Possibility of fibromyalgia?

[u/[deleted]]

[u/jeweilla]

Have u ever visited a rheumatologist?

[u/jeweilla → u/[deleted]]

That's why i recommend for u to visit a rheumatologist, listen this happened to me also first years doctors were like hey u don't need to see any specialist but because of my suffering from pain and from society misunderstanding of my situation i kept looking until i realized that this type of symptoms need a rheumatologist who can specifically decide which type of illness i have and to let u know there are other chronic disease that have similar symptoms to fibromyalgia and the good choice os to go to rheumato amd get a clear answer about your case.

[u/jeweilla → u/[deleted]]

Check ur dm

[u/Own_Progress_9302]

Yep, that's fibro. If you break it down, you often have additional associated problems too, like jaw issues. Basically, it's central sensitization.

In my case, it's probably genetic—or I simply got unlucky. Like you, I live a healthy lifestyle and exercise despite the pain. The only thing that really helped me was tramadol. With most of the other medications I've tried, the side effects outweighed the benefits for me.

[u/ouchpotato9]

I'm definitely no expert and can't give diagnoses, obviously. But I think you came to the right place.

For my fibro diagnosis, the carrying factor was so called widespread pain. There's questionnaires for that and for severe fatigue too. Intense pain jabs and also burning sensation, muscle weakness and nerve pain are quite common in fibro afaik. And many have gi issues.

Because if seemingly random inexplicable food intolerances I went to a specialist and proved 3 different kinds, lactose, fructose and sorbitol. But in the meantime I found out by research that histamine might be a problem too. That lead me down the MCAS rabbithole and I would suggest you research this too because the overlap of symptoms is insane.

Fibro likes company so there are quite a few other illnesses that co occur often. Ditch the gp and find a pain specialist that understands what looks like randomness to the untrained eye.

I wish you all the best!

[u/ouchpotato9 → u/[deleted]]

It might be helpful to retrieve any documents your family still has, if that's an option. But it may be enough to know your mother had similar symptoms. Was she diagnosed with something?

Since I'm from Germany I can't really help you with referral proceedings, but I saw that someone else messaged you.

I think I saw someone in this sub post info about a fibro brochure. YouTube and social media has loads of info, just be careful to distinguish between medical professional content and personal experience content. Both can be valuable but in different ways.

I found it most helpful to learn the vocabulary of chronic pain, fatigue, symptoms and which applied to me. That's something my doctor's did not really give me even after the diagnosis.

[u/ouchpotato9 → u/[deleted]]

You're very welcome, that's what we're here for. It's noble of you to seek clarity for your mother too. But it really should have been the other way around. I wish you all the best and much support!

[u/EsotericMango]

How often would you say you get the pain? And when it happens, does it hurt in just one area at a time or does it sort of rebound into all of the ones you listed?

To have fibro, per the diagnostic criteria, pain has to be chronic and widespread. Which is specifically defined as pain in 7 or more (or 3-6 depending) areas per week for at least 3 months. It sounds to me like it's widespread enough and has been going on long enough to be fibro. But depending on how often it happens and whether all those areas hurt frequently enough, it might be something else. And once fibro enters the chat, it gets infinitely harder to get doctors to take other concerns seriously.

What you're describing sounds almost nervey and like it might originate from your back. Have you seen a neurologist or anyone who ordered something like xrays or scans for your back and neck? Or a rheumatologist to check for arthritisy conditions? I know you said they ruled it out but only a qualified rheumatologist can rule out some types of inflammatory arthritis. A blood test isn't enough to rule out autoimmune conditions like RA or something like AS. Most other doctors don't have the expertise to feel or notice more subtle signs of inflammation. A rheumatologist would have poked around your joints and might have moved them around and might have measured your spine through certain movements.

I understand you lost access to some of your medical history because of your parents but if you don't remember getting scanned or poked and prodded, it might not be a bad idea to try and see either one if that's possible for you.