get them going. And then after that, you're off. I always work like that. Like, you know, I don't keep you for six months or one year. What I want to do is make you able to walk on your own two feet and go. And you need me in like a month, call me, we'll see. And then, you know, you might need me once every year. That's it. But I want to educate people. especially, well, everybody, I mean, women or men can listen to me. I'm talking about fibromyalgia, so it does not have a sex nor age, right? No. But I find that we, like, it's a beautiful thing to have people doing it one-on-one, and then you also need the information that is accurate outside of that to help each other balance because, I mean, there's so much you just said. 2 million people in Canada? That's a lot of people.
Speaker #0
Yes, it is.
Speaker #1
That need help.
Speaker #0
Interesting that you mentioned age because, well, first of all, you don't look 60-something. And second of all was something that bothers me is when research studies put an age on things. And I understand why they have an age of 18 or 19. I understand that because they'd have to go through. the hassle of having my nurse parents consent, but I do not understand why they cut it off at 55, 60, 65.
Speaker #1
And it's like,
Speaker #0
do you think that once you get 65, you're cured or what? And I asked researchers.
Speaker #1
You're not interesting anymore.
Speaker #0
Well, I've asked researchers why they do that. And they tell me it's because over the age of 65, you develop other health conditions. And I'm thinking, how do you know that? How do you know that? I know lots of people over the age of 65 that don't have any other health conditions. So that's judging. And you're missing out on an entire population because you should be looking at how are people over the age of 65 coping with their fibromyalgia as they age. That would be great research.
Speaker #1
That would be beautiful research. And you're totally right because I had a client not long ago. she's over 70. She's just been declared with fibromyalgia and she does not know what to do. And this is like overwhelming for her. So she's one of my clients. And I'm thinking, yeah, what do you do? You know, at a certain age, you really need specific age, which is different than a 20 year old. And it might not be as easy to get that information, you know. So I'm thinking absolutely that it's a bit weird that they would stop at 65 because a lot of people, as they age, everybody's developing a disease in their life at any time. I mean, it's like your habits of living, the way you live, what you eat, what you think, what you do, all of this involves getting all sorts of diseases. So it's not a question of age. It's more a question of... what's going on in your life, right? And this stuff is going on in your life from childbirth to death.
Speaker #0
Yes, exactly. I agree. And, and I, I'm hoping that fact can help promote that, that you shouldn't be stopping the research at 65 that, you know, you need to research what's going on in people as they age and take care of people over 65. If there's no research out there on how fibromyalgia affects you as you age. how are doctors going to be able to help you as you age with this condition?
Speaker #1
It's also sending out the message, okay, I have fibromyalgia. I'm going to be 62, I think. That's a fibromyalgia problem I really love, forgetting my age. Anyway, when I get to 65, does this mean I can't get any more help?
Speaker #0
No, it doesn't mean you can't get any more help. But not specifically. You can't participate in research studies.
Speaker #1
But I think we, as we get older, we're good research. Because the pain is different. You've got all these other symptoms, like you were told, that can influence the pain. And how does that influence your fibromyalgia?
Speaker #0
Exactly. Exactly.
Speaker #1
So I'm thinking that's a no-brainer.
Speaker #0
We'll have to work on that together, Anne, because I see it as a real problem.
Speaker #1
Well, for me, when I heard you say that, I said, oh, my goodness. So I'm no good to research anymore. So my life is going to be like, okay, I'm just going to have to eat.
Speaker #0
You've got three years to get all that research, all those surveys done.
Speaker #1
You know what? Because when you're too young. At first, we weren't looking at kids with fibromyalgia. We're just starting to do that now. Yes. And to help, we're going to cut it up at 65 because, well. Yes. But my fibro won't stop at 55. So if I have a really big problem with my health, you can imagine my fibromyalgia, right? It's going to blow up.
Speaker #0
And there won't be any research out there to help you on someone who's a certain age. It's kind of like when we were doing advocacy for Bill C-22, which was the Canada Disability Benefit. It was the same thing. If you look, they're only interested in working people. Once you turn 65, it's like you're no longer disabled. They're not going to help you after you turn 65. And I don't know about most people realize, and I've had people tell me this, that once you turn 65, they lose their disability benefits, workman's compensation, and then they have to live on just old age security and Canada pension plan, Quebec pension plan. And it's a real drop in income that they were actually making more on disability. And the government's... 65, that's it. You don't get any help. Not that what they're giving is very much help, $200 a month, if not exactly. That's what that Canada disability, supposed to bring people out of poverty, disabled people out of poverty. You're not going to do that with $200 a month.
Speaker #1
No.
Speaker #0
When I heard that in the federal budget, I felt sick because I thought, wow, all the work we did fighting for this. Yes, it is there. But you're not going to bring people out of poverty with $200 a month.
Speaker #1
And I think, you know, according to whatever else their life is, hasn't $200 is... I don't know how long you can eat on $200 nowadays,
Speaker #0
right? Yes. Yeah.
Speaker #1
So anyway.
Speaker #0
And provincial disabilities, it was supposed to be a top-up for provincial disabilities, but I don't know about any place else. In Nova Scotia, that's $800 a month. That's what disabled people get in Nova Scotia. So $200 is going to bring you up to $1,000. And multiply that by $12, and that's $12,000. a year, which is well below the poverty line of 25,000, 27,000, depending where you live. That's well below the poverty line.
Speaker #1
I feel like adding that, okay, that's the government and they have no idea what these people are living. So, you know, they're just throwing that out there because they've got to put numbers and put a stop or something. And they're not treating them as human beings.
Speaker #0
So once again, FAC is trying to, you know, do some advocacy around that and help.
Speaker #1
So you're working, well, you and everybody else are working very hard. But I mean, you being chair with the other people. are probably the ones that start these mandates and let's go forward. So if you're not there on the community, we're not going to do much. So we need you. I hope you're not planning to retire.
Speaker #0
I know. And, you know, just like you said, it keeps me going. It keeps me so I don't get depressed. It keeps me from feeling like I'm. not worth anything because I have this condition. So volunteering is very, very good for your mental health. So I encourage anyone who wants to volunteer, just go to the FACT website and we certainly can use volunteers. We can especially use translators since I'm talking to Quebec. That's right. We can definitely use translators because we'd like to have everything in French.
Speaker #1
of course you know we have two translators so it makes that difficult to keep up so it was definitely not a lot yeah so you yeah well we'll get that out there because i mean if someone listening to us has learned from your this podcast or from your website well they should speak to them because i mean where are you getting the good information you I don't think it's from the doctor. You might get a little bit, but... Have you thought of giving your information of what you do to send that out to many doctors?
Speaker #0
Yes, we have, actually. And we're trying to figure out how to get them to listen. So there is... excuse me, something called Echo. And it's, it's like a portal for a webinar kind of, but, and it's Dr. Andrea Furlan does one on chronic pain. And so she invites doctors to come there, present their cases, everybody talks about them, and then they go away with all this information. And I, we would like to set one up for fibromyalgia. So we did some researching and it's about $350,000 to set one up for two years to teach across Canada. So, of course, we don't have that kind of money, but we're hoping that someday we will get that. And in the meantime, we're posting. We have a professional section on our website, so we're posting there.
Speaker #1
And what is the professional section?
Speaker #0
Doctors, physiotherapists, occupational therapists, so information, research that we have that they can use and access. But also, we're talking about how to get the information out to... the GPs across the country. And so we're hoping to work with the College of Physicians and Surgeons across Canada and hoping that they will, if we give them information, they will send it along to all their doctors. But, you know, like it's common for people not to read their email. So you only reach the people that really want to be reached, right?
Speaker #1
and I'm thinking like I don't know I'm thinking of me when I'm going to go see my doctor next week I could talk to him about it right there in the office and leave him something like hey this would be good because I mean he works I think 80% of his clientele is fibromyalgia you could die my doctor is the one who told me I want you to go study and help people because I cannot do what you're doing so yeah
Speaker #0
I appreciate what you're doing. But you could go in the website and download the criteria and take it. And that's what everybody could do. You could download the criteria, print it off, and take it into your doctor's office and say, this is from Fibromyalgia Association Canada, and this is how you make a diagnosis of fibromyalgia. researched it's proven this is the criteria accepted by the everyone across Canada and the United States for that matter so it's uh yeah and I think we should all be doing more of that actually printing off information and taking it to your doctor yeah that was one of the main reasons well of course I talk about fibromyalgia everywhere I think people are starting to know that you
Speaker #1
not only because I live with it, because now I know what I can do to get a better life, more vitality, eat in a certain way to help my gut, to prevent allergies, to prevent IBS and all that. And it's working. And it works on my clients. So I'm like, hey, we get good news there. So I think we should start telling people about what we just talked about in this paper and go download it and bring it and give it you know, if you're having to get the word out there that you can get this information right there for free.
Speaker #0
Yes.
Speaker #1
That's nothing. And it can change your life if you have a difficult doctor or a doctor that is not really listening, you know, about what it is or doesn't. rubs it off like, oh, well, it's normal type pain. It's humid.
Speaker #0
Yes, and it's not.
Speaker #1
Really? I say, really? So are you hurting as much as me today? No, I don't hurt. Okay.
Speaker #0
That's my role. It's interesting. My husband is very, very supportive. And we were doing something one day, physical work, and the next day he was so sore. And he said to me, are you as sore as I am? And I said. honey, I'm this sore every day.
Speaker #1
Exactly. Exactly. I know what you mean. Yeah, if I had an episode like that, my husband got really sick and he had a big migraine. And he said, I suffered chronic migraines from the age of 13, I think, to 30-something. I was on big pills and vomiting, not, you know, in the bed. I have no more migraines. I've not had a migraine since I don't know how many years. Wow. That was part of fibromyalgia when I was very, very young also. Yes. And my husband had a migraine after this health thing, a big migraine. And he was like almost crying. And I'm like, does it hurt? And I'm all empathetic. Because I can understand. He says, I don't know how you lived through this. he could remember me vomiting and him picking me up and getting me in bed because I couldn't look in my eyes. And he says, I don't know how you lived with this. I can't even stand this. And you're talking and it's hurting. And I said, well, that's my world.
Speaker #0
Yes.
Speaker #1
Sometimes it's intense. Sometimes it's less. And I do appreciate every time it's less. And when it's up, I'm saying, okay, it's time to relax. time to relax that's what my body's telling me right oh truly i could talk again and again with you we'll have to do a second one For sure.
Speaker #0
You know something talking about that, what I eat affects me. And I know you know that because you're a naturopath, but I don't know if a lot of people realize that what they eat affects their pain. And that's why we had Dr. Furlan in March talking about nutrition and fibromyalgia, which her talk is on our YouTube channel. But it is very, very true that your symptoms are very much affected by what you eat.
Speaker #1
Yes. It just, well, you have to understand how the digestive system works and all that. And once you understand that, okay, I've got these cells in my body that don't like this food and they're like going a bit crazy, then inflammation starts. And, you know, I don't have it here. Oh, I brought it. Where did I bring it? Give me a second. I want to show her book. Yes, I got it. I will be interviewing her in a few days. This is the book we are talking about. I am reading it and I love it. I love it. I love her work. I love that she's taking the time to talk about fibromyalgia. She could have chosen any other kind of... illness, right? But she said, nope, I'm going with this. So that should have, I will be asking her that, but she must have a lot of clients that have fibromyalgia.
Speaker #0
Yes, but she does specialize actually in chronic pain. But I think she has this interest in fibromyalgia. She is a wonderful, wonderful asset to Fibromyalgia Association Canada. If we have something we'd like her to talk about, she's there with bells on. You know, she's just has been a great support right from when we started.
Speaker #1
So that's great.
Speaker #0
She's been very good. She has a survey out, actually. Yes, I will go over.
Speaker #1
I saw that yesterday.
Speaker #0
Yeah. And so if any of your audience, she's looking to get, she has a certain number of participants she'd like to have. So if it is on FAC's website under our research section. And research participants want it if you, if anybody wants to take part in it, it's a good survey.
Speaker #1
Okay, I have it right in front of me. Let me show it. I think I can do that. Share screen. I want to share this one. So people that are looking can see it. So this is Dr. Furlan. Furlan.
Speaker #0
So if you click on the research section on our website there. Yeah.
Speaker #1
Research. Whoops.
Speaker #0
So if you go down the page a little bit, it'll say research participants wanted.
Speaker #1
Research causes... Oh, yeah, I got it.
Speaker #0
So if you click on there, you will see her study. That's her current research study that she's doing, and she needs participants for that study.
Speaker #1
Okay, so I would sign up here.
Speaker #0
Yes, you would.
Speaker #1
Whoops, that went wrong. So let me take that off. So I think it... Hmm, hmm, hmm. Now, I don't know how to get rid of this. Arrete. Just read. Just read. So, thank you so much. And I'm glad that she's doing that survey. I saw it yesterday. And I said, okay, I got to come back and just... I think they're looking for how much we know about information.
Speaker #0
Yes.
Speaker #1
Okay.
Speaker #0
Yes, they are. I'm looking. My name changed.
Speaker #1
Your name changed. Well, it's Trudy. Yeah,
Speaker #0
I'll put it back there.
Speaker #1
Sorry about that. I made you disappear. No,
Speaker #0
that's okay. Yes, so she's doing that research, and we're helping her spread the word so that more people do the survey. Because it's like all researchers, especially when it's survey type of research. If they don't get enough participants... it's very difficult for them to do the research.
Speaker #1
Yes, and I'm not sure, maybe you know this, but when you have a research, if you have like four or ten participants, it's not as, you know, there's not enough information there to get a good... Okay, so I'm right?
Speaker #0
Yes, you are.
Speaker #1
A couple of more. The more that you have, I mean, I think the bigger your... The information level would be to be able to make this.
Speaker #0
So it's more beneficial to have 100 or more research people. participants because then there's no, so if you have five people and we all had the same problem, the reason, you know, you wouldn't get any much benefit out of that. So the more you have, the more valuable your research is.
Speaker #1
I'm going to make it a part of my mission to make that circulate on my websites and things like that so people can go and do it. Is it only in English? Just asking.
Speaker #0
I believe so. Okay. I believe so.
Speaker #1
But I think now you can put everything like translated so they could write. Okay. Well, this was wonderful. And thank you so much, Trudy, for being here.
Speaker #0
It was great talking to you.
Speaker #1
Yes, I love it. So I might invite you again.
Speaker #0
Oh, thank you. It was great to meet with you. Yes,
Speaker #1
thank you. And I hope everybody really takes advantage of this. podcast because they need to know who you are so i'm just gonna thank you bye i'm trying to

About Fibromyalgie autrement !

Bienvenue au podcast "La fibromyalgie autrement" !

Un espace dédié aux femmes de 40 ans et plus qui vivent avec la fibromyalgie et souhaitent découvrir une façon différente de vivre avec cette condition.

Merci de me rejoindre dans cette aventure. Ensemble, découvrons comment vivre la fibromyalgie… autrement. 💜

Hébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.

About Fibromyalgie autrement !

Bienvenue au podcast "La fibromyalgie autrement" !

Un espace dédié aux femmes de 40 ans et plus qui vivent avec la fibromyalgie et souhaitent découvrir une façon différente de vivre avec cette condition.

Merci de me rejoindre dans cette aventure. Ensemble, découvrons comment vivre la fibromyalgie… autrement. 💜

Hébergé par Ausha. Visitez ausha.co/politique-de-confidentialite pour plus d'informations.

Description

Bonjour !

Aujourd’hui dans le podcast 🎙️Fibromyalgie Autrement, 💜 l'entrevue concerne Madame Trudy Flynn, présidente de l’Association Fibromyalgie Canada, AFC ou FAC en anglais.

L’épisode de cette semaine est en anglais, mais la vidéo sera bientôt disponible sur ma chaîne YouTube avec des sous-titres en français. Voici le lien - YouTube

Nous discutons de plusieurs sujets tels que :

La sensibilisation à la maladie ;
Les préjugés auxquels les personnes sont confrontées ;
Les défis ;
Les recherches ;
L’impact de l’alimentation sur la fibromyalgie ;
Et bien plus encore!

Bonne écoute 🎧 💜

Voici comment rejoindre l'AFC 👇

Tu peux me rejoindre ici 👇