I would be interested to know how any of you first thought/realised you had fibromyalgia? I had unknowingly had various symptoms for many years which included intermittent sharp pains, deep muscle aches, face pain, frequent indigestion, insomnia, tender thighs, headaches etc. Every one of the aforementioned symptoms surfaced at the same time recently which culminated in being given some tests by my Gp and my fibromyalgia diagnosis.

23 Replies

  • Hi Mandy

    Like you, and probably most people I've had many of the symptoms to varying degrees, on and off over many years and not realised or been diagnosed with anything for most of them. It was about five years ago when I had a massive ME crash and the fatigue kicked in with avengence that I was finally diagnosed with ME because at the time the fatigue and PEM were my biggest problems. Should have been obvious to my doctors as I have had problems with persistent viruses for years and years and they were all aware one of my sisters has been diagnosed with ME for nearly 30 years now.

    It was only this year that I noticed the aches and pains were getting much worse (as if you would miss that eh!) and began to wonder myself whether I was developing fibro too. Sure enough my GP confirmed it with the pain point test. But to be honest looking back I've had all the symptoms since the very beginning. It just seems to depend on what is affecting me the most at any one time as to whether it's my ME flaring or my fibro. Or at times there is not much difference between the two so it can seem like they are both flaring. Deep joy eh! :O

    And the last time I was talking to my sister she was saying much the same thing, she strongly suspects she has both but after 30 years of no treatment whatsoever she can't see the point in getting a diagnosis to confirm what she is frankly more aware of and knowledgeable about by now than most of the doctors that she sees.

    Gentle hugs


  • Thank you for sharing Margaret, I hope you are coping well at this time.

  • Margaret....I think you have written the story of my life! They are mirrored in every way!

    Jo x

  • I was diagnosed after several years of symptoms, I used to run for miles every day and quite suddenly I felt like I was running through water and was exhausted. My GP put all the symptoms together and sent me to a Rheumatologist and diagnosis was made. Its been many years since diagnosis I was in my thirties then, 61 now and have to factor in getting older. The main tip I can give anyone new to this is to watch your diet, I carried on regardless as though I was still active and gained lots of weight which was/is difficult to shift and keep off. I am more fortunate than many in that I have excellent care and family support. All best wishes. Lou xx

  • Kind of you to share, Lou, I'm not sure but I think some severe stress may have brought all of my symptoms out. Is stress known for doing this?

  • I believe that it can be a trigger however Fibromyalgia is a complex condition, when we mention a flare it is often due to the stress caused to our bodies from being in pain constantly xx

  • Thank you Lou, it's all very daunting, today my muscles are jumping a lot, just like before you doze.

  • Stress most definitely is one of the triggers, certainly of ME and I suspect fibro too. I don't know if it can do it on its' own but part of the reason why I had my big ME crash was to do with physical and emotional stress at both work and home over a long period of time. Coupled with a non-stop cycle of various viral, bacterial and fungal infections so my immune system was just under constant attack.

  • Fibromyalgia definitely seems to have many strings to its bow, thanks for replying.

  • I think that i and the doctors agree that my fibro was triggered by a bout of pnuemonia and an operation to to clean out my lungs and to sever a nerve causing the problem of food getting into my lungs.

    After that i started to gain symptoms one at a time. First i think was RSL. Then IBS, tinnitus my energy levels gradually faded.

    Then in 1998 i had a mystery illness. Pain everywhere, BP through the roof and multiple organ failure. All that the doctors could find were signs of a virus. I spent weeks in hospital and the cause was not found, now after having fibro flares i know that it was a virus but blown out of all proportion by a fibro flare.

    4 months later i was told that i could return to work and the company i worked for had closed down. I got a part time cleaning job at a test laboritary I was with them until they closed down 11 years later, but by then i was already undergoing tests for muscle pain and weakness. That was when i was diagnosed, 30 yrs after the pnuemonia.

    My last doctor suspected that all my ailments were related and would probably have picked up on it if he had not retired.

    My present doctors sent me to see a neurologist and it was he who gave me the diagnosis.

    I blame no one for not picking up on it earlier as i tended to get one thing after another and most of the time i was pretty fit walking miles with the dog before doing 4 hrs cleaning, doing most of the housework. the worst i got was aching muscles after being with people who had a cold. I dont get colds i have 2 day sniffles maybe once a year or less and occasionally i would have foggy dizzy days.

    They puzzled me but as all tests kept coming back clear i wasnt really worried. I am very greatfull that i had those 30 years when i could live life as i wanted and it also made it easier to accept. As i said to my GP " I have lived with this for 30 yrs so i can carry on living with it."


  • Thank you for your story, I really hope you are currently feeling as well as possible.

  • Hi Sue, your illness almost mirrors mine, I too has years of aches and pains and different unrelated illnesses, then n 1998 the same year as you I was taken ill rushed to hospital for a blood transfusion And multiple tests, was then diagnosed with RA and treated for that.untill 2010 when a new rheumatologist decided it wasn't RA after all but fybro and osteoarthritis suddenly it all came together, I'd probably had fybro all along and for many years, I remember being told the pains in my legs were growing pains when I was a teenager, like you I have accepted it now , though it's been very difficult, take care

  • I am sure that i didnt have full blown fibro as a child but a few things make me wonder if perhaps i had the edges of it, thats the only way i can think of describing it, I could never get warm i would pile blankets on my bed and then all the spare coats as well.

    Then as now i didnt get colds And when i did or do they are very mild and last 2 or 3 days.

    Sensitivities to smells. Bright lights ect.

    Just little things no pain no fatigue.

    But these could have been brought on by the stress of my mum death. I was 7 seven and it is still as clear today as it was then.

    Maybe with some people it builds up over time getting a bit worse each time they are stressed and with it building up slowly we get used to it a bit at a time and we think of it as normal.

    And then bang you get one stress too many, and the fibro monster breaks free.

    Ooops i think that i have been rambling. :P :D

    Bed time vets early tomorrow. nite nite.


  • Hi Arymretep,

    I was interested in what you said especially about the leg pains being diagnosed as growing pains. My 23 yer ld daughter has ME and one of my twins I've also been worried about. Shes constantly tired, and always saying her legs, thighs and knees hurt. I have wondered about Fibro or ME with her but too scared to even broach that subject as don't want to worry her!

    jo x

  • I think I was very fortunate as I was diagnosed fairly quickly as I went to see a private consultant. I had arthritis and very bad back pains and after a fall due to a compressed sciatic nerve I underwent quite a few tests and got a quick diagnosis.

    All my hopes and dreams for you


  • Thanks Ken, it's encouraging to know that there are some effective practioners. I hope you are having a good day.

  • I was being treated for Rhumatoid Arthritis for many years even tho my blood tests kept coming back negative. It was only when I insisted on seeing a Rhumatologist that I was told I had Fibromyalgia. I had never heard of it and thought I was being fobbed off! Once diagnosed all my other concurrent symptoms made sense!

  • Yes Sue, all the pieces of the painful puzzle fit together when a diagnosis is made. I hope you are feeling as well as you can be.

  • Me too Sue 😀

  • Hi

    I can't really place exactly when I started having fibro symptoms as I have lupus and hypothyroid as well and so many symptoms overlap.

    I was diagnosed when I had an attack of Temporal Mandibular Jaw Disorder and the rheumatologist did the pain test. I had been having many flares of what I thought was the lupus playing up but the blood tests showed no worsening condition for that, so that left fibro and the TMJD, neither of which I had heard of before.

    My GP had raised the possibility with the rheumatologist without my knowledge so he must have considered it, he just needed confirmation.

    After a bit of investigating it was fairly obvious really, all the signs were there, just I didn't know it was a separate condition.

  • Thank you for sharing your journey to diagnosis, I hope you are as well as you can be.

  • My very first inkling that something was wrong was on a damp night coming home from a nursing shift via public transport. I got off the bus and started on the quarter mile walk to my house and was really having trouble just putting one leg in front of the other This would have been in 1978. The next thing I can recognise was after having my first child in 1987, when after an epidural it took three weeks before I could walk again. I never got full strength back in my legs. About 6 years later I had an episode of Fibrositis in my shoulder and then started to get pain in and around my hip joints and pelvis, which I put down to Nursing injuries (no lifting aids back then!). I found when driving more than about ten miles I became very stiff and it took awhile before I could loosen up, and my walking started to get worse. Then I was diagnosed with IBS, then Constant tiredness, which my doc put down to the fact that I was raising two children on my own, as well as working with disabled adults. In 2006 I had my gallbladder removed, and later the same year I caught shingles. I was using a stick by then as my walking was quite bad. Getting out of bed took ages, as I set like concrete! Things accelerated from there on and I eventually insisted that I thought I had Fibro, at which point my GP took bloods and found Rheumatoid markers in them, so eventually I saw a Rheumy, who diagnosed Fibro and a small amount of Hypermobility.

  • Thank you so much for sharing, fibromyalgia seems to visit us in many disguises before diagnosis. I hope you are currently feeling as well as possible.

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