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For and against recovery whats your experience

Posted , 16 users are following.

Retriever
Retriever

Can we as a group try to collate those things which has helped recovery and those which didn't. My experience is exercise definately didn't.

3 likes, 92 replies

92 Replies

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  • karin65289
    karin65289 Retriever

    Posted

    I think that it's a great idea to share what has worked and not worked. Since  energy, or lack of, is bound to be a problem maybe be can just sart with brainstorming a few things.

    I would add length of illness, age and location.  Maybe list 1-5 things that have worked, 1-5 that haven't, keeping things very simple. Lists can always be expanded or shrunk.

    Once we have decided on a format it may not be that difficult to collate entries by cutting and pasting.  I don't know if we are allow to use this format for something like suggested. There is alway the possibiliity of starting a closed group on Facebook, which would protect people's privacy (if that's an issue).

    I think that you have a great idea, lets see how to make it work. Enclosing private email in the event that this gets shut down.  Cheers

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • alison44235
    alison44235 Retriever

    Posted

    Exercise helps me, getting out in the fresh air relieves stress.
    • GeorgiaS
      GeorgiaS alison44235

      Posted

      Alison that's a really good idea for some of us it's not for others. Exercicse can exasperate our conditions, it's called post exercise malaise.
    • amanda2966
      amanda2966 GeorgiaS

      Posted

      Hi. Thats how it is with me. i hate not being able to go for lovely walks and feel the fresh air on my face. Exercise kills me !!  hard to come to terms with it as i used to run miles every day and cycle miles too. Going from athlete to bed bound is so cruel. Had it 12 years now. No sign of getting better
    • alison44235
      alison44235 GeorgiaS

      Posted

      Everybody is different I know. I am really ill at the moment with M.E. I ache all over and the pressure I feel on my head is unbearable and I suppose I should not exercise but it is something I enjoy. I have been in bed for three hours this afternoon and will go to bed early tonight. I find talking to people very hard work and exhuasting. I had to ring an ill friend today and pretend I was not too bad. He has trouble walking and has just had a stair lift put in the house, at least I can walk about.
    • GeorgiaS
      GeorgiaS alison44235

      Posted

      The wanting to exercise thing is so complicated isn't it! I used to love playing sports, tennis, roller skating, anything, I was always active. I talked to a local lady today who I didn't realise is a sports therapist. She said to stretch a lot. Sounds good to me!
    • GeorgiaS
      GeorgiaS amanda2966

      Posted

      Amanda I found something that helps me to stand up more and feel stronger. Message me.
  • karin65289
    karin65289 Retriever

    Posted

    Fresh air and mountains refresh me spiritually - in the 17 years I've had ME/CFS I can only do very moderate walkiing, no more swimming (previously swam 3 miles), no more hiking - I  continue to challenge myself with exercize but usually end up in bed for several days or with a major relaspe.  I'm happy for you anyone that can exercise!
  • joanne71205
    joanne71205 Retriever

    Posted

    I appreciate my reply might be a bit controversial but CBT and pacing did it for me. Along with use of D-Ribose. I still have to manage my activity carefully but I am back at work full time and manage to exercise to a degree.
    • elaine62759
      elaine62759 joanne71205

      Posted

      I also found CBT and pacing really helpful. It hasn't led to a recovery but did definitely improve my condition. I was a volunteer on PACE trial at hospital and got CBT. They paid for taxis to and from treatment or I couldn't have got there. Before treatment I was struggling to walk down path to the taxi but a year later after treatment was able to walk 30 mins most days. I also found the CBT really hepled me mentally cope with the illness. Also tried GET - was told to try going on an exercise bike - huge mistake - made me loads worse and had big relapse!
    • alison44235
      alison44235 joanne71205

      Posted

      I could not go to work. I have had M.E. for 33 years. I do give talks and they are a killer, yet again I enjoy doing them.
  • Rachel1023
    Rachel1023 Retriever

    Posted

    Exercise doesn't nothing for me to takes every bit of my energy and it takes me days to recover.

    And i mean light exercise I feel like a zombie for 3 to 4 days afterwards

  • amanda2966
    amanda2966 Retriever

    Posted

    exercise is deffo a no no for me. any form of it and im in bed. i tried pushing myself walking and holing on to whatever i could to keep going. i walked for 5 minutes or so, got home and was confined to my bed. totally unable to do anything. also developed cold/virus. everytime i try to do exercise i come down with a cold/virus. so unfair. so cruel. cfs destroys ones life (if you have it severe of course)  12 years of severe cfs. my heart goes out to all those that have cfs so bad
    • GeorgiaS
      GeorgiaS amanda2966

      Posted

      I agree Amanda, I think it depends on how bad we have it. I've been virtually bed bound for 10 years and exercise is impossible for me.

      But a local ME group lady told me about a lady who had it so badly that she couldn't even move her hands and had to be taken to the toilet and wiped. Somehow she recovered and started an amazingly successful gardening buisness! razz

    • alison44235
      alison44235 amanda2966

      Posted

      I suppose I am lucky that I can do things. I do spend a lot of time in bed though and feel dreadful most of the time.
    • amanda2966
      amanda2966 GeorgiaS

      Posted

      Hi, and thanks for your reply. Im so sorry you too have cfs so severe. I really hope you recover. Thats all we can do is hope. sometimes, often in fact, i just want to give up. sounds awful of me saying that but my life is care staff coming in to do my personal care etc ( not nice. want to be able to run a bath and soak myself) How amazing the lady had it so severe and now has her own buisness. im so happy for her. I really hope you recover.  PS  it would be interesting to know how old the lady was when she first had it and how long did she have it for before getting well.
    • lynne69494
      lynne69494 amanda2966

      Posted

      Today l feel shattered, aches and pains with it, l know doing an hours gardening the cause, sort of knew it when l did it, but job needed doing, and we dont have slaves on command, so went for it and lived in hope.

      But l can get up, be it sleeping quite a bit,  and occassionally on a good day go out for an hour, be taxi most of way. short stroll, l do get frustrated, bored, down with it at times. But read of you who are bedfast all or a lot of the time, and mostly resolute, and humourous at times. Not sympathy, as that sounds patronising, but yeh admiration, so keep battling, l never give up hope and hope its same for others. lt should get far more acknowledgement research and support than it does. l,m sure in time they will know a better treatment, cure.  Best wishes.    

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