What do YOU think caused your illness?

Discussion in 'Fibromyalgia Main Forum' started by isiselixir, Jun 3, 2009.

  1. isiselixir

    isiselixir New Member

    This disease is so mysterious and different for each individual. I have no idea what caused my illness and it makes even less sense that I went into spontaneous remission for a while last year because I didn't change anything, wasn't on a special protocol, etc. For those of you who know what caused your illness, please share, and for those who do not know please share if you have a hypothesis. Also if anyone has gone into remission or had cycles I'm curious to know about that too. People are always talking about wanting to find a cure but how is that possible without knowing a cause...
  2. frickly

    frickly New Member

    I went through cycles for seven years. My worst was a six month period where I had to crawl up my stairs (I was only 30 years old). It was about 1 1/2 years ago that I stopped having remissions and just felt like crap all the time. To simplify it I think you could compare our bodies to that old car most of us had in high school. Some times it would start and sometimes it wouldn't. Everytime you take it into the shop it runs like a champ and they just can't find anything wrong with it. But eventually, it stops running altogether. I think CFS is a symptom of either a mitochondrial disorder or immune dysfunction. If we don't fix the problem then eventually our bodies run out of the energy it needs to fight off all the bacteria, parasites, toxins, heavy metals, ect, that we are exposed to everyday. I was lucky that I found a good doctor that did the right tests and found I had a severe mycoplamal infection along with depleted glutithione. I am now on long term antibiotics and glutithione/ATP injections. It is helping me but I still don't beleive this will solve my problem. I think there is another reason why my body is so suseptable to bacterias and that my immune system is working overtime to protect itself and therefore depleting my glutithione.
  3. greatgran

    greatgran Member

    What happened to my body. I have no idea what caused this dd and have found nothing to help. In fact I am not sure of my Dx as I doubt it all the time. How can one feel this way and no known cause or cure. I am different each day, I always have aches and fatigue but there are days I can't even make it out of bed. Example this morning when I got up I thought ok this is going to be bareable . I actually caught up on some emails, wrote a letter, read some, gave my granddaughter a ride and by noon I was so exhausted, weird head feeling, achy its like I feel so bad I am dying I just can't describe how horrible I feel. I have stumbled out of bed and thought I would come here and see if anyone feels this bad. When I saw your post thought I would share my misery. In answer to your question I don't have a clue what happened to me and the past year or so I am slowly getting worse. All I know to do is accept it and be thankful for the far and few good days.

    God Bless,
  4. vivian53

    vivian53 Member

    I am saying this at the risk of sounding ignorant but..............I think I caught it and this is why:

    I ran a small mental health clinic, 15 employees, and a new psychiatrist came to work who was very sick. This was in 1993. She said she had Chronic Fatigue and had it for approximately 2 years. She described her symptoms, they are what we all have.

    She told me her husband had had the same thing, he was also a physician and had worked in Houston at NASA. She told me he had been cured after having been sick for 10 years. She worked there about 8 months and then had to quit. I never heard about her again.

    About six months later one of my workers was diagnosed as having FM. She tried to work but was too sick so after a year she had to quit.

    Approximately 4 or 5 months later I started aching all over and went to my family doc who told me it was old age, I was 41, you know the drill. I worked for about 2 years more and then quit also.

    So that is my story and my theory. Unfortunately I am wrong because no one else thinks this.
    Oh well.........

  5. hdparadis

    hdparadis New Member

    I had FM all my life and it got worse as I got older and the injuries from my younger days didn't help matters. I have never been limber and was always having odd illnesses and aches most kids don't get. I think that the main trigger that pushed me into full blown FM was a car wreck I was in when I was 18. Going 75 down the highway, lady in an SUV doesn't see us and starts across the road, we T-boned her. For us it was head-on and I wasn't wearing a seatbelt. I went from the first back row of seats (we were in a 10 passenger van), dislocated my shoulder on the passenger seat, and slammed head first into the dash. I walked away with a dislocated shoulder, concusion, lots of bruising and, unknown to us, a neck injury that would over time cause permenant nerve damage and require major surgery to fix the vertebrae. What's odd is I didn't get really sick until about 3 years later. I guess maybe it just took time to develop completly.

  6. TeaBisqit

    TeaBisqit Member

    There are so many reasons why I'm sick today. I was bit by ticks when I was a child, so right there, Lyme. However, I wasn't sick like this. When I was about fifteen, I went to a diner with my mother and a friend of hers. All three of us got deathly ill and none of us recovered. To this day, I don't know if it was an industrial poison in the food, a viral entity, I don't know. All I know is, that was the main immune hit right there. I got fibro symptoms from that, I got the NMH from that. It all started right there. But after that, I had a quasi semi remission. I was only half functional. I could have half a life. Go to school part time, everything had to be part time or I got sick. When I was in college, they forced me to get a polio shot. The school claimed that I was missing one on my records, which was not true, but I couldn't prove it. They said if I didn't do the shot, I would not be allowed back in college and not just their school, but any school. I did the shot against my will. And that entire year, my health declined badly. And then that winter I caught the main CFIDS/ME thing that fully disabled me. Like I said, there's alot of factors in why I'm sick today.
  7. Doober

    Doober New Member

    Of many different ilnesses and infections over a long time.

    I am deaf in one ear and wear a hearing aid in the other. So from the time I was about 4 to early 20's I would have ear infection after ear infection.

    When I was 7 1/2, I stepped on a rusty nail and never told anyone. Well, after several days it got severly infected and could not wolk on the bad leg. Spent 2 1/2 weeks in the hospital because of this.

    When I was about 12, had gotten stabbed in the side of the leg with one of thos pointed saw blades.

    From the time I was a teenager up to about 10 years ago, whenever I got sick, I sort of believed that old adage of "sweating out the fever". I mean I would lay in bed with blankets and sweatpants and sweat shirt and just I guess willed myself better. Unless when I was sick came with a bad cough.

    It wasn't until my late 20's when I started going to DR's for what ended up being sinus infections or Bronchitis.

    The last major thing I did was have my ACL replaced and to tell you the truth, I think I had a slight cough at the time of the surgery and no one picked this up before they put me under. And I certainly didn't say anything because I didn;t want to reschedule and go through redoing my vacation and sick time around this (Which didn't matter anyways because I ended up working from home beginning the monday after the surgery which was on a Friday),

    About a year later I had an episode of something that put me in the ER and a few nights stay in the hospital. This was the beginning of my journey to taday and beyond.

    So, I wanna say that my body has had so many infections and other things that my body is now just fighting itself inside for apparently no reason. I have not had a cold or been sick with any type of flu or anything else like that. All this despite only having gotten the flu shot ONCE in my life. And all the bloods tests and other tests are not telling us the full story of why either(which I am sure evetyone knows a thing or 2 about this...lol).

    There are endless possibilities we can think of. The root cause for most of us may be so different from eact other, but the end results so alike.
  8. frickly

    frickly New Member

    "I am saying this at the risk of sounding ignorant but..............I think I caught it and this is why:"

    Vivian, You are not ignorant and there are many people that beleive the same thing. In fact, there have been many studies done on this theory. If you want to learn more you can google gulf war illness and chronic fatigue syndrome. Also, Mycoplasmal infection/gulf war illness/chronic fatigue syndrome. Many gulf war veterans have claimed to have passed it on to their families and studies have proven that this is true and is due to a bacteria.
  9. rachel76

    rachel76 New Member

    Vivian, you're not ignorant.
    I was told that others who belonged in the CFIDS Foundation that they suspected they caught this from others.
    Then there was the Lake Tahoe epidemic.

    Anyway I suspect I got this because I had bad allergies rhinitis all my life. My Mum thinks it's because she ate a lot of fish when she was pregnant with me in England. Fish at that time in England came from polluted local sea and though it is OK for ordenry people to eat, my Mum thinks that it might have been harmful for her to eat a lot while pregnant. But never mind. Basically I had a lot of allergies and I caught colds a lot. I never suffered any pain or severe exhaustion.

    At age 15 I kissed a boy I didn't even know the name of at a drunken party away from my parents. It was the first and only time I went to a party like that and the first time I kissed a boy. I got swollen glands and exhaustion 6 weeks later (the exact incubation period for epstein barr) and was diagnosed with Mononucleosis with EBV blood test positive. I never recovered. I never rested from it properly either...and that worsened things.
  10. jess

    jess New Member

    There could be several for me. I think I may have been born with this. I was sick alot and then got mono at 7. I recovered from mono but started having worse problems around 15. Sometimes I believe it is some kind of vascular disorder. My Dr. who has done every type of Lyme and co's available says he thinks an infection caused vascular problems. Basically I am not getting enough circulation to my organs. Yet, my worst symptoms are GI. I have definitely gotten worse over the years with few remissions. When I am sick boy am I sick. I have been to the ER twice in 2 months. Most of the time I feel lousy which turns into awful sometimes. There have been small gains. Being gluten free has made some difference but GI problems abound still. Yes, when I am really sick I feel like I am dying. LIke everyone, I hope they find some answers for some relief. I would like to have some of my life back for whatever I may have left. Jess
  11. meedmo42

    meedmo42 New Member

    I have had Fibro for many years but only in the last 10 years was I diagnosed (a great relief that it wasn't really 'in my head'). I do believe that it runs in families as my older daughter now shows symptoms like I had at her age. I read somewhere that like arthritis, any injury to a part of the body, can recur later with pain and soreness. When I was in junior high school, a boy pulled a chair out from under me, causing me to sit down hard on a concrete floor. Many years later, in my 30's, my problems started with my tailbone and then spread to the lower back, where most of my problem is now......although I have pain off and on throughout my body. The weather seems to affect it as I live in Northern IN and when it is chilly and damp, there is much more soreness and tightness in the muscles. But stress in life (worry over bills, work, relationships) seems to also make things tense up and cause pain. I never know when it is coming, so have problems planning my life. I have had many times of planning events and then having to call off because the muscle spasms have attacked and I need to lay down.
    I sleep on a couch since my bed causes wide spread pain and aches upon rising in the morning and I do not have finances to replace it with one of the well-advertised good ones.
    I take muscle relaxant regularly and a pain reliever when needed, to keep the pain to a manageable level. I exercise some on days when I am feeling able........when the pain is at a dull ache or goes away for a bit. Mostly I walk or bike. Sitting for long periods is difficult, but walking or stretching out on the couch helps a lot.
    As far as I have read, Fibro is a chronic disease without a cure and probably, like regular arthritis and rheumatoid arthritis, never will. We just have to learn to live with it the best we can......each person treating their symptoms the best they can for themselves. Different things work for different people. You just have to experiment till you find your best way to live.
    At least we now have a diagnosis and are not thought to be 'mental', which is what we fought for many years. One of the greatest things is to know that even though there is no cure, it is recognizable and we can work to relieve symptoms.
    My best to you, isiselixir. It's a life one must adjust to, along with our families.
    Mary E.
  12. sweetbeatlvr

    sweetbeatlvr New Member

    to FM and CFS. I belive that someday they will find some kind of genetic component to it.

    since a young child, i would have odd symptoms pop up: once they thought i had an ulcer at the age of 8, then as a teen i would get awful flare-ups of joint pains (that traveled), a couple times a year, weird rashes on the palms of hands and bottoms of my feet, all of which, no doctor could explain.

    i was diagnosed with Endometriosis at the age of 17, which led to a total hysterectomy at 33.

    after the surgery, i started hemmoraging, and had to be put back under again really fast.

    i believe that shocked my central nervous sytem, and kicked the FM into high gear, all those odd symptoms since childhood came back on a very consistant basis.

    my mom had an accident at work one year, where a large woman fell on back, and she developed the same symptoms that never went away

    i really wish they could figure it out.
  13. Aberlaine

    Aberlaine Member

    Like Jammin, I think I've been susceptible to it all my life. I lost my mom to leukemia when I was three years old. I think that's when my fatigue started. I could never keep up with my family when we went on vacation.

    I had a hysterectomy in 1995 and a total knee replacement in 1999. Together, they caused the fibro to become active. Pain, fog, etc. I got remarried in 1995 and kept on working full time (with a 30-mile commute). Husband didn't understand or sympathize with my lack of energy. I didn't have a diagnosis when he died of lung cancer in 2000, so he never knew what was going on with me.

    I grieved for him over three years while trying to continue to work with a new supervisor who just caused all her employees major stress. When I retired at the end of 2002, I could barely do anything. After six years of retirement and trying to hold stress at an arm's length, I'm doing better but have never gained my energy, etc. back. According to an energy envelope I have, I'm functioning at about 35% of what I used to do. But that's okay most times because my life has become so simple.
  14. Empower

    Empower New Member

    Years of unrelenting stress
  15. hermitlady

    hermitlady Member

    I am positive the FM/CFS began due to being under a huge amt of stress about 14 yrs ago. This was the beginning of a long, rough road dealing w my daughter and son's developmental, mental and behavioral disorders. It continues to be the main source of stress in my life from morning til night. I am constantly dealing with their aggressive, out of control behaviors that often times become physical towards me. Not good.

    Depression has visited me off and on since childhood. This is a hereditary illness from my father's side of the family, there is history of depression, anxiety and bipolar from my dad and his siblings. I feel fortunate tho to have so many treatment and med options available to me that weren't around for my aunts and uncles when they were sick. One uncle just about got completely ruined from excessive experimental ECT in the 50's, very sad.
  16. Forebearance

    Forebearance Member

    Wow, Vivian, your story is really interesting.

    At the Incline Village outbreak, there really seemed to be some infectious agent that was causing people to get sick. There was also some evidence that the people who got sick were exposed to toxic mold. So maybe it was a combination of things.

    isiselixir, I found out one big piece of the puzzle of my illness when I read a book called "Mold Warriors". I did a genetic test and found out that I have a genetic susceptibility to the toxins made by some species of mold. And getting away from the place with toxic mold in it has helped me feel a lot better. So I think that mold poisoning is a big part of my CFS.

    But I think there could be more than one factor that caused my CFS. I appeared to have mono or a reactivation of mono at the beginning. It's possible that I have a small smoldering Lyme infection. My methylation cycle seems to be messed up. It's really hard to separate out causes from effects of the illness.

  17. Nanie46

    Nanie46 Moderator


    Infections have caused my illness. I recently found out that I have a chronic borrelia burgdorferi infection and Bartonella.
  18. rockgor

    rockgor Well-Known Member

    scientists can't figure it out, neither can I.

    Far as I'm concerned, it's just BAD LUCK!

  19. vivian53

    vivian53 Member

    Thanks for your posts. You are right. I did some simple research on Mycoplasma Fermans and found it. I never really had done this, as I have said before, I was just thankful to move out of the 'it's all in your head' realm into the 'I finally have a real diagnosis' realm.

    Now I am in the 'FM is just a symptom' camp and moving forward from here. I am not sure where I am going, but forward is the direction.

  20. isiselixir

    isiselixir New Member

    and thanks for all your responses!

    2 = mycoplamsa and other potential causes
    8 = stress, emotional trauma, injury, or surgery
    1 = toxic mold
    4 = infections and/or tick bite, also one added food poisoning
    1 = initial mono/EBV
    3 = unknown

    *also it is interesting to observe that many of you believe in a genetic theory or predisposition to CFS or FM