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Can You Come for a Visit? My ME/CFS Says No
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Can you trace your illness back to about 1980?

Discussion in 'General ME/CFS News' started by Stormyskye, Jan 13, 2010.

  1. helsbells

    helsbells Senior Member

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    i don't really know if a tetanus shot is really the same thing but i had one when I was already ill and im sure they gave me something else at the time (I remember them giving me something out of the fridge directly on my tongue). the thing is I was already ill and had the vaccs because I was at the Docs with a friend cos I had too much time on my hands because I was ill D'oh hey but aint hindsight a wonderful things. Like messing around with photography chemicals for three years at college with MCS Double D'oh
  2. helsbells

    helsbells Senior Member

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    I see then quite a lot of us have had it for a long time, its nice to know Im not the only one although that makes me sad for us all too :(
  3. Cloud

    Cloud Guest

    My ME/CFS onset was autumn 1993 immediately following Hep B Vaccine. I had no acute infections immediately prior to this. Before onset, I had always been very healthy....cross country runner, academia, work, family, on top of the world for decades. My illness has been progressive over the years since 1993 without any remissions at all. I have only began to improve this last few years with the help of Dr Peterson and a good GP.
    So, no I don't go back to 1980.....thank God! 17 years has been more than enough.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    My CFS also started with Epstein Barr (Mono) in may of 2003. I had been feeling ill for a while and the Dr sent me to the hospital because they thought I had a blood infection. Turned out to be "only" Mono and was sent home! No overnight stay for me, even though I was really sick and tired and the drive home was about 1 hour.
  5. sunlady

    sunlady Guest

    My ME began with a very nasty bout of flu in December1974. I had been fit and healthy until that time.
    I have been ill, CCC, for more than 35 years. After 13 .5 years I went into remission for 8.5 years. This was when I stopped work and rested as much as possible and went on a very strict anti candida diet, The Stone Age Diet. Once the candida had been eradicated I began introducing different foods into my diet and using supplements.
    When the ME returned I found some help from Armour Thyroid and Hydrocortisone. I currently take T3 and T4 (Thyroid Meds), Hydrocortisone, Vitamin D3 injections and supplements (for inflammation) Antibiotics for H.Pylori, Magnesium injections (muscle pain), B12 Hydroxycobalamin (brain fog), CoQ10 and Flax seed oil (energy), probiotics, iron and food form supplements.
    My sister also has ME.
    Both my sons have Autism and the eldest also has ME.
    My mother died of Chronic Myeloid Leukaemia and her sister also has this disease.

    There has to be a way, we just have to find it.
  6. Eressea

    Eressea

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    I've been reading a lot on this forum, but never posted anything... but I think that my case might be interesting :) I'm from a ME/CFS family:

    my greatgrandmom became ill in her teens (1930's), we don't know more than that she always has been sickly. There is not much known about my great-great grandmom, but it's believed she wasn't healthy as well.
    my grandmom had to take care of her, but suddenly at the age of 17-18 (1956-'57), she became ill, too. None of her brothers and sisters (10 boys, 1 girl) have become ill in their lives. Now she sufferes from epilepsy and hundred other things, though we never told her she has ME/CFS for several reasons, but it is very clear that she has it.
    my mom became ill at 20 (1980) , after a virus, and she suffers from mild ME and severe FM.
    I became ill at ten years old (1996), after pneumonia, and at the same time my aunt (no relative) and best friend became ill too in the same month. We still all have it, and it clearly is ME.

    So, with me, it's been going on for generations now... Though it's weird that most of our family (90 of them, counted from my greatgrandmom) didn't become ill.
  7. jace

    jace Off the fence

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    Welcome to the forum, Eressea, and thank you for sharing your family's history of ME/cfs.

    There are quite a few Dutch people active on the forum. I hope you soon feel right at home here.

    jace x
  8. Eressea

    Eressea

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    Thanks :) Yes, I do already feel at home here, I really like the chat :D
  9. L'engle

    L'engle moderate ME

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    I was supposed to get the Hep B vaccine in Grade 9(1994) but I didn't. Glad I didn't now, it could have triggered my CFS 5 years earlier than when I got it (1999). Everyone thought I was being unwise at the time... perhaps I was not.

    I hope you will continue to improve!
  10. Cloud

    Cloud Guest

    I think your right L'engle.....there is lots of data out there showing the Hep B vaccine as one of the most reported as triggering onset of ME/CFS
  11. toddm1960

    toddm1960 Senior Member

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    Rochester, New York
    1987 it hit me, never diagnosed until 2009 and that was a POTS diagnosis. I live about 70 minutes easy of Lyndonville, NY sure wish I had heard of Dr. Bell back then.
  12. BEG

    BEG Senior Member

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    1987 I was diagnosed with Fibro. I never missed a beat until a dozen years later when I was slammed with CFS.

    Toddm, your signature line is very interesting. A lot of your distress seems to be in the digestive system?


    BEG
  13. toddm1960

    toddm1960 Senior Member

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    Rochester, New York
    GI troubles are a big part of everything, and were the first positive diagnoses I got (after 25 years it was nice to have someone find something wrong.....lol) The dysautonomia and mitochondrial dysfunction were diagnosed in 2009.

    I think we're going to find CFS, fibro, dysautonomia and mitochondial problems all linked with XMRV.
  14. Rsmy59

    Rsmy59

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    Became ill in September 1983 with flu-like symptoms (body aches, sore throat, fever) which went on for 6 weeks, then continued with added symptoms for the next year and a half. I was diagnosed in 1985.
  15. Nickcnate

    Nickcnate

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    I had a severe case of mono 1984- missed an antire year of high school, followed by CFIDS diagnosis. NEVER BEEN THE SAME SINCE!
  16. sewnsew

    sewnsew

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    A virus from hell in 1982, when I returned to the workforce during the very early hormones-waning phase of my life, began a struggle that finally felled me in 1990. BUT in my mid 20s an unsuspected sensitivity to a decongestant prescribed for "chronic sinusitis" in 1971 threw me into what I now realize was a depression, forcing me to stop working the first time.

    My father had bouts of it all his adult life and lost the battle in 1995 after the last of many which came closer together and lasted longer as he aged.
  17. Marg

    Marg Senior Member

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    Yes, I can but I did not know it. I had started not sleeping having leg pains and some panic attacks. This was new to me and had some ER visits. I thought not too much about and it would wax and wane. In 1986 a friend told me she thought I had FM. I saw a rheumatologist and he found all the required tender points. He started me on Elavil. I could only take 1/4 but I was sleeping and thought I was fine and went merrily about my business. Fast forward to 1993, the most stressful year of my life, too long to go into all that happened. I had the flu shot the last of November and in two weeks I had the worst flu of my life, it was the last straw. I will never have another. I do not know how I got through Christmas . It would not go away...back to the rheumatologist....he now told me I now had CFS. I said that I thought I had FM, he told me it was one and the same. He told to see a shrink to learn to deal with my illness because I would not ever get better. I knew he was not noted fro his bed side manner but that was terrible. Well, I went to the car and cried and cried, don't know how I got home. I never went back to him and my long journey started..doctors in 5 states and slowly better after a lot of work on my part and 8 year remisssion. I knew it was coming back in 2008, the pamic attacks started but I ignored them and kept going and faking. Late in February of 2009 I knew I was not getting out of bed, it was all back.
  18. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    "you dont have enough of the good stuff in your blood" is what they told me when i was fighting a rare bone infection from oct 79 - april 1980 Since then I have had numerous blood, skin, lung, and mouth etc infections and lots of antibiotics. A few years ago I had the Twinx vacination and since that time haven"t had any "infections" but got much sicker. (no antibiotics as no infections) I started taking minocyclin a few months ago and have found much improvement, this leads me to believe that the antibiotics over the years kept this bug at bay. I personally think its in my DNA. My father died at age 39. My mother was always sick and had trouble staying awake. She didn't make it out of the last fire. I wonder how many others, because of CFS, die in fires. Eddie Bauer (cfs singles yahoo group) passed away a few months ago, because of this illness, he make it out of the fire but didnt live as he had been severely burned. I think this "illness" is widespread. I had symptoms from childhood -- diagnosed with CFS in my 50's and am now 60. I bet there are soooooo many more

    glen
  19. valentinelynx

    valentinelynx Senior Member

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    Tucson
    No. I was very healthy, athletic and active in mind and body until sudden illness in 1993.
    All that happened to me in 1980 is finishing high school and starting college.
    That was a very good thing as far as I was concerned!
    I learned about the reality of CFS around 1995 from a friend who had become ill with it in 1975.
    She committed suicide about 10 years ago after being ill for 25+ years, and not wanting to go on without the support of her husband who had died 6 months earlier.
  20. meadowlark

    meadowlark Senior Member

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    In 1982 or 83 I began to suffer a daily headache which my doctor took to be hemiplegic migraine, meaning it not only gave me a migraine on the left side of my head, but numbness, inflammation and even semi-paralysis down my left side. If I had a fever, this would miraculously disappear. When the fever stopped, it began again. Even opiates did not counteract this pain. I went to work every day despite this ... which seems incredible when I look back. Then, in the late 90s, I began to experience about a dozen symptoms from the CCC. Now I have 2/3 of them. I was diagnosed with ME/CFS in 2001 but I date the onset as the early 80s. For the past two years I have been bedbound 90% of the time.

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