Symptoms decades before true onset?

Discussion in 'Fibromyalgia Main Forum' started by ForeverFlaring, Apr 30, 2003.

  1. ForeverFlaring

    ForeverFlaring New Member

    Hi all...I thought I might pose a question to you all and see what you think.

    I remember as a teen there were quite a few times when I felt this inappropriate urge to sleep because I would be suddenly overcome with exhaustion.

    I remember being about 17 and I was sitting at a MCDonalds drive thru when this huge wave of fatigue hit me. As soon as I got my food, I parked the car and closed my eyes for what was going to be just a minute. Two hours later a friend of my sister's tapped on the car window and asked if I was ok. She said she had parked beside me an hour earlier and saw I was sleeping so she didnt bother me. She left but couldnt shake the feeling something was wrong and came back an hour after to see if I was ok.

    This happened a handful of times. I remembered thinking how odd that was to happen as I was so full of energy that day and I slept well the night before. I still have never figured it out but looking back on things I wonder if this is something I always had and it remained latent in my system until I got chickenpox at 29 years old.

    As a kid I had horrible growing pains. I would scream with them because they were so intense. My mother never took me to a doctor because they were "growing pains" but I will never forget how awful they were. As a young teen thru adolescence and into adulthood I had these sores in my mouth. They were white and blistered but never very painful unless I bit on one.

    There are so many things that I can look back to my childhood and think...maybe these were symptoms. I was very healthy otherwise. I never missed a day of school until I was in 3rd grade. Throughout my entire elementary and middle school years I would say I missed 10 days total due to illness. I never had mono, even though my EBV shows I have. I had strep a few times but only as a young adult. My mother remembers that I was hospitalized as a baby for something but she cant remember what it was.

    My point is...could the CFS and Fibro gene or virus be within everyone? Perhaps there was a minor infection decades before we got ill, and our immune system suppressed this virus, but never fought it? There have been studies that show that most of us were very hard workers, type A personalities that were driven. We put in long hours and never let a flu or cold keep us from work. There have also been estimates as high as 85% of us have been sexually abused at one time in our lives.

    I am sure that if one of us was a mathematician and did a poll that we would all have something in common. I am rambling on and on here.

    Did anyone else exhibit symptoms early in life that you now think are linked to your DD?
  2. judywhit

    judywhit New Member

    my symptons started at a very young age. I do remember having roseola and many events with strep throat. I am being treated with an antiviral. We are thinking that I have been a host to a virus for many years. If this is true than I should see symptoms subside while taking the med??
  3. Bellesmom

    Bellesmom New Member

    I could just go on and on about the things that come to mind. I've gone over and over to see what the common link might be but it's so complex and children are so disbelieved. Mainly I think it's because if you take them to the doctor the doctor initiates the "growing pains" theory and since they can't find anything definite in most kids they just pass it off and so do the parents. It's much easier.

    I know one of my granddaughters has many problems physically but no one will do anything about it starting with her parents. Neither will consult a doctor but, guess what, even if they did chances are that much-educated person would probably keep the old theory going - "it's just growing pains and they'll grow out of it."

    I'm with you - we can just ramble on and on with all the evidence we have and it just doesn't mean much to the medical profession, only to each other here on the board.

    Thanks for this subject

    Pam
  4. bakron

    bakron New Member

    I’ve also had symptoms for many, many years prior to diagnosis. I did have the same severe leg and arm pains that my mother contributed to "growing pains." I thought it strange that my cousins never had the same severe pain. I remember lying and crying because the pain was so bad.

    Then, in my early 20’s, I had a “staph” infection that went into my lymph system. This made me really ill for a long period of time. I believe that my heart murmur is due to that infection. Not too long after that infection, I began to have aches and pains all over with swelling in joints. At 27, this was alarming to my whole family. I was hurting to the point of having to have my husband turn me over at night as the pain would be too bad for me to move on my own. Many tests were run, and nothing was found. When my left knee swelled up, the doctor that I was going to took fluid from the synovial joint and found “viral particles” in the fluid. At that time, it was impossible to identify the particular virus. The problem ran it’s course, and I became better. However, my left knee does “pop” quite a bit, and I have had TMJ in my left jaw since the “unknown” virus infection. Then, not long after these episodes, I came down with mono.

    Many theories about what causes FMS revolve around various infections. I truly believe that my FMS is due to one of the three illnesses that I’ve described above, or possibly two or all three. Since I’ve had the illnesses, I’ve never really recovered from having extreme fatigue. As I’ve gotten older, the symptoms have increased until I was diagnosed about one year ago.
  5. Mikie

    Mikie Moderator

    But if I look back, I can trace some symptoms to my childhood.

    Love, Mikie
  6. JLH

    JLH New Member

    growing pains as a child (grade school age). I remember lying on our couch crying with severe leg pain in both legs. My mother took me to many doctors. One said he thought that I had MS (and I didn't) but the rest said I just had growing pains and that I would outgrow them.

    I was always fatigued easily. In my 20s I started having severe migraines that lasted until my 40s when I started taking many blood pressure meds.

    I always got sick as a child when I was out in the sun and/or got overheated (early symptoms of my lupus???).

    So .... I think the fibro and lupus has been in my system since childhood, too.
  7. JLH

    JLH New Member

    growing pains as a child (grade school age). I remember lying on our couch crying with severe leg pain in both legs. My mother took me to many doctors. One said he thought that I had MS (and I didn't) but the rest said I just had growing pains and that I would outgrow them.

    I was always fatigued easily. In my 20s I started having severe migraines that lasted until my 40s when I started taking many blood pressure meds.

    I always got sick as a child when I was out in the sun and/or got overheated (early symptoms of my lupus???).

    So .... I think the fibro and lupus has been in my system since childhood, too.
  8. kar1953

    kar1953 New Member

    I have only been dx'd for about 2 1/2 months w/fms - but - looking back & knowing what I know now, I'd say I've had symptoms since high school. Back aches all the time, to the point of hospitalization many times simply because the ortho didn't know what was wrong, same with neck & leg pain, mono(someone told me you can only get a bad case of mono once, but I'm here to tell you that is not true), tonsilitis, bronchitus & had strep many times. It seems like there was always something hurting somewhere on my body & still goes on today.

    I just experienced "true onset" on Nov. 13, 2002 & dx'd Feb. 18, 2003. Funny, how I can't remember so many things but I think these 2 dates will stick in my mind forever.

    Take care........Kathi
  9. klutzo

    klutzo New Member

    ..that something was wrong with my nervous system, because I was SO much more sensitive than other people. Then, at puberty, the concomittant symptoms of FMS started hitting, with a new one added about every other year. I missed so many days of school because I could not get up in the morning, that I would have flunked out of high school if the present day rules had been in place then. In college, I made sure I never took a class before 11 am. The main symptoms did not hit until I almost died in a car accident and then had the flu at age 35.
    Dr. St. Amand, who came up with the Guaifenesin protocol for Fibro, believes it is a genetic defect in which we do not eliminate phosphates properly, which are stored in our cells and prevent proper ATP formation. ATP is the energy that your body runs on (Adenosine Tryphosphate). This deficiency builds and builds and builds from birth until some event uses so much energy that we run out of ATP. Then we flare and remit, because as soon as we build up some ATP reserve, life intervenes and we use up our energy again, causing a flare. He thinks the age at which you develop the full-blown problem depends on how many faulty genes you inherit.
    Even if you are not willing to try the Guaifenesin, it is worth reading his book, because this theory is so interesting, and so different from most of the theories out there.
    One of the reasons I was willing to try it, is because I have always thought I must have had this from birth.
    Klutzo
  10. momkatmax

    momkatmax New Member

    Same kind of thing, sometimes would happen when driving! My Mother had multiple health problems later in life, but was plagued by "fatigue" too.
  11. momkatmax

    momkatmax New Member

    Looked further into replies, in teen years had bad leg cramps that my Mom or Dad had to massage my calves to help.
  12. tansy

    tansy New Member

    Interesting how many have come up with that. I participated in a lot of sports but still had awful growing pains and muscle cramps - more than should have occurred.

    My brother, sister, and I were all small as children but each of us went into a rapid growing spurt at 13 (females) and 14 (male). This was when the growing pains set in.

    My son became ill at 14, Epstein Barr and another virus - not true CFS but had immunological symptoms ++++. He too had severe growing pains. Holistic doctor I took him to said he saw problems like this all the time. How a spurt in growth made some young people venerable to illness. He thought the body's demand for minerals including zinc and magnesium(!) helped contribute to this.

    In days gone by this was recognised, young girls would even have their long hair cut because it was thought it was draining their energy.

    Other than a few nasty bugs and allergic reactions I was actually pretty healthy and very fit - loads of stamina.
    I even survived a pulmonary embolism (contraceptive pill) even though given only a 1 in 4 chance of survival. After a year, though I never got back to previous stamina levels, I was fitter than the majority of my peers.

    Cheers

    Tansy
  13. skychomper

    skychomper Member


    I never knew there was a connection with growing pains and cfs/fm-ers until I came to this board. I've had growing pains since I was a kid. I would have to crawl to the hall closet, bawling my eyes out and get the heating pad. they started going away as I got older, but it was only after I went to the chiropracter that I was "cured" of growing pains. I've always had a pelvic/hip problem too. they need adjusting by the chiro from time to time. Im going to see an osteopath, to see if I wouldn't benefit from adjustment/manipulation.

    p.s. I was also suffered clinical depression in highschool and my exboyfriend who is on antidepressants also suffered "growing pains" does anybody know what the heck they are?

    peace and no pain,
    skychomper
  14. MemoryLane

    MemoryLane Member

    of this odd variety of seemingly unrelated symptoms, but yes I have symptoms going back early in life. I believe though that the onset itself was then and not now, and it has been growing insidiously all these 40+ years.

    I hated hearing that word - "Growing Pains". I have had a sleep disorder since before the age of seven, Migraines and fatigue since High school, depression earlier than that - on and on.

    I had many recurring bouts of some mystery virus that would last many days past the usual flu and leave my mouth and nose a landscape in full bloom of fever blisters.

    I think the full presentation came almost five years ago, when I had to have a hysterectomy for internal Endo (Adenomyoma), then it was like a snowball effect in fast forward.

    Lane
  15. Sunshyne1027

    Sunshyne1027 New Member

    I had symptoms at a early age, the prominent ones being fatigue, restless leg syndrome, and the pain with growing pains, constant headaches also.


    I sometimes think about maybe its from emotional child abuse, hiding feelings, stuffing them, being the one to carry the load for everyone. Under alot of stress constantly for a very long time. Just recently thought about it. I am type A personality too, and have become a perfectionist.