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Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
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What Will Happen To M.E.?

Discussion in 'General ME/CFS Discussion' started by Karenironside, Apr 3, 2014.

  1. brenda

    brenda Senior Member

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    No. Not any that I know of. The ones who get better do so by researching biochemistry and epigenetics and especially by improving gut function and treating pathogens. Thinking that you are gaining health by exercise is a fall waiting to happen. When one is in recovery mode, then the body will allow exercise to take place but relapse is just around the corner where it will all be wiped out leaving you back to square one but in despair.
     
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  2. Snow Leopard

    Snow Leopard Senior Member

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    I have been exercising for about 2 years (on my electric bike) because I enjoy it. I am a lot stronger than I was and exercise itself is a little easier as I am fitter. I am a lot stronger on the bike, I have most of that power back in my legs that I had as a teenager (I used to ride up and down hills every day, 45kph on the flat on a mountain bike etc)

    But apart from improved fitness, my symptoms, particularly my perpetual headache, brain fog etc have not changed at all.

    I say do it if you enjoy it, just don't expect it to be a panacea. I think those who claim that exercise led to recovery, happened to be recovering anyway.
     
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  3. justy

    justy Senior Member

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    These are all massive achievements - and as you say above, you have not been ill for as long as others so hopefully you can overcome this with good rest, pacing etc

    I also did this about 3 years into being ill, but unfortunately despite believing I was cured I actually wasn't and six years ago I had a horrendous relapse which I am still not really recovering from. I wish I had realised that I was only in remission and not cured. I had no idea I would be having to live through the nightmare of M.E twice - although this time it is far worse, I also realise I did still have M.E in the in between years, just more mildly.

    Back to your blog post - can you say how you devised this programme? and do you go to a clinic or something? we don't have a clinic where I live and no specialist help and advice at all.

    I have tried very slow very gentle stretching many times now, but find I just cannot tolerate it. I also used to walk every day for 5 - 10 minutes, even when I was dragging myself around and while it gave me a great sense of achievement and I enjoyed It I found it was making my health worse.

    In the end I gave up my walks and got a wheelchair and did LESS. Now 3 / 4 years later there is an improvement in my functioning, but yes I feel less fit, but I am able to do more of things like study, talking, cooking etc. I have recently tried gentle tiny walks and swims (5 minutes in the pool floating) which feel lovely, but 3 days later I feel like I have been hit by a truck and need to go to bed for days to recover - its so disheartening.

    I guess I have been sick for many years now - even with the sort of remission trs been about 20 years. My hopes are now pinned on finding what is driving the inflammation in my body and trying to treat that. My M.E doctor says that I have neuro inflammation that is now causing small frequent daily seizures and when I do less these get more under control so its a delicate balance all the time.

    I also wish I could go out more alone - I have not done much of this for over 5 years and anxiety hits whenever I try to, but being out and about when you are feeling so ill makes me feel very vulnerable, so I find I cant really cope. ets hope my Dr finds some critters to kill and that helps me feel better!!

    All the best with your recovery and blogs,
    Justy.
     
    Last edited by a moderator: May 19, 2014
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  4. Artstu

    Artstu Senior Member

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    Electric bikes are brilliant aren't they :) It's all about getting something out of life, despite living with this illness. As you say exercise is not a cure.
     
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  5. Kina - my doctor gave me 20mg Amitripyline for pain to help me sleep but the real game changer was the 2mg of melatonin that gives refreshing less disturbed sleep. Normally only given to over 55s for insomnia in the short term but as my consultant prescribed it no problem. Within two days I was feeling better than I had for a very very long time.

    I wish I had known about it months ago.
     
  6. To be honest, I just read as much as I could, took what made sense and slowly through an evolutionary process worked out a system that helps. It isn't perfect I'm sure and I have no illusion that there will be times where it doesn't work but since starting it 5 months ago I have seen significant improvements all round.

    If you want to message me privately about it, I will talk more. I'm just wary about suggesting something publically that somebody new to this illness might take as fact.
     
    justy likes this.
  7. Kina

    Kina Moderation Team Lead

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    Thanks for the info @Karenironside

    I was prescribed amitripyline for sleep and had horrendous side-effects from a little tiny dose. I haven't tried melatonin for ages -- I used to get a combo with melatonin, sunthionine, and 5-HTP. I can't even remember if it worked or not. I think I remember being overly drowsy in the AM or something but maybe that's from the combo.
     
  8. Kina two sets of drugs similar to Amitripyline killed me as did Am for a few days but over a week I felt better. I've had zero repercussions from Melatonin. The next morning, I woke up already feeling better. It might just be you or me or the combination! Who knows!
     
  9. Kina

    Kina Moderation Team Lead

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    I think I will give it another shot at some point -- just melatonin without the other thought.
     
  10. I would seriously try it. I can't believe the difference it made for me. My clarity of thought, energy levels, how I sound all has improved so so much!
     
  11. Kina

    Kina Moderation Team Lead

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    I will let you know of my experiences with it when I do try it again. :)
     
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  12. SDSue

    SDSue Southeast

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    This is great perspective, and just what I need to hear. Every time I feel the slightest bit better, the first thing I want to do is some form of exercise. It's crazy, but I guess it makes me feel somewhat "normal". And it never ends well.

    Next time I have a window above a 2 on the 1-10 scale, I'm going to follow your advice and do something meaningful. I'd love to hear more ideas :)
    Kina, I, too, have good results with Melatonin. I use an extended release form (OTC in the States). It comes in 5 mg tablet which I break in half. (I'm experimenting with even less as I would like to get down to 1 mg if possible) I found with regular Melatonin, I was wide awake after 4 hours, but with the XR, I sleep much longer. Sweet dreams!
     
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  13. justy

    justy Senior Member

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    once I got above a 2/3 on the scale regularly I decided to get a wheelchair and have some days out with a friend or family member to push me. We very occasionally got to a museum or gallery and then somewhere very quiet for lunch. So long as I try not to walk too much I can enjoy it and it gives me a sense of achievement that trying to go for long exhausting walks doesn't.

    Oh and I also started an online degree course in English literature - i'm now in my third year, but need a year off next year as its draining me too much.
     
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  15. Allyson

    Allyson *****

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  16. No because any improvement no matter how potholed the road to it may be is worth reinforcing in yourself the belief that over time significant progress can be made.

    It is a million tiny steps back and forth but eventually I will be a million times better. Not better perhaps but lots better.
     
  17. Today's Blog: Things Just Aren't As Good As You Think They Are - Sorry


    Sometimes being honest is the hardest thing.


    www.whatwillhappentome.net
     
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  18. taniaaust1

    taniaaust1

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    I read your latest blog post but my computer isnt loading the comment part up (its my computer not the site) so I'll comment here.

    I myself find it can be handy to listen to others when they give me warnings like that.. Im often too into what Im doing (and when we are happy, we just dont want to focus on the negatives), to notice myself worsening and others who have got to know me well eg my careworkers, my boyfriend, tend to notice me going downhill before I do.

    I suggest to try to pay more attention to what your husband is saying next time as he may help you avoid a crash in future.

    Also be aware that you possibly have reached a certain point that many of us get to, in which we cant progress over without going downhill. I hope thou Im wrong about that and that you can keep on getting better.

    best wishes
     
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  19. adreno

    adreno 3% neanderthal

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    "Progress" - the holy grail of civilized society. If you're not making "progress" you are antisocial.
     
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  20. justy

    justy Senior Member

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    Its taken me 6 years of my latest serious relapse to realise I do not need to 'progress' or push myself to recover as I now realise that my recovery is never going to happen this way.

    I do what I can, when I can and I never give up hope, but equally I am learning more and more very day to accept I am where I am and that I can live a good life like this - I am no longer striving for my life to be at some mythical future time.

    Having said that, this is my experience I am talking about and I have been ill, to varying degrees, for nearly 20 years. You have not been ill for so long, so may bounce back and fully recover, and I hope you are able to. I have to say though that my experience has also taught me that those who rest, rest, rest early on have the best chances of recovery, as do those who seek medical help from specialists early on. I wish I had known this in the early days of my illness - or even when I had my relapse 6 years ago.

    Thanks for sharing your thoughts in a blog and opening up debate - I do enjoy your blog posts.

    All the best
    Justy
     
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