The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Am I getting better? Thoughts appreciated.

Discussion in 'General ME/CFS Discussion' started by Nightingale, Jun 14, 2018 at 5:56 AM.

  1. Nightingale

    Nightingale Chronically Cool

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    Hello all,

    I've been ill for 2.5 years, with moderate to severe disability. But lately I have noticed a lot of improvements. It didn't happen all at once, but over the past few months things have been getting steadily better. I'll put it in list form to make it easier:

    - I used to have to have a big lie down after a shower and I'd be knocked out for hours. Now, I'm able to rest for half an hour to an hour in an armchair, and I can still help with dinner prep.

    - I am able to go out more often. I still can't walk around very much, but I can go out in the morning, have a rest at lunch time, and still be able to do things in the afternoon. Previously I was only able to go out for an hour or so in the morning, on a very good day.

    - My brain is clearing up, to a degree. I've been able to budget, meal plan, and remember previous days better than ever. I even sat in on a small, one hour a week uni course. It was hard, but I did it.

    - I feel less dizzy less frequently.

    - I can drive myself around and go on outings by myself, without a carer. This would have been impossible a year ago.

    - I can sustainably do 5 to 7 minutes of exercise almost every other day without suffering the next day for it.

    I don't want to get my hopes up, but I'm seeing some real improvement here. I also want to note that I have noticed I have a definite problem with gluten and I get much more tired after eating any, so I'm sure that's a bit of a factor.

    Anyways, I just wanted to know if anyone has had similar improvements or can shed light on what's happening.

    Thanks! :)
     
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  2. alkt

    alkt Senior Member

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    I am really happy for you and have no doubts every one hare is also happy and wishing you continued improvement . I just hope you do not massively over do some thing and bring about a crash as difficult as it is you still need to remember to pace yourself and listen to your body .best wishes for continuing improvement and hoping that your part of the group that fully recovers and has a far more normal healthy future .
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @Nightingale It definitely sounds like you are getting better to me! I was curious what treatments you did (if any?) and also what kind of exercise you are able to sustain for 5-7 minutes? That is remarkable to me and I hope to reach that level some day! Best wishes to you and I love your avatar quote!
     
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  4. Wishful

    Wishful Senior Member

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    My situation isn't quite the same, since my ME doesn't include the physical reduction most victims suffer from. My main symptoms is mental lethargy, but I also get muscle aches, and altogether just don't feel like doing physical effort much of the time. My PEM from physical exertion is now effectively blocked by cumin.

    Recently I've had to do some strenuous and lengthy physical effort: cleaning up a property of accumulated junk. This requires driving about an hour, loading my truck and moving other heavy stuff around, then driving back. Unloading and moving stuff into new piles is done partly that day, and partly the next. I expected this would be a nightmare, with many days of recovery needed per trip. Instead, I've found that I can do another trip the following day. No unusual fatigue (except when I forgot to take the cumin). Furthermore, a few days ago (after eight or so of these trips), I realized that I was feeling pretty good. Still some mental lethargy, but I felt better than I did before all this extra exercise. I only have another trip or two to do, but I'm going to have to experiment with more demanding exercise than my 45-minute walks.

    I did overdo it one day, having to lift heavy furniture up into a bin. Very sore muscles for days, with PEM despite the cumin. I've felt worse the last few days, following a similar trip that needed extra driving. I've been wondering today whether it's from that extra driving, or from not continuing (it's been too rainy) the every two days routine of extra effort.

    I don't know how much of my experience can apply to victims that suffer from serious physical lethargy and limited endurance. However, there might be a benefit from a specific level of exercise. Tricky to experiment with if you are vulnerable to crashing from exceeding your limits. I'm just wondering if Nightingale managed to push her limits just enough to improve. It's more likely a different cause, but I thought I'd mention my apparent improvement from extra exercise.

    @Nightingale , are you sure it's gluten specifically, and not carbohydrates in general? If it is gluten, maybe you've managed to improve your gut health, and can improve more with further changes to gut health (diet, probiotics, eating more raw veggies which are covered in different bacteria). There are others here who can offer advice on improving gut health.
     
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  5. AdamS

    AdamS Senior Member

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    This is great news!

    Our of interest is it summer where you are? I often notice a signicant uptick in health during the summer months.
     
    alkt likes this.
  6. ebethc

    ebethc Senior Member

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    are there any guidelines for CFS recovery re a timeline? e.g. at a 7 or above on the disability scale for a period of "X"... 3 mos, 6 mos, 12 mos, etc.

    other illnesses do this, but I"ve never seen it for CFS
     
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  7. Wolfcub

    Wolfcub

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    @Nightingale
    That sounds really positive, and I hope indeed that gradual general improvement will continue for you. It seems that's good news. Kind thoughts.
     
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  8. Mary

    Mary Forum Support Assistant

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    @Nightingale - that's great news to hear! :thumbsup: Is there any particular treatment, supplement, etc. which you credit with your progress?
     
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  9. WoolPippi

    WoolPippi Senior Member

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    Yes, I experienced the same. Slow slow improvement. After a few years of this I decided I was in recovery :)

    Prepare to be scared though, whenever you have a set back. But don’t panic if you do, you are wise to get scared. You have been burned by this disease, of course you’ll get scared. But only time will show if fear is warranted so don’t let the fear get to you. Just let it sit with you a while but don’t let it dictate any expectations you have for the future.

    Keep listening to your body. Gluten? No gluten.

    The shower thing with me was the body not able to handle impulses from the outside that upset the equilibrium: warmth and being upright. Had to do with salt, electrolytes, blood pressure and the organs that dictate this all: adrenals and their brain counterparts amygdala and pituitary.

    I wouldn’t do any exercise that makes you sweat. Anearobic is the way to go. Weightlifting or push ups or planking.

    I got my full brain powers back and am back to writing scientific articles. It’s amazing when the day comes that you can think again and think about other stuff than the ilness. I celebrate this day with you when it comes. Over time your cognitive powers will get better and better. Be patient. With me it took four years, from being able to think about something else to the ability to think at scientific level again.

    You are getting more and more robust. Resilient. Because you have taken away burdens from your body. Keep doing that. And don’t dispair when things go wrong and you loose some gains. You will probably regain them. Scared is natural, just don’t let it get to you.
     
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  10. WoolPippi

    WoolPippi Senior Member

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    I was severly ill for four years. Bed ridden. Then four years of “what’s this? I’m not as ill anymore, dare I dream?” House bound.
    The last two years I am in full recovery. Meaning I do have some chronic things but not the CFS anymore. I am 46 now.
     
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