when did your fibromyalgia start?

I can remember getting a Flu like virus that lasted for weeks, all my joints seized up but i didn't get a stuffy head, but the head aches were horrendous i can remember crying with the pain, my son (13 at the time) got the same and now still has bouts of the same feeling of it coming back, though he functions ok and does not have Fibro, a neighbour got the same and never got better like myself and that was in 1998.

32 Replies

  • Mine was about 15 years ago got tired easily like someone had turned off my power Dr signed me off work sick not said tired which I ws not happy about as work made fun of it. Started hurting all over not long after that. Had blood test after test, for Pernicious anemia, Lupus, MS Dr even did one to see if I was an alcoholic after about 7 years saw a orthopaedic surgeion for the first time who finally diagnosed me.

  • Hi Jolee :)

    Mine started just over 2 years ago just before i was made redundant from my job, i was woking as an audiovisual engineer, the job involved going through alot of crawl spaces and alot of ladder work, one day my knee gave way on me, i strapped it up and carried on my work, 2 weeks later i was made redundant, i then took a job on a ship as casino technition fixing all of the fruit machines and arcade games as well as the CCTV for tha casino, I was taken ill on board the ship and had to come home, thats when it all started to go down hill, 18 months of blood tests and hospital visits until they finally diagnosed me with Fibro, but they said i would have had the fibro for a long time we worked out it would have started while i was doing the audio visual work, so that would be justover 2 years ago. :)

    CHORLEY :)

  • Hi Jolee,

    I have had fibro since 1998 after being made redundant 6 times, I'd had enough. It has taken a long time for me to a just to a different life still. I used to be so full of life. I went dancing, gym and loved the cinema. I had to give them all up. I work from home 12 hours a week even that's hard. No one has given me any reason why I have fibro, I have given up asking. My Mum is 82 and has more energy than me.


  • can you remember having a flu that year?

  • I had the flu I think it was late 1997. I'm not sure how long it was after that I got told I had Fibro but it was 1998. I never felt right after that flu. I am going to ask my GP if there can be a connection. I have asked so many questions in the past unanswered. I see the GP on the 19th March. I will post his answer.

  • Around 1997 iIhad a full virus which the doctor came to the house, he thought I had meningitis. I was diagnosed with flu which was in my brain. I lost my sense of smell, taste and had to wear dark glasses for weeks. I've always wondered if that's what triggered the Fibro. I had never experienced headaches like it. It would be interesting to see how many other Fibro sufferers had this complaint before their Fibro diagnosis.


  • just read this sorry, so you did have a flu, a bad one too like me, wonder how many more people did. was it late in the year when you got it x

  • No I had the flu in 1997 I was diagnosed with Fibro in 1998.

  • sorry I meant, was it late in 97 that you got the flu, because the flu i got was in January 98, just wondering if it may have been the same virus we had.

  • Hi

    I was diagnosed last year after suffering for 3 years with symptoms. I had mri's, bloods, scans etc. My fibro started after my husband was seriously ill in intensive care for 3 weeks...it was so stressfull. I became incredibally anxious and the panic attacks began and the back pain began. After that i had many virus's and flu (which i hadn't had since i was a teen). I think the stress, anxiety and worry brought mine on. x

  • Hi

    I was in a car accident in 1987 when I was 16, I had a bad whiplash injury and never been the same since. Then when I was 17 I had a bad virus, the Dr was called out and he was concerned I may have meningitis but after a thorough examination he ruled that out, then in Dec 1989 I had a terrible flu with a very bad ear infection, it took me about 8 weeks to recover from it.

    In 1996 I got another bad virus, I had flu symptoms and every part of my body hurt, even my skin, I had the worst sore throat that I'd ever had, the Dr said it was a severe case of tonsilitis and was given antibiotics, I've always suffered with bad aches and pains in my neck, back, arms and legs and fatigue since I was 16 but always put it down to the whiplash injury.

    In 2005 my son was dx with tourettes syndrome, OCD and ADHD, the years leading up to and after his dx was very stressful, thats when my health started to deteriorate, I was finally diagnosed with fibromyalgia in june 2010 after 10 years if being told I was depressed and sent away with anti-depressants and just left to it.

    Looking back now I believe fibro was brought on by the neck injury and the virus I had back in 1989 as since then I've hurt all over and with the stress of coping with my son's mental illness and other family problems.

    I had to give up work in 2006 and now I'm more or less bed ridden, I have more bad days than good :-(

    Irene x

  • Back in 2003 I was told I had Lupus. I then moved to Seattle in 2004 when my family doctor told me she thought that I was misdiagnosed and she felt it was Fibromyalgia. But I would have to find a specialist that "believed" in it. She directed me to a great Rhummy and I felt as if a weight had been lifted. Finding a doctor that understood my pain and stiffness was not in my head was amazing. in 2006 I moved to FL and my issues seemed to fade. I had 5 good years with minimal pain. Now I recently moved to the North Eastern US and I'm finding the cold is causing me much grief and pain again. I'm finding that I'm having flare up after flare up.

  • It funny thinking about this, because in my thirties which is quite a few years ago, I had 2 long bout viruses, which lasted about 6 weeks each. I nearly lost a job after the second one. I remember after this pains which came and went, and one of the pains I experience is in my right foot today, probably won't be there tomorrow. Also when I was under the threat of redundancy my stress levels hit the roof, and I had alternative treatment for my neck and shoulders. I do believe stress is a lot to do with it, wish I was more layback, but you can't change your nature

  • i had an emotional trauma 2yrs ago feb just gone and i noticed that soon after i started to feel ill ,i got diagnosed last march im convinced it was that trauma that caused my FM.

  • i started to get some symptons after i gave birth to my 4th child ,

    the pregnancy was awful cause at about 18 weeks pregnant

    i was told that he had edwards syndrome .

    i had a scan and the results said that he defo had it ,i had to demand an amnio test from doc cause she said there was no point

    .(she said i had to abbort pregnacy cause no point in carrying on cause he will die soon after birth )

    so after a what seemed like a life time i got test results back

    which said he was absolutly fine nothing at all wrong with him,

    he is 7 this year :)

    then when i had my 5th child i was really ill (which i now know is fibro )

    docs kept telling me it was pregnancy and i will be better when i give birth

    then after givving birth still not better was told oh give 3 months ,then give it another 3 months after 12 months i was finally given some tests

    but it wasnt untill 18 months of very bad symptons that by chance i found a leaflet about fibro and took it to my gp and asked him did he think that i might have this so that is how i got diagnosed

    so for me i think it was stress of my pregnancy 7 yrs ago that started it all off there has been lots of other extremly stressful things go on since then which i wont bore you with lol but that was defo the start

  • My specialist says you get FM via 3 ways. A life changing stress incident, a virus or an accident. What youve all said means - in my humble opinion - you all qualify!! xx

  • its seems to be true, reading everyone's answers, something happened to everyone of us on this page.

  • Mine started soon after having an accident - The thing was whilst fighting the case in court the fibro had also set in without me realising the pains were all put down to accident. Won the case but would have been a better compensation if the fibro had been recognise also.. Still thats life. Oh dear I was around 43/45 now 70. Strange now all these years have gone by what percentage is age pain - that is of course if I have any lol.

  • time seems to just fly by, and half the time you feel like you are in a hazy dream too, chin up sweetheart x x x

  • 1998 - motorcycle accident - never recovered. Healed okay, just never recovered if you know what I mean.

    Spirit x x x

  • yes I do know what you mean my love x x

  • 2002 when my Neurorlogist refered me to Reumatology with concern of my memory loss and Fibromyalgia was Diagnosed after seveal tests,and since you can say the "DOORS HAVE OPENED" to everything that comes along with it ,

  • I started getting symptoms when I was 15 after a really stressful time that lasted about 2 years...well longer but the majority was in that time...I got really achey, tired, stress incontinance, depression...random pain, insomnia...but at the time is was all put down to depression after what I'd gone through....I went back and forwards to drs but no one took it seriously.

    After my 1st child symptoms got worse...put down to serious post natal depression, then it's just gradually got worse since then, 2 years ago I had a major flare up and drs started listening.

  • i think that Doctors are only just starting to listen like teachers when it comes to dyslexia

  • I agree. I'm lucky, my GP is good....although he's not providing all the latest meds used for FM but I'm in agreement with him that if I can cope from each fortnight that I see him and learn to live with the pain...when I do really need them...they'll work. That's the theory anyway

  • i was diagnosed 18 months ago. Strangely enough i was in a car accident nearly 2 years ago. makes u wonder doesnt it

  • Back in early 1997, before we had access to the internet, I had a run of 3 months' bad luck, starting with a groin strain leaving me with a pigeon's egg sized bloodclot, and then being knocked off my feet with a really lousy virus producing a glorious strawberry rash on my face and torso, aching bones all over and complete loss of voice for about 10 days.

    While still trying to shake off the bug, I woke one morning both freezing and burning up, unable to move out of bed. I felt like my frozen joints would shatter if tested by activity. My skin looked and felt like I'd got sunburn. That was the onset of RA initially, originally thought to be viral RA. That was March 1997.

    When the symptoms didn't go after 6 months of weekly, then monthly, blood tests, I was put on a second line of meds to try and stabilise things. It took 10 years of drug experimentation for the rheumatologist to confirm that my main symptoms were actually more FM than RA, and he would refer me to a pain clinic.

    When I looked FM up, everything fell into place and I knew I wasn't going mad and also wasn't a hypochondriac! That spark of knowledge eased my bewilderment. The pain management team were able to then assist with my needs, tell me how the meds worked, tell me about my body's pain switch always being "on" with FM (the pain gateway theory), and give me some direction on how to manage daily challenges. After that, I've tried to pace things, but the stress and physical demands of my full time job finally defeated me 15 months ago, leaving me to justify my existence and jump thru ESA hoops in return for the Govt shilling!

  • I know how you are feeling really i do, from being a fast hardworking mum of 3 juggling schools job and house, to well nothing really. like a full stop. the time has gone passed so fast, its hard to believe you have been poorly so long and still we think surely tomorrow things will be better. lets hope they are x x x

  • i had s nervous breakdown at sixteen after suffering years of sexual abuse from my step father ,, after that i was never quite right unexplained pains and tiredness ,, but since i took him to court for the abuse 12 years ago it seemed to go into full blown fibro and other health things xx

  • from the heart i am so sorry my love what you have had to go through x x x

  • thank you ,,, xxxx

  • I have had Fibro for a pretty long time. I do remember having like a very bad flu when my youngest was maybe 8 years old. She is now 16 in July. It was so bad I could even get out of bed for days, super high fevers. Headaches . Chills, body pain so so unreal I thought I was gonna die. It took 2 week to start to feel better . The body pain never totally went away. I took her to Disney with my older children, and had like a flair up. My legs and feet were so effected. I remember walking was so painful.

    I would have bouts of feeling ok, and then the pain would

    return. Now I just have pain every day. I do have a little more energy though. I do take vita D, and a lot of juicing veggies. I am always work in progress.


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