m.e/cfs getting worse

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Hi all

i've had m.e/cfs for almost 2 years now, triggered after glandular fever. at first it was manageable, then end of 2017 until around May 2018 I was bedbound and it was pretty severe. It began to ease after May until about October, I could do things like go out and socialise and even work a couple days a week but I certainly wasn’t over doing it. However I stopped working in October due to feeling worse, and now I’m back to being bedbound. There hasn’t been any stress in my life or any other illness that could’ve triggered my symptoms to get worse, has anyone else found that they get worse for no reason? And any advice?! Thanks! Georgina x

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8 Replies

  • Posted

    Hi from October to March I always have severe flare up I dread it I go from living 40 / 50 % to litrelly having to have someone bath me once a week , think it's the cold the damp etc all I can sugest is take iron , Vit D and liquid magnesium as helps with the symptoms sending hugs x

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  • Posted

    i was managing mine for the first 5 months had some bad days and was feeling a bit tired but not as many as im having now !

    im into month 8 and since i stopped exercising i have become worse. i dont understand this bloody virus at all .... they say rest rest rest ..... but ive gotten worse. i manage a few errands on ok days but seem to pay for it the next day . GOD help us all with this awful evil virus ! thats all i can say and that most eveeybody gets better just takes time .

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  • Posted

    Hi Georgina,

    I didn't get my cfs/me from a virus but my symptoms go up and down and change alot. From what I've read and experienced, it can take the body some time to hit payback sometimes but maybe like Alexis is saying, for you around this time knocks you back.

    I'm currently taking feroglobin which has vit d and iron and think it's helpful for some of my symptoms. I feel I might be coming down with a virus and so aren't feeling too great but not at my worst which was where i was unable to eat a sandwich and was very scary.

    At present my walking is worse and last year at this time my walking was bad but not as bad as now and I feel I am doing less? I am resting better I think and most days don't feel i have the slurred speech and inability to talk like I used to have more of. I think i have reached a plateau at present and can anticipate potential "payback" activities and sometimes manage to rest before them so I have enough energy. I messed up in summer by trying swimming, only a few lengths and I exercised in the water first by doing light stretches. unfortunately, it totally floored me for 10 days. I talked with a physio about this who is experienced with cfs/me and he said that this was too much and I need to build up to it by just going in the water and walking a little for a while first. He also said I wasn't ready for the pilates for pain class as I am already doing too much just in how I live my life. I have children and am a single parent.

    Sometimes I feel we don't always have the luxury of knowing what exactly it was that tipped the balance and drained our battery. Often its a contribution of alot of things.

    Beverley

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    • Posted

      Thanks so much for your reply beverly really helpful! sorry to hear you aren't doing great with your walking, i wonder if it is anything to do with muscle weakening? i started having protein smoothies to just try and keep muscles strength whilst im not doing any activities maybe you could try them too! best wishes keep going you are doing great! 😃

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    • Posted

      Thanks Georgina,

      It's hard to describe, the muscles seem to spasm? it sounds odd but my butt goes totally tense and then my legs kind of drag along. very irritating. or my knee seems to seize up so some muscle and some nerve issue.

      I'm not great at making smoothies but am having calcium and magnesium when I remember.

      Beverley

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  • Posted

    My M.E./CFS was triggered by glandular fever over 20 years ago. I made the mistake of pushing myself to go back to work before I was ready and spend several years working part time then having a huge relapse where I bedbound for weeks or months, I picked up again, went back to work then relapsed and was bedbound again, etc. I eventually lost my job which was upsetting at the time by has turned out to the best thing that could have happened to me. Financially I'm much worse off but can manage but energy wise it has given me the opportunity to try different things which has finally got me from being bedbound to being able to do some things most days with some total rest days needed if I've overdone it. The things I've found the most helpful are pacing myself, healthy diet (particularly B vitamins, iron and magnesium and having a form of protein with every meal), CBT, setting small goals such as managing to improve my walking over a few years from struggling to walk down the path to being able to walk for an hour on a really good day, gentle yoga stretches and listening to guided meditations. I think it could be an after effect of you going back to work which has made you relapse so badly but the fact you did pick up before means there is a really good chance that you will improve again but just try and not overdo it when your energy comes back and listen to your body, not your mind! Really hope you pick up again soon!!!

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