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Does chronic fatigue syndrome progress

Posted , 10 users are following.

nichola99319
nichola99319

Hi, am learning lots about the condition, and i know symptoms can fluctuate. i just wondered can the condition itself progress.For example could a person who has mild CFS, progress/deteriorate to moderate CFS or moderate to severe CFS?.

thanks

0 likes, 43 replies

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  • littleme1969
    littleme1969 nichola99319

    Posted

    I would say yes.. Ive had it for 21 years.. it has fluctuated over that time, but with every new relapse i seem to get more new symptoms sad But thats not the same for everyone.  My condition has varied from moderate to severe and back again many times, but i am lucky in as much as i get long periods where im still mobile and able to have a life of some kind. Others are not so lucky and are constantly stuck in relapse mode sad.. its such a wide variation.. what one person will experience , will not be the same for everyone else. Always best to focus on your own journey instead of how its effecting others and worrying if that might end up being you, because nothing is written in stone with CFS. smile
    • GeorgiaS
      GeorgiaS littleme1969

      Posted

      That's really enlightening for me littleme because I've had it for 10 years and I always wonder what people mean when they mention relapse because I don't get enough respite to experience relapses. It's been more or less the same all the time.
    • nichola99319
      nichola99319 littleme1969

      Posted

      Thanks littleme, I just wondered because I think I have it mild, but having flare up every few weeks which last days or weeks, longest being 4 weeks. I  Think I have had it a long time, but never crashed up until this last 12 months, and crashed several times now, so I wondered if it progressed. I know I am very lucky compared to others so I am not complaining at all, I just want to understand the condition really.I can manage to work, but take time off sick when bad. 
    • wknight
      wknight nichola99319

      Posted

      The clue is in ' flare up every few weeks'  how much are you doing between flare ups? Try reducing what you do and see if the flare up goes to a month. If it does then that is progress.

      What I did was to find the point where a flare up would last only a day or so. Then I used that as my base energy point so I went several months without any flare up. I then built on that slowly, bit like someone trying to run a marathon, you never run 26miles at the outset. Slowly my body has learnt to accept those new energy levels and its working. but its very,very hard to control yourself and you mustnt be tempted to say I will just do one more thing and then stop

    • nichola99319
      nichola99319 wknight

      Posted

      Thanks, I am just getting over a flare up so am still just being very careful, but have decided to cut everything right back, maybe just a little walk with dog, and gradually build up a bit more. When you say you used the point of flare up as base, would you then just build up gradually again? 

       

    • littleme1969
      littleme1969 nichola99319

      Posted

      One thing i have learnt about this condition is its made worse by hormones.. I get increased symptoms when i ovulate and also a bit around my period.. so it may be worth doing a chart to see if thats your issue also
    • wknight
      wknight nichola99319

      Posted

      Yes so once I know the energy level that doesn't cause a flare up I start from there. But its a very gradual build up, so if we take  walking dog as an example I would start with say walking the dog to the end of the road, the end of my road is not very far!. If that doesn't cause a flare up do that for say a month. Then next month add on say 10% of that distance. Keep doing that for several weeks and if no problems add another 10% if that makes sense.

      I also never do an exercise like walking the dog every day. My exercise has been cycling so I would leave several days rest before I try again.

      The problem is that everyone is different, but for me the success has been very small steps. I was a world class boom and bust person, just ask my GP, until I started pacing and for me it has been very successful.

      Tomorrow if the weather is nice I am planning to break my cycle record by going  a bit further. But I have been resting and building up energy for this. However, if I wake up tomorrow and don't feel good it will get shelved for a few days or I will do something very easy. I listen to my body now and only push it in small amounts but I at last feel I am winning

    • nichola99319
      nichola99319 wknight

      Posted

      Aw that's fab thank you, I will do something similar and see how I go, fingers crossed,

      thanks you

    • jinny23
      jinny23 wknight

      Posted

      Hi

      What wonderful advice.

      That for me is the hardest part....reading my body!

      In time.,

      Thank you

  • dragontest
    dragontest nichola99319

    Posted

    I am sad to say in most people YES to your question, having had ME for close on 20 years I can see a downward decline and an extended recovery period after a relapse, and the relapses are closer together than they were.

    Staying positive and looking forward to good days gets me through the bad days.

    Nobody appears to have the same symptoms or reactions to M.E. and the treatments given to aid recovery. However, as old age comes in to play, the underlying cause can at times be down to having M.E. such as developing osteoarthritis, which is a common condition in an ageing population. (Also known as degenerative joint disease or age-related arthritis) exercise is said to help this condition such as walking and cycling but with M.E that is the last thing you can do.

    Every part of the body can be affected by M.E in some way, the Brain, speech, muscle control the list goes on and on, my neurologist at the hospital told me the more damage you do to an impaired body the heaver the toll is on the body over time, making recovery times longer and longer. He did go on and say I needed to just potter about and take greater care of my body.

     I did not have the heart to tell him I have little control on the way M.E affects me and my life, as pacing is difficult to manage with such a fluctuating disease. But you tend to work with the “deck your dealt with” in this life and give it your best shot.

     

    • nichola99319
      nichola99319 dragontest

      Posted

      Thanks so much for the reply, it sounds like you have it severe dragon test . Am so sorry to hear how bad it gets for you. I think positivity is a wonderful thing, but hard to do when your having a flare up. I really didn't realise it got progressively worse, I thought people had it at different severities from initial diagnosis. 
  • sally_14743
    sally_14743 nichola99319

    Posted

    Yes

    so it's a tough disease as you almost walk a tight rope of having a life to prevent depression due to not having a life ..and not doing too much so as to relapse or worsen...

    once you learn to have a life with cfs without relapsing you do see improvement ...but it's a tough tight rope to walk ..takes time to work out your balance that also enables you to move forward ..

     

    • nichola99319
      nichola99319 sally_14743

      Posted

      I can imagine, my problem is the boom and bust , and on good days I feel normal, am so lucky to get weeks this way, but I need to now learn to not over do it, but that's the hard thing to know what will tip you over the edge and make you crash. I can just wake up and boom am crashed, it's so weird. And that's what worries me about the future, if it progresses and work etc.
    • sally_14743
      sally_14743 nichola99319

      Posted

      You will learn ..

      and the key is excepting you have cfs and not battling it but viewing it as a disease like lupus , diabetics etc one that you have to accept manage and live with ..but the wonderful thing about cfs is that you can recover .. The annoying thing is to recover you have to accept you might not in order to stop battling ... I hate this illness it is the unknown ..but there are so many people who have fully recovered and there are many who haven't .... 

    • GeorgiaS
      GeorgiaS sally_14743

      Posted

      'The annoying thing is to recover you have to accept you might not in order to stop battling'

      My head's spinning trying to work that out Sally! exclaim

      If we acccept that we might not get well we can lose hope. And surely to stop battling is go roll over and die? From personal experience of it I have to battle every day to make sure I take my herbs, eat healthy food etc, keep up with the latest research, find something that makes me feel happy every day.

      I'm not criticising just what do you mean?

    • sally_14743
      sally_14743 GeorgiaS

      Posted

      I know it's weird....

      but it's not giving up its acceptance ...

      its I have cfs and I can still have a life by adapting how I do things and when by accepting the illness ..

      by thinking I want to do this how can I do it without using too much physical or mental energy.. Standing still uses more energy than light walking so if u were going to stand still arrange to sit.. If a lot of people overwhelms you plan to go and sit In your car for 20 mins shut your eyes relax then go back in...or to sit in a quiet room somewhere when needed ..

      occupational therapists for m.e. Tailor your therapy to your life style ..they don't say u can't they say how could you??? Because as u chug along so to speak without the crashes or relapses in health your immune system can suddenly switch into working properly ...and you start to improve .....I am quoting my husbands OT ... He has started to improve because he now tailors everything to accommodate his cfs...my husband just said to say..it's not mind over matter ..you can't fight it with will power it's a physical illness and you've got to allow your body to heal ...most people who get cfs/ m.e have always been high achievers ...pushed themselves used mind over matter... Hope that helps 

    • GeorgiaS
      GeorgiaS sally_14743

      Posted

      Thank you Sally, I'd love to be able to say that helps but  I can't because I live on my own and for basic survival I have to spend too much energy.
    • nichola99319
      nichola99319 sally_14743

      Posted

      Thanks Sally am slowly getting my head around it with the help of this forum x
    • wknight
      wknight GeorgiaS

      Posted

      I too live on my own but its amazing what you can do to limit the amount of energy you spend. e.g. using online shopping especially for groceries or click and collect so in and out.

      Sometimes it works the other way in that because I have to get up and do something, provided I don;t go overboard then I actually feel better because I haven't just sat there and that gives me positive thoughts that I can do something. As always the key is not too much

    • GeorgiaS
      GeorgiaS wknight

      Posted

      For the first years of ME I used to go on my motorbike to town for organics foods but it wore me out so much that in the end I changed to online shopping, and although the foods isn't as good it's such a relief to not have to push myself so hard!

      One of the things I've had to learn is finding the easiest ways of doing everything and finding shortcuts so I hear you loud and clear! And I'm with you too on that just sitting doing nothing can be so soul destroying and counterproductive.

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