Fibromyalgia sufferers... AIBU to think this isn’t it...?

[CrunchyKnot]

The pain I experience is like I can feel all of my bones, right into my toes and fingers. My ankles feel like I have clipped them with a scooter IYKIWIM. I thought fibro was more muscular. I can also sleep for 24 hours. And then sleep again. Should I be getting a second opinion?

Hopeful bump

Pain and fatigue are classic fibro symptoms. Both are quite personal so I don’t think they’re universally experienced in the same way. Perhaps you can share what tests you’ve had?

I’ve had my bloods done - all fine

Sometimes I can’t lift or use my arms which is more muscular I guess

My fibro pain can be right into my joints.

Many doctors are actually very against a fibromyalgia diagnosis as it's often given as a "go away" diagnosis. Fibromyalgia is just "muscle pain", it's a symptom, not a disease - there's another cause. Push for a better diagnosis because, very often, a fibromyalgia diagnosis is just a doctor saying they don't want to invest any more time/energy/resources into finding out what's wrong so you just have to deal with the symptoms or live on symptomatic medications forever. Anyone diagnosed with fibromyalgia should be asking their doctor "why do I have fibromyalgia, what is causing it and what can we do to sort it out?".

I've got ME and I always get it in my joints. Feels like they're being crushed by a metal plate, or a jackhammer
Fingers and toes feels like they're being trodden on by steel toe boots.

Could you be peri menopausal op?
Low oestrogen can cause awful joint and muscle pain.

Would it show up in a blood test if I am peri menopausal?

The GP says it has been brought on by a sustained high stress living environment (abusive partner).

I don’t want to take pills for the rest of my life but it’s unbearable without them

I had this diagnosis but I'm mostly fine now, my solution, divorce and a wonderful new partner

I do get flare ups but I can head it off by taking it easy and getting enough sleep and balanced food

@CopperBear

Many doctors are actually very against a fibromyalgia diagnosis as it's often given as a "go away" diagnosis. Fibromyalgia is just "muscle pain", it's a symptom, not a disease - there's another cause. Push for a better diagnosis because, very often, a fibromyalgia diagnosis is just a doctor saying they don't want to invest any more time/energy/resources into finding out what's wrong so you just have to deal with the symptoms or live on symptomatic medications forever. Anyone diagnosed with fibromyalgia should be asking their doctor "why do I have fibromyalgia, what is causing it and what can we do to sort it out?".

That is interesting. We have a situation in the family that could apply to. Have you got a source or reference along those lines a patient could point to please @CopperBear ?

@motogogo

I had this diagnosis but I'm mostly fine now, my solution, divorce and a wonderful new partner

I do get flare ups but I can head it off by taking it easy and getting enough sleep and balanced food

So glad to hear this 💞 I’m still in the break up phase so maybe it will get better

I've had fibro for many years and have found that each sufferers symptoms can be very different to someone else. Firstly, you need to get a correct diagnosis by visiting a Rheumatologist. For me personally I dont take any meds as painkillers don't help. I went on Gabapentin for a few months and it helped with pain only on some days. Unfortunately, i had serious side effects. I have found that a clean diet, keeping my weight down and 8 hrs of aerobic exercise weekly has reduced my pain level significantly. For fibro it doesnt seem that one solution fits all. A Rheumatologist will start you on the right path.

Have you had your thyroid checked.

Can I see one through the nhs?

Have you had your thyroid checked. Properly. Virtually no one gets it done properly on the NHS

Sorry duplicate message. MN messing up for some reason.

Gp checked thyroid

I dont know about the NHS as I'm not in the UK sorry.

My Fibro is a complication of my other autoimmune diseases. For me joint pain is a feature in particular hip, ankle and shoulder pain.
I take all the pain meds - Gabapentin, naproxen and paracetamol (I know I'm missing opioids, but they make me sick) . As without them I wouldn't be able to get up in the morning.
Stress makes me worse so 15 months of the hell that is veterinary practice currently and I am nearly on the floor. Honestly I can't remember what it was like to live without pain or to have a good nights sleep .

Many doctors are actually very against a fibromyalgia diagnosis as it's often given as a "go away" diagnosis. Fibromyalgia is just "muscle pain", it's a symptom, not a disease - there's another cause. Push for a better diagnosis because, very often, a fibromyalgia diagnosis is just a doctor saying they don't want to invest any more time/energy/resources into finding out what's wrong
I absolutely agree. My Rheumatologist slapped that diagnosis on me when I talked about pain which wasn't exactly related to my RA. It infuriates me because I do not believe fibromyalgia exists it's just used to fob people off. Yet so many people seem to suffer pain and debilitating symptoms that are labelled fibro.

I always thought fibro was a thing in itself, not as a result of another condition or issue. My yd has JIA/RA, hypermobility, and thinks she has fibro as her skin hurts to touch, even up to ten mins after touching it.

For me it was a process of elimination and diagnosis by a rheumatologist finally. As well as pain and tiredness, I have odd things like pins and needles, sensitivity to cold, heat, light, touch, pain and noise. Migraines and Raynauds.

I’m looking into Vitamin B12 deficiency just now, my blood tests have always been fine as a supplement but the thought is now that supplements may not be enough as in some people it cannot pass through the stomach so the cells are deficient so injections are required. A lot of people are incorrectly diagnosed with fibromyalgia are finding out it’s Vitamin B12.

There are some good groups on Facebook for fibromyalgia, with pages of people's symptoms. You might find it helpful to join to see if yours are similar.

I've always wondered how many people diagnosed with Fibromyalgia actually have MS or Ehlers Danlos. Because as a PP said, it's a go away diagnosis.