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Is there anyone out there with relapse and remitting ME/CFS?

Posted , 4 users are following.

Polly69
Polly69

Hi everyone!

I've had this condition for 20 years now. Was very unwell for two years when i first became ill but then recovered to say 80% of my original health with a few blips along the way. I've become unwell over the past five years due to hormones unfortunately and am now on my fourth relapse.

The question I have is, is there anyone else out there who has this type of the illness? When I'm well I'm totally symptom free and am able to do loads etc........ The combination of hormones and infection seems to set me right back again now and I'm more or less bedridden for 5-6 months at a time.

Would be good to hear from anyone.......

0 likes, 6 replies

6 Replies

  • elaine62759
    elaine62759 Polly69

    Posted

    Hi Polly

    I've had ME/CFS for over 20 years too and after being bedbound initially did improve but have rapidly gone downhill again the last few years also due to my hormones. I've been having spells where I feel a bit better for a few days and think I'm picking up then I feel worse again. I've tried everything I can think of but nothing is really helping greatly. It's so frustrating!!!! Although I once spoke to a woman running a B & B when on holiday and she told me she had ME/CFS for over 20 years then after the menopause all her ME/CFS symptoms went away and she felt better than she had done for years. I live in hope!!!

    • Polly69
      Polly69 elaine62759

      Posted

      Hi Elaine,

      Its maddening isnt it?!!! I'm certain the relapses are caused by the hormonal flares that I've been experiencing. The pattern seems to be an infection first then the hot flushes begin and then I'm back to square one again.

      Do you mind me asking how old you are please? I went through an early menopause and have been post menopausal now for four years so I'm hoping this isn't going to be the pattern for the next few years or so.

    • elaine62759
      elaine62759 Polly69

      Posted

      I'm 52 but felt my ME symptoms started to get worse again probably about 5 years ago although I'd say I've improved slightly the last year as I'm starting to sleep a bit better again thankfully as the hot flushes aren't nearly as bad now. I feel I've been left with a lingering fatigue on top of my normal ME/CFS and just can't seem to shake it. It's so annoying as I felt like I was finally managing to improve in my 40s and I put a lot of effort into my diet, pacing myself, managed to do some yoga, increase my walking and now I'm back to square one again! I'm really hoping that once my hormones finally sort themselves out I might improve a bit again. Caffeine and alcohol can make hot flushes worse so you could try cutting back on them if you have them. I don't drink alcohol at all now and stopped having any caffeine after 4pm replacing my evening cup of tea and chocolate treat with hot milk (but I still have the chocolate - you need some pleasures in life!) a couple of months ago and this has definitely reduced the hot flushes and helps me sleep better. I feel like I'm running out of things to try now - wish I could turn back the clock to when I was young and healthy!

    • lori93950
      lori93950 elaine62759

      Posted

      yes i went on hormones bhrt for about 9 months dont think it helped just put a lot of weight on me so i quit them . i was doing great right before i got sick felt the best i have in years then bam april came 2018 and ebv again ! my friends my age seem to be doing ok ... which is frustrating .

    • elaine62759
      elaine62759 lori93950

      Posted

      It feels to me like there is something missing in me now sort like my spark has gone - not that I had much of one in the first place! I was speaking to someone recently who was healthy before the menopause but now feels the same as me with fatigue, joint and muscle pain and brain fog which is making me think it's not that my ME/CFS which has got worse but it's the effects of the menopause I'm now dealing with. As the symptoms are so similar I was just assuming I'd had a bad relapse of my ME and couldn't understand why as I hadn't done anything different to normal. It's like my get up and go has got up and gone!!!

      I saw something on TV this morning saying that wild swimming in cold water like in the sea or a lake is supposed to help menopause symptoms as the shock of the cold water is supposed to alter something in your body. Not sure I'm brave enough to try it but I wonder if a really cold shower would help? I'm so desperate I'd try anything!

  • lori93950
    lori93950 Polly69

    Posted

    my ebv started at 41 for maybe 18 months and now again at 51 have ebv with mono this time .

    both times i believe its when hormones drop .

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