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Are there symptoms you had in the early stages of ME that you no longer get?

Discussion in 'Other Symptoms' started by Ysabelle-S, Oct 30, 2017.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    Yes, I also had soaking night sweats, which I very rarely get now. Also extreme unexpected weakness, I think. I recall this at my current house, which I moved to after my suicide attempt about 2 years after the illness started, so I can't be sure it wasn't due to that.

    My early symptoms are listed here: http://forums.phoenixrising.me/inde...-and-results-of-1995-step-exercise-test.1650/ but I still have some of them. I don't have the energy to read it at the moment.

    The 2nd year is detailed here, including the suicide attempt (WARNING): http://forums.phoenixrising.me/index.php?entries/health-notes-including-suicide-attempt-1995-6.2099/

    It's a pretty long read, and I can't be sure what is due to ME and what is due to the overdose/results of treatment for it.
     
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  2. alex3619

    alex3619 Established Member (Voting Rights)

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    I used to get sudden weakness a lot, where my legs would become hard to control for example, but even now I get this occasionally. It became much less common but never really went away.
     
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  3. MeSci

    MeSci Senior Member (Voting Rights)

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    I find it hard to be sure whether the lower frequency is due to better planning or anticipation.
     
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  4. ukxmrv

    ukxmrv Established Member (Voting Rights)

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    very high temperatures with sweating / delirious - first 15 years or so.
     
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  5. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I forgot all about the night sweats! They were a lot more common in those first 5-6 years.

    Night sweats were kind of unpredictable but seemed to come with most crashes. I would wake up with my t-shirt soaked through, mostly in the neck and chest area, not the underarms. I'd have to get up to change my t-shirt and pillowcase and then adjust the top sheet because that also had a wet spot where I'd soaked it with sweat.

    My night sweats have not completely gone away but they are much rarer now. I can't remember when I had this happen last. But I'm pretty sure I've posted about it on the PR forums sometime during the last few years.
     
  6. Forbin

    Forbin Established Member (Voting Rights)

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    Yeah, night sweats were something that I only experienced in the first 2 or 3 months after onset. I also had no appetite, which led to a loss of about 1/8 of my body weight in a couple of months before it stabilized. I also went through a period of really bad migraine headaches in the first year - something I'd never had before. Fortunately, they never returned.

    ETA: Maybe a month into illness, I briefly had a rash of scattered, flat, pinkish spots on my neck, torso, abdomen and arms. It lasted only a day or so, but I'd never had a rash like this as an adult (or even after age six). The closest match I could find for the rash was a viral illness that very young children get called roseola (Sixth disease). It's quite rare in adults, but it can happen in those not exposed as children. It's caused by HHV-6 (which some have associated with ME/CFS) and less frequently with HHV-7. Since it was so transient and unaccompanied by fever, I kind of wonder if this was an old virus briefly re-emerging as some other herpes viruses do. I never saw the rash again.
     
    Last edited: Dec 11, 2017
  7. Subtropical Island

    Subtropical Island Established Member (Voting Rights)

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    I'm at my first year now.
    When I try to list my symptoms I always forget the most important one(s) and go on and on about any minor niggles. Sometimes, (ETA: especially on 'good' days,) I feel like I must be a hypochondriac. Surely, if you can't pin down your major symptoms?!?
    (edit: deleted excess - there's no doubt that I'm not a hypochondriac on bad days but I'm doing well in pacing. Maybe the list of symptoms that people have in the first years but not so much later are the ones most amenable to rigorous, long term pacing?)

    I find this list of symptoms describes my experience of ME/CFS better than most, except that PEM is the most obvious, clear, consistent "symptom" (phenomenon really). [was going to multiquote to highlight the specific ones that really hit the nail on the head but will rest instead - I've liked them anyway]
    So, if it all goes away this coming year, what am I left with? Currently feeling hopeful, even optimistic. Maybe don't tell me, maybe I don't want to know...?

    (Removed off-topic bit)
     
    Last edited: Dec 11, 2017
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  8. Dechi

    Dechi Senior Member (Voting Rights)

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    I’ve « only » been sick for a little over 3 years and I still have all my initial symptoms except hypoglycemia. This one was really scary so I’m glad it’s gone.
     
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