Mis-diagnosed with fibromyalgia

Long story short, I have been having joint pain since March 2017, worsening of migraines, slurred and dis-organised speech and general fatigue sleep issues, irritable bowel and bladder, Pudendal nerve damage that is already being injected with steriods. Rheumatology stated no inflammation (although this was present initially at appointment).

January 2019, further symptoms of pins and needles, jerking legs. I returned to g,p who sent me back to the rheumatology department who suggested fibromyalgia was the best fit at the time. This was 6 weeks ago. Since then I have had pins and needles mostly on my left side. Arms, legs, hands, feet… with the past few days being horrendous. Worst migraine ever with burning and shooting pains in my head, pins and needles down my spine as well as all the previous sites. The jerking of my legs has also begun to happen when walking not just at rest.

I just don’t know what to do anymore, I don’t want to do the wait and see approach when M.S hasn’t been ruled out! Help!


In general, doctors don’t rule diagnoses in or out. They look at your symptoms, discuss your history and do a physical examination. They will then determine whether there is a neurological problem, and if so, which tests are needed to ascertain what the problem is.

Thus far, you’ve seen a rheumatologist, who has diagnosed fibromyalgia. If you’re unhappy with this, and believe your symptoms come from a neurological cause, then why not go back to your GP and ask for a referral to a neurologist?

There is often an overlap of symptoms from one diagnosis to another. Often people are diagnosed with fibromyalgia when they think there are potential neurological issues that have been overlooked. Just don’t rely on MS as being the cause of your symptoms.

Best of luck.


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Thank you Sue xx

I did go to the g.p on Friday morning, but I had a migraine and couldn’t really discuss the new symptoms with her. She suggested I come back next week. I just want to make sure I am taking the correct medication and seeing the correct people. New symptoms just keep cropping up or the original symptoms get worse over time. The amitriptyline doesn’t seem to be doing anything.

In terms of the ‘ruling out’ that I discussed, this was stated by the rheumatologist. They said if no other cause can be found for pain through blood tests etc then it’s likely to be fibromyalgia and that the way they diagnose now is to rule out other causes first?

Thanks for responding to my message. x