Diagnosis : Hi I was wondering how you... - Fibromyalgia Acti...

Fibromyalgia Action UK

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I was wondering how you found out that you had fibromyalgia? I have an underactive thyroid and I know that we are at risk of fibromyalgia.


15 Replies

Hi Alison, i actually got diagnosed fibro by my rheumatologist, i was tested for everything they could test for, 11 bottles of blood all at once - and a physical exam too - after reading my notes though it was suspected years before hand so was ME that diagnosis Neurology gave me and after over 8 years of having borderline thyroid tests and that being ignored, i finally got a different GP to test it properly and i have Hypothyroidism too - Hashimoto's they think but the GP said it doesn't matter what one its same treatment! xx Take care xx

Alihoy in reply to hen-house

Hi Hen, I have hypothyroidism but recently I have been getting pain in body such as in my joints and back, also a feeling of weakness in my back.

I know that those of us with hypothyroidism are possibly at risk of getting fibro.


hen-house in reply to Alihoy

Yes they say they can tend to come as a package - have you got a good GP you can speak to when we are allowed to go to actually see the GP? I would take it easy and try and rest more when you feel you need to for now and then get it checked but i find a nice hot bath or shower is very soothing for the pains, but an hour or so after i almost feel more in pain? Take care and im here if you need any advice xx

Join Thyroid UK forum on Healthunlocked

Learn about importance of FULL thyroid and vitamin testing

Inadequate dose levothyroxine and/or low vitamin levels leads to low Ft3

Low Ft3 strongly linked to fibro

Alihoy in reply to SlowDragon

What is Ft3?

SlowDragon in reply to Alihoy

Link explaining thyroid


Vast majority of thyroid patients have autoimmune thyroid disease, called Hashimoto’s


Explaining Ft4 and Ft3



I've had a bad back for years, and a weak back to the point I can't sit up or stand up for long, I slouch propped up on cushions have done for about 20 years, been to physiotherapist and got told it's weak back muscles and to do exercises but that made it worse,

I've got stiffness all over my neck and shoulders and was told its my anxiety making me tence up

Back and forward to the doctors for years with bad back, then I started feeling aches all over about 3 months ago, felt like the aches you get with flu,

So I googled "why do I ache when I wake up" and fibromyalgia came up, I had almost all symptoms so I actually mentioned fibromyalgia to a nurse got booked in for blood tests to rule anything else out, then a doctors appointment who done the tender point test, I'm now on amitriptyline

I'm also back on mirtazapine for sleep as the stress over this coronavirus is making my sleep worse

Alihoy in reply to Hidden

I’m currently on quintapine for my mental health problems and i think it makes me sleepy but I am not sure.

Hidden in reply to Alihoy

Yes I've heard it does make people sleepy, I was on that for 3 days and had weird side effects lol, I could hear people on tv laughing and they sounded like the joker, I'm not even sure I know what the jokers laugh sounds like but they made me loopy lol, and I kept doing something with my mouth and got paranoid it was that

tardive dyskinesia so stopped them

I was seeing a Rheumatologist for Raynauds and out of the blue he said you have Fibromyalgia also. xx

I was diagnosed by a new doctor at my surgery about 5 years ago. She listened to my "pain" stories, noted that I had been having back problems for years, which was "muscular" rather than spinal. She diagnosed moderate depression, anxiety and OCD thoughts after the birth of my 2nd child. I had all the relevant blood tests to rule out other possible causes to my pain and fatigue. She did the pressure test, which was sore and she explained that light pressure should not be sore. She suggested fibromyalgia, I began to research it and my whole life's troubles (the pain ones) fell into place.

I hope that my story helps you.

My GP initially diagnosed me, then another physician confirmed then a Rheumatologist.

Hi Alison, mine started back in 92 when I was pregnant I had 24/7 morning sickness I thought it was high hormones and a stomach ulcer. After I had my daughter all stomach problems stopped 100%! Other symptoms improved but didn’t go away. Best way I could described it back then was I would get sick when ever I did too much. After a move a crossed the state to a high altitude cold climate I was still having these episodes of feeling sick stomach and back pain entered the scene. This was bad back pain that over the months that Tylenol didn’t help, ibuprofen didn’t help, alieve didn’t work so tried Downs back pain pills didn’t work so I went to the doctor who ordered a couple of tests which he wouldn’t give me anything until I had both tests down. After the test I asked him for something to help the pain. After that he gave me these wonderful miracle pills that took 100% of the back pain away. I felt human again! Such a wonderful feeling to be out of pain. Gall bladder function test came back not functioning right so it had to come out. So after surgery all stomach problems was 100% better. Long story shorter after seeing all these doctors that friends and coworkers recommended I was finally diagnosed with fibromyalgia and CFS in 94. 😒 I have been involved in 2 different studies on fibromyalgia and chronic fatigue syndrome in hopes of finding a cure. I had a bunch of different tests and lab work done to rule out other possible illness that would cause the symptoms I was having. Sorry this was long. I had hypothyroidism too with goiters. Okay I think that was all that was going on back then medically. I saw all sorts of specialist including rheumatologist, gastroenterologist, orthopedic surgeon, internist and endocrinologist. I hope you get to the bottom of and find answers as to what is going on with you. 😊💕

It’s a diagnosis of exclusion so my story was to suffer with vague symptoms for 18 months being ‘monitored’ then eventually see a rheumatologist who in about ten mins had me sorted. He did an exam, took a history, checked the frequency and level of my symptoms and gave me a leaflet about my condition... once I got to see a specialist it was easier. We ruled out anemia, ME, virus, infections etc first tho.

Jwill148 in reply to Sway

Hi Sway, so pleased you were sorted. Can I ask if you take any medication? Kind regards. JW.

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