PLEASE SHARE..how did your illness start?

Discussion in 'Fibromyalgia Main Forum' started by chloeuk, Jan 7, 2007.

  1. chloeuk

    chloeuk New Member

    After reading joebs post about the medication he was given and then being ill straight after I was wondering how everyone else began on this road of cfs/fms..

    I got ill a year ago this week, it started with a sore throat and mild flu like symptoms, and it didnt go away..then came loads of neuro problems and heart problems and fatique, dizziness, nausea..the list is endless as we all know.

    The only thing that I can think of is that I was on a drig the previous year called methotrexate an immune supressant drug which was for severe psoriasis..I met another lady with cfs and fms and she had also taken the methotrexate...

    I would love to hear others stories and you never know maybe we will come up with some that match.
  2. shar6710

    shar6710 New Member

    I never took methotrexate or Levaquan/Cipro.

    My illness did seem to have an infectious onset: severely ill and in the hospital with a unknown virus now believed to be parvo.

    However sometimes I think it all started with a concussion I suffered months before when I literally butted heads with my horse. In pretty quick succession after that I had a horrible sinus infection, a bad cough that lasted for over a month, then a headache for 2 months.

    Shar
  3. foxglove9922

    foxglove9922 New Member

    Seems we all have a little bit of different story but mine was a result of, (I think) stress and a sudden onset. Just woke up one morning, thought I had the flu and life has never been the same since.

    My daughter, however, had mono and just never seemed to recover, actually she got much, much worse.

    We both are disabled as a result of CFS.

    Best wishes,

    Foxglove
  4. Catseye

    Catseye Member

    I was eating SAD (standard American diet), working too hard, doing too much, taking lorcet pluses (just 1/2 twice a day, they hurt my stomach if I take alot) so I could stay on the computer more without my neck throbbing, taking Ambien to force sleep so I get up early and run to the office, basically not taking care of myself and blaming the slow decline on age. Looking back, I thought I was doing enough of the right things, like with food, but now I know I was totally wrong when it came to what was healthy to eat.

    I had gone to the doctor for sinus infections and yearly physicals and whatever, but it was when I applied for health insurance that I found out I had hep c. My doctor had told me I had abnormal liver enzyme levels and asked me if I drank alot. I told him, yes, and he told me to cut down. So I did. He never suggested hep c testing.

    Then later that year I woke up one day normal but later that afternoon, I started to feel really strange and it spooked me. By the next morning I was really scared and asked my husband to take me to the ER. That was my first experience with the "there's nothing wrong with you, it's in your head and we can prove it because your tests are normal" routine.

    So, too many prescription drugs (for a liver battling a virus, anyway), indulging in alcohol, overworking, bad diet and hep c are what "did me in". I'm finally "undoing" it, but it's taken 4 years.

    karen
  5. netnut

    netnut New Member

    I believe mine started with a car wreck.

    I was hit head on in 1997 but this was my third fairly bad car wreck in my life. My first two were in my teens. I never really got over the last wreck and could hardly function except to go to work and come home and collapse. Then my arthritis started to really kick up but no one believed me because it didnt show up on xrays well.

    It took me 4 more years after I started having swelling and painful knee joints for an ortho to do a scope of my knee and discover I had severe arthritis and he apologized profusely for ever thinking I was exaggerating. He said I have some form of clear arthritis that doesnt show up on xrays. By the time you can see it, Im really bad.

    Now I have fibro, arthritis in both knees, spine and hips and chosto.
  6. momof471

    momof471 New Member

    I was injured at work. Fractured manubrial sternal joint in sternum. Not given proper treatment, extreme pain in chest, neck and upper back. Nine months later developed pain in other areas and became bodywide pain. Ayear and a half after injury diagnosed with fibromyalgia along with chronic myofascial pain, costochondritis and so forth.
  7. Mwitherite

    Mwitherite New Member

    after that I had a cyst on my spleen causing a 14 year old to look 9 months pregnant!!! That of course was removed and my spleen along with it. Then started the headaches and back aches. I had to quit all my xtra ciriculars and fell into the depression and anxiety. all this by 16. That's when all the testing and labratting began. i am now 28 and finally got an answer and end to diagnostic testing last week.

    I also have never taken that drug that i am aware of.

    Best Regaurds - M
  8. pw7575

    pw7575 New Member

    My CFS started with a HORRIBLE virus. Doctors say it was either mono or an acute infection of the epstein barr virus which is basically mono because epstein barr is the virus that causes mono.

    Anyhow...mine was definitely a virus and I have been sick ever since.

    Take Care!
    Pam
  9. chloeuk

    chloeuk New Member

    that so many people have responded so far..it is interesting reading..hope more people share.
  10. Clay2

    Clay2 New Member

    Mine started abruptly with a horrible stomach flu at a time I was working too hard and tired. I did take Cipro 3 months before then.

    The stomach stuff grew into lymphocytic colitis, and I developed trigger points in many pelvic muscles that just won't let go. The fatigue has never backed off. It's been almost a year.

    My lungs suddenly had 8 spots and a lot of haze. I failed most liver tests. That has all cleared up on it's own.
  11. krisfromaz

    krisfromaz New Member

    but I "believe" mine started with the birth of my daughter 9 years ago. It was a pretty traumatic experience - starting with preterm labor and ending with me developing pulmonary edema from the meds/steroid combo. She was born at 33 weeks, 9 years later she's as healthy as a horse, but I have not been the same since!
  12. tandy

    tandy New Member



    about 14 yrs ago.

    1..... My dad had just passed away from cancer the yr before onset.

    2..... I was hit/broadsided by an unlicensed teen driver.

    3.... I got a bad case of strep throat that somehow did'nt respond well to antibiotics, so it then turned into a staph infection. (???? still weird to me)

    I've never been 'back to normal' since.

    hope this helps~
    Take care
    Tandy
  13. dolphin67

    dolphin67 New Member

    over a long period of time is what I think started mine. I ignored alot, but then one day my left arm and leg went numb for no apparent reason. then the right a day later. all the tests came back "normal", but my numbness turned to pain and extreme fatigue and the list goes on...
  14. Lendy5

    Lendy5 New Member

    My symptoms started 10 years ago and I was diagnosed five years ago.

    I think mine started after being in a physically and mentally abusive relationship. I was abused for years and have since had to endure a half dozen sinus surgeries.

    Plus all of the stress that came with this.

    Carolin
  15. singlebiker72

    singlebiker72 New Member

    Hello all -

    I'll be 35 in 2 days, hard to believe that. Have had this junk for almost 6 years now. Mine started after getting very, very sick after getting gonhorea from my ex and mono immediately after. I was bedridden for 2 weeks too weak to walk or even stand. The neuro issues then started - major tremors, nausea, dizziness, low grade fever, and ocasional weird fainting episodes where I'd simply collapse. The mental fog was so bad, one day while tired, I got lost while driving to work. I had a sympathetic doctor who battered me with every test he could, which were all normal. A neurologist thought I might have MS, but all major tests were normal, except for extreme weakness in my limbs. After 6 months, he got disgusted and sent me to an infectious disease specialist who reported that I had levels of Cytomegalovirus, Epstein Barr, and another virus whose name I can't remember that were off the charts. A year later, I had a genital herpes outbreak and got very sick again. I wish I'd never met my ex to say the least...
    Anyway, my stamina is next to nil, my strength is about a third of what it used to be, and my memory / mind is also about a third of what I remember as "normal." I've lost several good jobs from fatigue related performance issues and missed work. My life has changed considerably but I keep doing the best I can. Never give up hope that one day you will be well again. It's all that keeps me going.
    I take Cymbalta, which has eliminated the nerve pains in my arms and legs and helps with the resulting depression. I cannot tolerate hardly any physical activity without exhausting myself and cramping up. Stretching helps, and going to the Y and soaking in the hot tub and taking a steam bath keep the stiffness and aches at bay. I'm also male, and it has been so hard to accept all of the life changes. I'm in the prime of my life and feel like I'm spent. Rarely, I'll have a day where I'm energized and can function well. I usually overdo it and wind up paying. Thanks for listening and keep fighting.
  16. Slayadragon

    Slayadragon New Member

    1992-1994: Extremely stressful Ph.D. program; worked solidly 100 hours a week on very intense academic study and teaching. This was continuous except for short school breaks.

    December 1994: Was learning to ice skate. Fell backwards, hit my head hard on ice.

    January-June 1995: Extreme anxiety, inability to concentrate or do any academic work.

    June-July 1995: Two-week trip through Europe (stressful, argued with my sister); trip to NYC with friends

    August 1995: Depression where I lay in bed and did nothing.

    Late August 1995: Prescribed Prozac alone by incompetent doctor. Went into extreme rapid-cycling manic-depression. Alternated between lying down dead, crying hysterically, literally screaming at idiot doctor who insisted I wasn't bipolar, and feeling fine within 24 hours. This went on for about three weeks. Most stressful experience of my life.

    September 1995: Found good psychopharmacologist. Put me on an anticonvulsant drug that stabilized my mood but stressed my system. (Note: I was still very anxious and unable to concentrate enough to do academic work at this time.)

    January 1996: Pregnancy. Immediately stopped drugs. Felt relatively good emotionally for a couple of weeks, though very tired.

    February 1996: Very bad flu (or "flu"). Emotionally okay while I had the flu. Then sank into very deep suicidal depression. Took Prozac to lift mood. (Hormones from pregnancy kept moods from fluctuating.)

    March 1996: Miscarriage. As soon as placenta was expelled, moods started fluctuating wildly again. Again, extremely stressful. Went back on mood stabilizer.

    April 1996: Remained depressed and comatose until I started chipping away at my problems (starting with removing mercury from teeth, DHEA, and food allergy identification; moving on from there).

    Upon reflection......no _wonder_ I got sick!!!!
    [This Message was Edited on 01/08/2007]
  17. kriket

    kriket New Member


    I started to get really tired feeling and then I started to get sore and achy feeling and did not know why.

    I think mine started with having to deal with too much stress and then what finished it off was a bad car accident. I was the passenger in a car and was hit broad side on my side by a suburban. We ended up hitting 2 other cars before our car came to a stop. The car I was in was totaled. Shortly after this accident I went into full blown flaring fibro.

    Kriket
    [This Message was Edited on 01/08/2007]
  18. Slayadragon

    Slayadragon New Member

    Heartbreak....you poor thing!
  19. suzannekart

    suzannekart New Member

    When I was a teen I came down with mono. I was being sexually abused by a man in our town. It had been going on for 4 years. When I had mono he would come over to my house. My mom and dad both would be at work. Instead of being at home for this person to "visit" I went back to school with a raging case of mono. I never felt well after that. It took awhile for the Fibro to become full blown. I really beleive that was what started it. Also when I was a kid in San Francisco our goverment in all its wisdom wanted to test where fallout would go in the Bay Area so the dropped a batch of pneumonia over S.F. I was 6. I was in the hospital for 12 days with this till then unheard of strain.
  20. NEWSEDITOR44

    NEWSEDITOR44 New Member

    For me, a bad virus/flu/gastro illness that lasted for about 6 months (doc thinks it might have been mono, but I was never tested for it at the time.) All other blood work came back neg, including hep, hiv, auto immune diseases, ms, lyme, lupus, etc. That was in 2001. Six years later I have done fairly well. My flares don't last that long, only a week or two at most, though my current flare is getting worst and has been around or several weeks. Nothing has been as bad as the intial onset.

    My onset consisted of::
    Very Bad IBS... explosive!
    Sore throat (first couple of weeks)
    Joint pain
    Muscle pain
    dry eyes - other eye problems including blurred vision, unable to close one eye at times
    unable to get a good nights sleep
    anxiety
    night sweats
    loss of appitite (sp?)
    weight loss (almost 40 lbs.)
    and of course... EXTREME FATIGUE... the kind that makes your body feel weak, your eye lids feel weak, keeps you from walking and talking, thinking, and some times breathing.