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Long term cfs

Posted , 13 users are following.

june83698
june83698

anyone else had cfs really long term?

2 likes, 26 replies

26 Replies

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  • Joerathinam
    Joerathinam june83698

    Posted

    I am having CFS for the last 32 years since 1983 i.e. from my 18 years now I am 50 years old married with one daugher working as general administrator in an export company.  I am managing CFS with medicine and self hynotheraphy.
  • paininthebum
    paininthebum june83698

    Posted

    Hi June,

    My wife has had chronic fatigue for years. She has low energy all the time and come the afternoon she feels like her battery has drained and needs to recharge with a long nap.

    • sueliz57
      sueliz57 paininthebum

      Posted

      Hi, I think you often do need to rest in the afternoon and I do get a little annoyed when medics say you shouldn't do that. I think our experiences of living with this illness should also be taken into accoutnt.
    • georgeGG
      georgeGG sueliz57

      Posted

      Sueliz, sadly too many doctors suffer from  a severe case of one mouth and no ears. I consider it always bad for patient care. After three medical disasters and some outstanding successes I admit, I consider myself as the only executive doctor for my I care. I look for is much good advice as I can get from the professional medics.
  • georgeGG
    georgeGG june83698

    Posted

    What is long term to you? To me 6-12 months is long term in the context of suffering. My 10 years lost to ME and a further approximately 10 years of gradual recovery is excessively long. Yet comparatively 10 to 20 years may seem depressingly 'normal' to many following these CFS/ME discussions.
    • sueliz57
      sueliz57 georgeGG

      Posted

      Hi George, do you think you ever really get over it? I wonder when people say they have, perhaps they are in remission, or as we know, everyone's experience is slightly different, so maybe they don't have as many symptoms.

       

    • georgeGG
      georgeGG sueliz57

      Posted

      No, I would say not, since you ask. for the purpose of answering general enquiries about how are you then I'm fine. they can eat nearly everything including things that I could not tolerate on time. I can be modestly active. this is the area where you are probably right to talk remition . If I am careless and do more physical activity then is wise for me to do then I pay with being washed out and useless for the best part of three days. I will also be unable to do any complex task although Etters many years since it was as bad as brain fog. A big aspect of recovery is that I can have fun and enjoy life. When in the throes of ME life was misery 24/7.

      As an indication of recovery I have during the past four and a bit years learnt to play the piano. I am now able to play some of the easier passages of Mozart's sonatas. My memory and motor skills must be in quite good shape as I can play these quite complex passages from memory.

      . 

       

    • sueliz57
      sueliz57 georgeGG

      Posted

      Hi, it sounds like you are making somegood progress looking after yourself and I'm glad you can do something creative such as learn the piano! Long may it continue!!
  • dragontest
    dragontest june83698

    Posted

    Hi June,

    About 20 years up to now...

    I have gone through the "why me" period, I just try to manage what little energy I have to stay in some form of work so I can pay the bills that keep on dropping through the door. I do not have a social life any more as It was an either -Or situation either do some work and be paid or have a social life and no money…

    It sucks really this ME, but I do try to be positive and pace my activities, but some days I don’t have the choice and I’m sleeping for the day with what feels like every joint and muscle in pain these are my tramadol days…

    • sueliz57
      sueliz57 dragontest

      Posted

      Hi,

      I'm with you on everything you say. I had to give up work as that was all I had the energy for and like you had no social life. But don't give up hope, maybe you're in for a wonderful period of remission!

      Take care

      Liz

  • sueliz57
    sueliz57 june83698

    Posted

    Hi June, 

    Yes, like the others I too have had it on and off, long-term since 1983. That year I was pregnant, had shingles, had an emergency caesarian and then had proper flu, all in all it was too much for my body. Of course, at first nobody knew anything much about it so Iearnt to get by on my own. Now, at least if you tell people they might have heard about it and doctors don't dismiss you as being in need of counselling or anit-depressants.

    There have been many times when I've been in remission and able to carry out a "normal" life which I'm very glad about. 

    In the last two and a half years though it has returned badly enough for me to have to give up work, and like dragontest, it was a question of working or giving up and living with no money. I left work on ill-health retirement.

    Since then I have taken a lot of supplements as I take omeprazole for a hiatus hernia which I believe is preventing my body getting correct nutrients from my food. I have also developed osteopaenia as a result of less calcium due to the omeprazole inhibiting take up from my diet. The supplements I take are calcium, vit B12, magnesium, omega 3, co-enzyme Q10 and D ribose.

    How long have you had it and how do you cope?

    Take care

    Liz

  • dragontest
    dragontest june83698

    Posted

    Hi June,

    I think setting realistic targets and goals that you wish to achieve is very important with ME/CFS as these little steps all add up to a bigger picture of recovery, and calculating in for the relapses and setbacks is also a part of the learning to live with the condition.

    However, exercise at the wrong time during a recovery period leads only to a bigger relapse in my experience, it is all about listening to your body. I personally stay positive as I can, (which can be difficult at times) and think there is always a tomorrow…I plan my days out as much as I possible, I think initially I started to do this due to brain fog and not getting stuff done.

  • alison44235
    alison44235 june83698

    Posted

    I have it now for 32 years. I was pregnant and that in itself was causing a lot of stress between me and my husband he wanted me to have an abortion. My forth child. I kept her, she is lovely. I had a spotty virus on top of that and the doctors said it was germain measles. It wasn't. Jo was born on Sept. 12th 1983 and hardly slept for 4 and half years. sorry too tired to wrtie any more, best of luck everybody.
  • JulieBadger
    JulieBadger june83698

    Posted

    23 years at least. I'm now 37yrs old.  The last 2.5yrs have been my worse yet.  I don't know how to get better.  Every day is a challenge, every night I end in a variance of yuck. I'm rubbish at managing it.  I have Fibromyalgia as well. The 2 conditions don't like each other, it's a constant battle which one has the most hold of me.  Is it the pain or is it the energy?  Sorry for the moan, I had a good Mon & Tues, so I'm now having a rubbish Wed & Thurs sad just feeling sorry for myself.  Now I can be more cheerful for when the kids & hubby get home. xx 
    • dragontest
      dragontest JulieBadger

      Posted

      Yep ME/CFS is not a nice condition /illness to have it takes away so much from people’s lives. I only wish they would find a cure for it that works with everybody... it’s the rollercoaster ride you get with ME that I find hard… your feeling slightly better one minute and totally wacked out he next and no warning either. In addition, you don’t always look “broken” to others around you so they find it hard to judge how you are. I’ve stopped going out with any “mates” as they don’t understand when I’ve had enough and need to sleep… not quite house bound but not having a social life either.

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