It’s like living a safe nightmare, safe meaning you have a family, home, friends, Dr’s, who help but it’s still a living nightmare, the fatigue is the worst for me as I’ve gone from being a 110 miles an hour to 0, literally some days can’t do a single thing 😶😔
My teenage daughter has this and it overwhelming. She’s a senior and these are supposed to be some of her most fun years, but she’s struggling and it seems like not much helps. My heart goes out to all those suffering from Fibromyalgia.
My mother has been dealing with fibromyalgia since 2014. She has brain fogs and mood swings. I hate seeing my mother suffer. I’m sorry about your daughter, she’s lucky to have people who care for her ❤
I’m sorry for all who suffer from fibromyalgia, however I’m especially sorry for young people suffering this debilitating pain. 😞 I’m lucky in a way as I was diagnosed at 77, I’ve had it for a number of years. I can’t imagine having it for decades.
Wish my mother was this understanding about my fibro. As a teen....having fibro can be so taxing on our mental health. We never get a good nighrs sleep, we get so many secondary symptoms, focusing in school can be hard with fibro fog...etc.
Maybe this could help you.. I learned to take a moment, specially in stress, to close my eyes and 'monitor' myself if I was unconsciously tensioning a muscle or muscles. Sometimes I still find some, and relaxing them takes some effort.
I have this. I am in bed all day today. I have put on a lot of weight. I try to exercise. Walking. Psychotherapy. Tramadol in small careful amounts is excellent for me .
More research is needed, but the sad truth is that as it affects more women than men, it’s highly unlikely this will be anytime soon. If it was predominantly a men’s health condition then I’m sure they’d know what causes it and treat it accordingly. One minute it’s musculoskeletal, then the next CNS/neuro, then the latest is talks of autoimmunity. Meanwhile, you’re left to just “get on with it” and made to feel like it’s all in your head. One day you’re happy and healthy and the next you wake up with this condition and your life has changed forever, and it will never be the same again. You lose all confidence, self identity; you’re basically left grieving the person you were and the things you’ve lost. You have to adapt to new norms (that for others make you look lazy or a loner). You learn who your true friends are and lose a lot of people along the way. I’ve experienced a lot in my life but fibro has truly swept the rug out from under me. The NHS has no idea how to correctly support and care for patients. Sending them to a group setting pain management session isn’t helpful. Dosing them up on meds that don’t work, isn’t helpful. Ignoring new symptoms isn’t helpful. Also, looking at someone with fibro and telling them “you look fine” is ignorant and dumb. This is one of the worst parts of it, that you can be in the most excruciating pain, then can’t sleep from spasms, pain and shocks, then someone comes along, asks you how you are and you reply “not having the best day but trying” and you get “oh, well you look well” 🤦🏽♀️ Thanks, you look intelligent but I guess looks are deceptive!…
Wao I identify a 1000% percent with what you said. It is frustrating when I hear people tell me that I look OK. I have come to the conclusion that they need to experience what I am going theough to understand me because some people are not, they are too self-centered to understand. Even doctors are too. It aches my heart to the point that I don’t tell people anymore. I only tell a select few. It is a silent suffering. Look at Lady Gaga she looks perfectly healthy and she dances and moves and goes on tours and yet she is suffering with pain. I spend days at home just doing nothing because even if I do small cleaning I get very swollen and intense pain. I am always in pain but moving like walking 3-4 blocks, cleaning the washroom, cooking, etc is painful and extremely exhaustive. On my birthday, a neighbour insisted on celebrating it and I got dizzy 5 times, I never told anybody at the party that I was dizzy. I just sat down and waited for it to pass and go on as if nothing happened. I didn’t want to ruin the moment. As soon as I got home I went to bed until the next day. I couldn’t get off from bed. I am sad because I can’t do the things I love.
@@josieramirez9483 I understand and you’re not alone. I know it’s hard but try and adapt the things you used to love, or start the process of finding new things that bring you joy that are within your limits. I’m sorry you’re suffering with this ridiculous condition, too! Ridiculous because nobody seems to understand it or able to correctly treat it. People offering advice to ‘make lifestyle changes’ like diet, exercise, etc., is unhelpful. Like you, I can’t do much physically because it triggers severe flare ups. I’ve changed my diet, cut out refined sugars and junk, just stick to whole foods + don’t go crazy on carbs, it doesn’t help. I’ve tried the gluten free and dairy free, it didn’t help. I don’t smoke, never done drugs (only prescription), and I don’t drink alcohol. I’m still in the worst state I’ve ever been. When they say it’s not progressive, that’s a lie. Mine gets progressively worse and each year that passes there’s always more new symptoms that have been added to the list. It’s no life at all, but for the most part, they don’t know, or just don’t care. People can be ignorant to what they don’t understand. I really hope you find something that brings you joy, and build it out from there. Look after yourself 🫶🏼
@@mediteran4252 There is no way a real fibromyalgia patient will say "go and get" to another patient if something help them and someone ask for information. It's a troll at least.
It’s like living a safe nightmare, safe meaning you have a family, home, friends, Dr’s, who help but it’s still a living nightmare, the fatigue is the worst for me as I’ve gone from being a 110 miles an hour to 0, literally some days can’t do a single thing 😶😔
My teenage daughter has this and it overwhelming. She’s a senior and these are supposed to be some of her most fun years, but she’s struggling and it seems like not much helps. My heart goes out to all those suffering from Fibromyalgia.
My mother has been dealing with fibromyalgia since 2014. She has brain fogs and mood swings. I hate seeing my mother suffer. I’m sorry about your daughter, she’s lucky to have people who care for her ❤
I’m sorry for all who suffer from fibromyalgia, however I’m especially sorry for young people suffering this debilitating pain. 😞 I’m lucky in a way as I was diagnosed at 77, I’ve had it for a number of years. I can’t imagine having it for decades.
Wish my mother was this understanding about my fibro. As a teen....having fibro can be so taxing on our mental health. We never get a good nighrs sleep, we get so many secondary symptoms, focusing in school can be hard with fibro fog...etc.
More money should be spent on research for Fybromyalgie. But when this ground break will come is unknown
For me antidepressant helped massively. I couldn't stand up from bed now I can walk my dogs however the pain is always there
Glad they worked for you. They literally did nothing for me. Only Opiates and Adderall helped until I discovered Kratom.
Any added stress causes more pain in the body literally. It can isolate you aswell if you don't have a loving support circle
Maybe this could help you.. I learned to take a moment, specially in stress, to close my eyes and 'monitor' myself if I was unconsciously tensioning a muscle or muscles. Sometimes I still find some, and relaxing them takes some effort.
I have this. I am in bed all day today. I have put on a lot of weight. I try to exercise. Walking. Psychotherapy. Tramadol in small careful amounts is excellent for me .
More research is needed, but the sad truth is that as it affects more women than men, it’s highly unlikely this will be anytime soon. If it was predominantly a men’s health condition then I’m sure they’d know what causes it and treat it accordingly. One minute it’s musculoskeletal, then the next CNS/neuro, then the latest is talks of autoimmunity. Meanwhile, you’re left to just “get on with it” and made to feel like it’s all in your head. One day you’re happy and healthy and the next you wake up with this condition and your life has changed forever, and it will never be the same again. You lose all confidence, self identity; you’re basically left grieving the person you were and the things you’ve lost. You have to adapt to new norms (that for others make you look lazy or a loner). You learn who your true friends are and lose a lot of people along the way.
I’ve experienced a lot in my life but fibro has truly swept the rug out from under me.
The NHS has no idea how to correctly support and care for patients. Sending them to a group setting pain management session isn’t helpful. Dosing them up on meds that don’t work, isn’t helpful. Ignoring new symptoms isn’t helpful.
Also, looking at someone with fibro and telling them “you look fine” is ignorant and dumb. This is one of the worst parts of it, that you can be in the most excruciating pain, then can’t sleep from spasms, pain and shocks, then someone comes along, asks you how you are and you reply “not having the best day but trying” and you get “oh, well you look well” 🤦🏽♀️ Thanks, you look intelligent but I guess looks are deceptive!…
Wao I identify a 1000% percent with what you said. It is frustrating when I hear people tell me that I look OK. I have come to the conclusion that they need to experience what I am going theough to understand me because some people are not, they are too self-centered to understand. Even doctors are too. It aches my heart to the point that I don’t tell people anymore. I only tell a select few. It is a silent suffering. Look at Lady Gaga she looks perfectly healthy and she dances and moves and goes on tours and yet she is suffering with pain. I spend days at home just doing nothing because even if I do small cleaning I get very swollen and intense pain. I am always in pain but moving like walking 3-4 blocks, cleaning the washroom, cooking, etc is painful and extremely exhaustive. On my birthday, a neighbour insisted on celebrating it and I got dizzy 5 times, I never told anybody at the party that I was dizzy. I just sat down and waited for it to pass and go on as if nothing happened. I didn’t want to ruin the moment. As soon as I got home I went to bed until the next day. I couldn’t get off from bed. I am sad because I can’t do the things I love.
@@josieramirez9483 I understand and you’re not alone. I know it’s hard but try and adapt the things you used to love, or start the process of finding new things that bring you joy that are within your limits.
I’m sorry you’re suffering with this ridiculous condition, too! Ridiculous because nobody seems to understand it or able to correctly treat it.
People offering advice to ‘make lifestyle changes’ like diet, exercise, etc., is unhelpful. Like you, I can’t do much physically because it triggers severe flare ups. I’ve changed my diet, cut out refined sugars and junk, just stick to whole foods + don’t go crazy on carbs, it doesn’t help.
I’ve tried the gluten free and dairy free, it didn’t help. I don’t smoke, never done drugs (only prescription), and I don’t drink alcohol. I’m still in the worst state I’ve ever been. When they say it’s not progressive, that’s a lie. Mine gets progressively worse and each year that passes there’s always more new symptoms that have been added to the list.
It’s no life at all, but for the most part, they don’t know, or just don’t care.
People can be ignorant to what they don’t understand.
I really hope you find something that brings you joy, and build it out from there.
Look after yourself 🫶🏼
No one understand how much you suffer!
They don't understand what
fibromyalgia is
It’s an allergic reaction, that I over came and have no pain or fog or fatigue any longer. now I run my dog work draw drive shop and just live again
Please more details.When did you find out about it of fibromialgija.
What?
@@rosa.a.a.a96 yup all True story ! Go get your happiness back and start living again.
@@timgray5763 you should get psychological help
@@mediteran4252 There is no way a real fibromyalgia patient will say "go and get" to another patient if something help them and someone ask for information. It's a troll at least.
It is mold illness....period. I have it too.
What do I do to help
@@met3839 to help yourself with it?
DR RORPOPOR HERBAL ON TH-cam have the best fibromyalgia CURED in Africa..... natural herbs are the best.....💞💓
Curious why you believe that. I have fibromyalgia myself
Meh-I had zero exposure.
It’s really bad I agree….its like your always whining…..Patricia canada
If you don’t stop living in Ego you will never fix yourself you need to not want your old diet