ME / Fibromyalgia - what’s the difference in symptoms please?

[MEwhatnow]

Really struggling and GP has referred to a rheumatologist as all other tests are clear so nothing more they can do

Really worried about trying to go back to work / move around a lot as it seems to spark the agonising pain off again and completely wipe me out but for fibromyalgia you’re meant to exercise and for ME you’re meant to rest - when you don’t know which one you’re dealing with, what the hell do you do?

Thanks

From what I remember fibro pain tends to be more specific pinpoints rather than general whole body.

I had ME for 6 months, it was horrible. I hope you get some answers soon.

Fibromyalgia has trigger points , pain messages are amplified in the brain which can cause debilitating pain, through your whole body. It’s difficult to live with but so is ME.As for exercise l wish l could! Hope you get a diagnosis soon🌟

ME/CFS is characterized by fatigue, fibromyalgia characterised by pain.

They're both very real but also absolute bullshit diagnoses that just describe a set of symptoms. Could be caused by many things.

This. What else has the rheum tested for? Full bloods/ultrasound/X-ray/ct been done? It could be so many other things from Eds to vitamin deficiency or thyroid disorder to an autoimmune condition/vasculitis but gps are quick to diagnose me or fibromyalgia without investigating everything else first. Ime they're caused by something rather than being a stand alone condition

Full bloods have been done but wait for rheumatology is around 5 months apparently 😢

I’m in agony but also can’t keep my eyes open so it’s really hard to tel what on earth is going on

All started after covid 2 years ago

I was diagnosed with fibromyalgia and suffered for years but it presented like MS and they had no clue why or what it was.

Anyway, I've been through some shit recently and come to realisation my marriage was abusive. Been diagnosed with a neurological disorder during this time which it's main cause is psychological trauma such as abuse.

Now I'm not in that marriage, all my symptoms have vanished, after years of constant pain, fatigue and mysterious illness.

They don't always get it right.

Sounds like post viral fatigue OP aka long COVID if directly correlating with a COVID infection.

There is a lot of crossover between the two conditions so there may not be a clear separation between the two, nor there are objective tests to confirm either of the diagnoses. Fibromyalgia is characterised primarily by pain, ME/CFS is primarily fatigue. To meet diagnostic criteria of ME/CFS you need to meet all fo the criteria: fatigue which significantly impacts on your function, sleep disturbances or unrefreshing sleep, difficulties with cognition, post-exertional malaise (delayed onset symptom exacerbation on increase in activity which lasts several days or more) and that your fatigue cannot be explained by any other condition. ME/CFS is typically, but not always triggered by a viral infection or traumatic event.
Exercise (or "movement" rather) is equally important with fibro and ME. You should watch how much exercise you do and make sure to balance it with periods of rest (i.e. pacing) but it is not advised to stop all physical activity.
There are some good resources on ME association website.

You can appear to have both when actually there is an underlying cause - which the rheumatologist will look into.

Do you have any pain meds?

Whatever your condition is called, if you suffer from post-exertional malaise, you need to learn to rest and pace. PEM means fatigue and other symptoms which come on after activity (not necessarily as energetic as exercise) and are totally out of proportion to that activity. Can come on immediately or up to a few days later. Then lasts a ridiculously long time. PEM can include pain so it is hard to tell ME and fibro apart. But yes, you have to avoid exercise if it causes PEM so take care of yourself and don't be coerced into activity programs that are too much for you. A good rule of thumb is "never go into the red zone".

Gabapentin which is doing nothing

Fluoxetine which also feels like it’s doing nothing

This is awful

I went on Gabapentin, Fluoxetine and last ditch was Tramadol and nothing worked.

Hi op. I was diagnosed with fibromyalgia about 6 years ago via the rheumatologist. I had lots of blood tests plus X-rays on various pain points including mri. My main symptom is actually overwhelming fatigue that I've had on and off since my early adulthood. I'm now 50. Something that was flagged up in my bloods was a condition called parathyroid disease which presents itself a lot like fibro. Its not the thyroid gland but is behind it and controls the calcium, vit d and other things in the endocrine system. So I've been on yearly observation but so far the consultant doesn't think I'm bad enough to consider surgery so I'm still down as fibromyalgia with arthritis and possible parathyroid issues! It's such a nuisance as my life is completely dominated now by my symptoms. I would ask for the doctor to check your parathyroid and calcium levels as it's amazing how many people struggle with this but doesn't get picked up. Sorry if that's not answered your main question but I just wanted to make you aware x

I would say make sure the basics are also tested- vit d, vit b12, iron, ferritin, thyroid etc as they can all cause similar symptoms and as with anything that disproportionately affects women (esp middle aged ones) are dismissed as insignificant despite causing massive issues and being easily solved (apart from thyroids which aren’t as straightforward as the nhs likes to think).

Also don’t dismisses the physical effects of psychological stress and trauma in life (which isn’t AT ALL to say that it’s all in your head, just that those can manifest as physical pain as your body is trying to protect you from further harm)- see The Body Keeps Score.

That's weird, I've just started reading that book! Very interesting and makes a lot of sense, same thing my neurologists are saying, psychological trauma, fight or flight etc.

I have b12 injections and can’t absorb b12 for some reason but all the other bloods are normal

This isn’t physiological - im in agony and can’t keep my eyes open 😢

Bump