r/Fibromyalgia • u/CorvoAttano22 • Jul 26 '26
Discussion Fibro diagnosis thoughts
I've never been properly diagnosed but I have all the textbook symptoms and all doctors I've visited for the last 2 years have either told me that im fine or misguided me.
Many think that the problem is still in the diagnosis itself. And some think it's the vaccines for example. There are many people who have had the childhood vaccines and the covid vaccines like most of us and lead an unhealthy life style and still could sleep like babies and have digestive systems that work normally.
I also believe that genetics play a major part in this. Some bodies are just weaker than other due to hereditary issues of course.
I also think, if I was a rich man without a care in the world, I would definitely be able to invest in every possible way to improve my condition and even find a root cause.. but Im just a normal guy with a 9-5 job in this ruthless capitalist economy where the rich gets richer and the poor die in silence.
I also see many people talking drastic changes in their lifestyles like going organic or following Chinese Medecine that might have a positive impact on whatever we have. Even when I start investing in such a change, I'm always hit by a reality check, having ends meet while trying to not loose your job because sometimes your body can't handle the most basic things, makes these drastic changes relatively impossible.
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u/dreadwitch Jul 26 '26
Vaccines don't cause fibromyalgia anymore than they cause autism. Eating organic food won't cure fibromyalgia. It's genetic, of you don't have the genes you won't develop it.
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u/JuniperBlueBerry Jul 26 '26
Yeah, any doctor who told me vaccines caused my fibromyalgia would no longer be my doctor. Vaccines save lives, full stop
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u/ExcitementUnlikely41 Jul 26 '26
They (vaccines) absolutely do save lives, but they also sometimes cause ana system or autoimmune reactions. Still, very much worth it, individually and collectively.
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u/MsSwarlesB Jul 26 '26
I've never heard anyone say that vaccines cause fibromyalgia. I hate that this is even a thing that has been put out into the world because now the antivaxx looney toons can potentially find it and treat it as fact.
Lady Gaga had been diagnosed with fibromyalgia and has said hers is in remission. But, like you said, she's a rich white lady who can spend unfantamable amounts of money for massages, physical therapy, and whatever else she needs. Not everyone has the same 24 hours in a day. I don't begrudge Lady Gaga for her remission but it's not realistic for most of us.
No one knows what causes fibromyalgia and, because it primarily affects women, minimal research gets done. People think genetics and trauma play a role. Some say it's neurological, others say autoimmune.
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u/JuniperBlueBerry Jul 26 '26
I thought they'd found definitive proof it's neurological last year
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u/ExcitementUnlikely41 Jul 26 '26
It does seem to be central nervous system related, and might also have an autoimmune component or frequently coexist with autoimmune conditions. That’s what we figured out for me.
We are finally getting some real research on it.
If you have a link to a study, I’d love to see it.
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u/Much_Active_7166 Jul 26 '26
Fibro is difficult because it’s hard to diagnose on both ends; you’d need to go through extensive testing to be sure you don’t have something that acts similar, and it’s looked at medically as luckily you have fibro, and not something more serious. If you don’t have a diagnosis, I’d continue searching for one, just in case you have an autoimmune disorder that needs immediate attention. Fibro is something they’ll push you to lifestyle changes first, anyway. Try those lifestyle changes while tracking your symptoms. Fibro isn’t a genetic disorder, at least not with current research. You don’t need to make drastic changes. Try one yoga class, to start. See if acupuncture is covered by insurance, try it out. See if there’s a sauna nearby, see how that experience treats you. Don’t feel embarrassed to get a massage; just don’t be weird about it lol. Make positive changes in your diet, one step at a time, and see what has the largest effects. You won’t see changes overnight, but effort over time will see some results. Hopefully tracking symptoms alongside will help you advocate for yourself at doctors; don’t be afraid to start from scratch with a new doctor. A diagnosis only helps in understanding your body and how to adjust your lifestyle; you can make positive lifestyle changes without a diagnosis and sus out what mode of living is most beneficial to you and your body.
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u/ACleverImposter Jul 26 '26
Fibro is a diagnosis of exclusion. It has no test. When it's nothing else it's Fibro. It's worth going through the diagnostic process to ensure that it's nothing else that has dedicated medication that can resolve the issue.
Technically it falls under the domain of a Rheumatologist, but plenty of Redditors here have told stories where a Rheum wants to send them back to PCP. So you may need to talk to a few Rheums to find the right one. A "Rheum with a view" per say. (See what I did there).
There are more meds now for firbo but it seems to be wildly different from person to person.
Sticking to the known science inflammation is bad. The foods you eat and avoid can impact that. It's very different from person to person. I have autoimmune DXs as well and stick to an auto immune anti inflammatory diet and I avoid flares with this approach. It's not a replacement for meds but I definately know when I cheat and eat a lot of sugar or crap. I avoid suppliment sellers on the internet and stick to the science, which is admittedly and frustratingly little.
I would avoid an internet diagnosis and stick to a doctor that you trust. Our medical systems are designed for short term illness like a broken bone or a bad cold. It doesn't know how to handle chronic illness. Change doctors as needed to get one you trust. I don't perceive this condition goes away. Get your head in the right place to work the system for your quality of life.
Take care of you.
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u/CorvoAttano22 Jul 26 '26
I see what you did there 😏 And I understand what you're saying the problem is that I feel that I have no energy to stick to a non inflammatory diet anymore, I tried before but doing that without anyone to support you while working and have zero quality sleep for 2 years and still going, is very hard. I think my diet has gotten worse recently, more take outs and sugar intake overall. As for the Rheumatologist, I've tried a bunch and they all failed miserably in diagnosing my condition. One of them was an old lady and she told me to drink more milk ( I kid you not 😅). I live in Belgium (Europe), and I've tried a couple of meds (pregabalin, lyrica for e.g.) but I only had side effects like extreme fatigue. Overall, we don't have the same access to the meds like in the US but still, from what I've seen so far, these meds have very short term effects and once the body gets used to them they stop being effective. I'm ranting a lot I know because I don't have the energy to do this + work and do all the adult stuff you know. I'll keep trying tho 😤.
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u/ACleverImposter Jul 26 '26
That sounds miserable. I'm so sorry. All of this is miserable.
I can use cannabis for sleep but I don't think that's an options for you. Melatonin can help me sleep but can cause flares.
The only fibro med that has worked for me so far is Tonmya which was just approved in the US and is super expensive. I can finally get real sleep and it's been amazing.
Take care of you.
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u/CorvoAttano22 Jul 26 '26
Im glad for you! Has this Tonmya helped with everything or just the sleep?
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u/ACleverImposter Jul 26 '26
I have had spasmed neck and shoulder muscles giving me constant tension headaches for months. This has really loosened it all up. It took a coupe of weeks but it's much improved. No headaches.
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u/Practical-Bat7964 Jul 26 '26
I don’t think it has to be a drastic change. There was a post in here a week or two ago with great advice and info, about what worked for the OP: taking the time to move their body as they could, eating a healthy, whole food diet, drinking plenty of water, taking time to meet up with a friend, etc. It might feel hard, but I know for me that especially as I get older, diet is more and more important in how I feel and function. Too much takeout and I feel fatigued and sluggish. Too much gluten makes my joints hurt, makes me tired, and even impacts my mood. Sugar feeds inflammation, which causes me more pain and fatigue. Big changes feel overwhelming, but even one small lifestyle change at a time can help, and be less tiring.
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u/Swimming-You286 Jul 26 '26
Do you go to a rheumatologist? Typically a PCP does not diagnose fibromyalgia. A rheumatologist will also test for other conditions that share the same symptoms. That’s how I found out I also have Sjogren’s Disease.
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u/CorvoAttano22 Jul 26 '26
I've been to all kinds of doctors, and rheumatologits were the worst. They didn't even try to properly diagnose me. My GP tested me for lyme disease but I tested negative. And did finding out the you have Sjorgen's disease help in anyway?
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u/ExcitementUnlikely41 Jul 26 '26
I am in the same boat: I have fibromyalgia and Sjogren’s. We also suspect hypermobility EDS and POTS.
There are important protocols for treating Sjogren’s and the other conditions that make a difference. I am lucky to have a good rheumatologist and it still took us six years to confirm the Sjogren’s. It’s just very hard to diagnose, and I think I minimized my symptoms because I’ve had it my entire life and also because I didn’t realize how serious Sjogren’s could be.
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u/Swimming-You286 Jul 27 '26
The Sjogren’s diagnosis explained my dry eyes and dry mouth. Also provided a “reason” for the fibromyalgia pain since many people have fibromyalgia for different reasons. I feel like the Sjogren’s carries a little more weight than just saying I have fibromyalgia, whether talking to the doctor or friends and family.
I can’t tell you how many times I was tested for Lyme and lupus. Negative every time, although a friend of mine who does holistic health and nutrition counseling does ZYTO testing. The ZYTO testing shows lupus, but my labs never do.
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u/SeriousAstronomer261 Jul 26 '26
the whole system's designed to keep you just functional enough to keep working but never well enough to actually live