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This is how I am different

Discussion in 'General ME/CFS Discussion' started by optimist, Dec 13, 2014.

  1. optimist

    optimist Senior Member

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    Hello friends!

    I have been pretty much back and forth with myself of what I am 'having' - is it ME or is it something else. When I read many of the posts here I can relate to so many situations and symptoms, but still I seem to differ. There are days when I must sleep several times, can't think, super brain fog, wired/stressful, irritable throat and nose, flue like feeling, feeling very down. Fortunately those days have gotten more rare.

    Then there are days when I can actually go to work for a few hours and take a run in the forest and feel quite good, but still quite mentally fatigued and stressed out. These days are also not very common, but they happen.

    Mostly I am somewhere in between. It's like I go from very, very bad, to almost close to remission. When people ask me "How have you been lately", I often reply "Like a JoJo".

    I do not get muscle pains as I see most in here do. And I am not sure about the PEM. Once in a while it seems that I have it, but mostly I do not.

    Does this sound like ME to you?
     
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  2. adreno

    adreno PR activist

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    PEM is pretty much a cardinal symptom of ME. If you don't have that, perhaps you are in the clear. Almost anything would be preferable to ME/CFS.
     
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  3. optimist

    optimist Senior Member

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    I do hope I am! So far, it seems just as chronic though...
     
  4. melamine

    melamine Senior Member

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    optimist - I did not have muscle pains until after a third bad infection, years later, and they are not of a Fibromyalgia type, but more myositis-like. It's not a necessary symptom.

    You say you do not have PEM, but from what you describe I'm wondering if your bad days are in fact PEM - induced - overdoing on some of your good days, and paying for it by the next day or 2 - but not always?

    At the very least, your health sounds fragile enough that I would do everything possible to avoid exacerbations if I were you, as well as to make sure your nutrition is on sound footing, and that you are doing as much as possible to maintain balance in every way possible. If you don't think you have what many of us here have, you don't want to get to the point where there is no doubt that you do if you can avoid it.
     
    Last edited: Dec 18, 2014
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  5. optimist

    optimist Senior Member

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    It could be... but, almost all of august I had almost just good days and I took full advantage of my energy every day, with out any PEM. I thought that I was on my way out. Then, I got the flue and was set back a lot when it was over. But, I had a slight upward going trend the following weeks. Then I was hit by another flue, and now I am pretty much back to where I was a year ago...

    Thanks for the good advice! :)
     
    melamine likes this.
  6. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Sounds very wise. Just live all around healthy, get minerals, avoid stress as much as possible, avoid excess exercise, get lots of sleep, use moderation and avoid fads. Better to be merely viral than post-viral.

    @optimist Nobody knows what it is anyway, no matter how many "expert" panels come up with successive criteria that replace the previously authoritative criteria. Or take a tour of the world's top 6 experts - who all have different theories.
     
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  7. optimist

    optimist Senior Member

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    You guys are right. It sure is a confusing place to be in, but I am and will be an optimist :)
     
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  8. melamine

    melamine Senior Member

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    There is no better attitude!:)
     
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  9. Martial

    Martial Senior Member

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    Wish you the best of luck in whatever you find to help you!
     
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  10. justy

    justy Donate Advocate Demonstrate

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    I go in and out of moderate and severe - able to be out of bed and cook a meal if I don't leave the house even in a wheelchair to completely bedbound according to the weather, the seasons, the drugs I am trying, an extra infection or virus, over doing etc.

    You may well be doing the same thing but in a higher functioning category. I have also been mildly affected as you describe and know what that is like - at times I could swim or cycle so long as I rested a lot as well. Please be aware that if you do have M.E, it can become worse.

    Mine has done through a mixture of doing too much with life stress with a serious infection so

    4 children + husband away from home for work +trying to do a degree+ pushing myself to garden a lot+ measles was my perfect storm that 6 years ago ended my near remission and has caused me to become mod/severe. Then I thought I was recovering from that slowly over the past few years but now am in the upper part of severe most of the time.

    I have never had severe relentless muscle pain. I can have other types of pain, but pain is not a predominant symptom for me.
     
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  11. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Hang on - you do know that PEM has symptoms like flu, don't you? So your first flu - did it come soon after you taking full advantage of your energy?

    I think that many of us have kept thinking that we are catching colds and flu before realising that it is in fact PEM. It took me years to make the connection! By then I had overdone things much too often, and failed to pace myself. Please don't do that!
     
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  12. optimist

    optimist Senior Member

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    Thanks for sharing your story. It helps to better understand my own situation reading your experiences.

    That one I've actually missed! Very interesting! Thank you @MeSci! The first time I got the flu that time, I related it to getting it from my mom and sister who had it a few days before. But, it could very well be coincidental. It was very unusual that I would catch it again so soon after though. Can't remember ever experiencing to get two in a row like that.

    So, that could mean I have a sort of mild version of PEM then... I will need to keep an eye on this now that I am enlightened on that issue!
     
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  13. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    What about low body temperature? Alcohol intolerance? Insomnia?
     
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  14. optimist

    optimist Senior Member

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    Are these also signs on PEM?

    I haven't measured my temperature, but I normally do not feel cold. However, I often get boiling hot in the evening. Last night and the one before I also woke up so hot that I was almost expecting to see smoke, ahahaha :) (I relate the latter to me taking baking soda for the last few days, as I didn't have it before).

    I never drink, so I wouldn't know about that.

    I've had severe insomnia for many months until recently. I sat up super duper wired till between 4-7am almost every night many months in a row. That somehow normalized after cutting back on coffee, but I am still not able to sleep before between 1-4am.

    Thank you guys for all the help and support! I appreciate you very much!
     
  15. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    No, but they are often found in people with CFS.

    From what I see, you just have a persistent virus, maybe with an immune system that's more reactive than usual. You don't seem to have any pathologic immune activation, as in a post-viral syndrome. I'd relax :)
     
  16. optimist

    optimist Senior Member

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    How did you deduce that?
     
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  17. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Well, you have no symptoms that can't be accounted for by a virus (or other infection). Some can be persistent, despite what doctors might say, so duration of your symptoms cannot be a reason by itself to suspect CFS.
     
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    In case you're not familiar with the symptoms of ME/CFS, @optimist, you can find some details in this article.
     
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  19. optimist

    optimist Senior Member

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    MeSci likes this.
  20. Valentijn

    Valentijn Senior Member

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    @optimist - I think I may have had intermittant ME episodes prior to unmistakable onset. I would have weeks or months where it seemed like I was always getting sick, especially when I was attempting an aerobics class and then a Tae Kwon Do class. I would make it to one class, then be too sick to attend the next one, then recover enough to go again. Basically I'd make it to 1 or 2 classes per week out of 4.

    If you're getting the flu a lot or if it doesn't seem to go away for weeks at a time, PEM is a definite possible culprit. And if that is happening, it might be very important to stop "taking advantage" of good days with enthusiastic activity, and instead to scale back to something you can handle without any symptoms resulting at all.

    If you do come down with a nasty virus at any point, strap yourself into bed for as long as you can bear it, and don't be in a rush to get back to work/school/exercise. Sufficient rest might make the difference between staying in the mild/intermittent category and moving into the moderate/severe category.
     

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