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Does having ME/Chronic Fatigue generally shorten our lives.

Posted , 8 users are following.

celia39638
celia39638

Hi there! I have had Chronic Fatigue now for over 14 years, I was 49. I was diagnosed just after I had my thyroid removed. I have had all the tests you can possibly think of and I've had all the usual illnesses connected with CFS  eg. Glandular fever, continued viruses (I catch absolutely every virus going) Shingles etc etc.

I spend days on end in and out of bed or just sitting in a chair. I rarely have what I call "Good days" but when I do I cherish them. I have tried all the "normal" ways of living ie pacing little excerzing etc etc.

I'm Not and repeat Not depressed but I do wonder how many more years I will have left with this debilitating illness. I am now 63 I love my Husband, my family and my grandchildren are my life but I do often wish that when I go to sleep at night I will sleep for ever.

Reading some of your success stories is heart rendering and I wish you all the success and happiness in your lives.

My question is....  Does having ME/CFS shorten our lives or should we still expect to carry living it to its normal conclusion........... Just wondering

 

2 likes, 37 replies

37 Replies

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  • alison44235
    alison44235 celia39638

    Posted

    That's a good question I have never thought of that. I am nearly 70 and had ME for 32 years. I do often feel as if I just cannot go on well most of the time as I just cnnot stand it any longer or other peoples misunderstanding of it. I also have a frozen shoulder which has just finished me off. Been suffering with this for over 4 months and it has stopped me doing every thing I enjoy and driving.
    • celia39638
      celia39638 alison44235

      Posted

      Hi Alison, I know how you feel about your shoulder. I had what they thought was a frozen shoulder 2 years ago. Having the quaterzone injections did not help at all. Every day I wished I wasn't on this planet but then...... I saw another gp who first sent me for an ex ray... Which didn't show an awful lot..... Then she sent me for a ct scan..... Which showed I had a problem with my shoulder which needed key hole surgery.... I can't remember what the medical term is (brain fog)....it's when the shoulder blade grows and needs to be filed back so that you have full movement in your arm....... It took a while but I have full use of my arm and no pain.... It's just a thought...... Good luck I hope you get it sorted soon
    • ChrissyC
      ChrissyC alison44235

      Posted

      Hi Alison. I've seen you mention your shoulder on other posts. Why isn't anything being done for you regarding this? About 5 or 6 years ago I also had a problem shoulder with extreme pain where I could hardly bear to move my arm a millimetre and therefore could scarcely even dress or undress myself. After a few months I had keyhole surgery on the rotator cuff and then it took time and manageable exercise to get it back to normal as it healed but it's completely fine now. I know yours might not be the same but surely something can be done. When you have ME life is effort enough and to have constant pain like this in addition is enough to push you over the edge. I completely understand or at least I think I do.
    • alison44235
      alison44235 ChrissyC

      Posted

      I might be wrong and probably am. It could be my age, I am nearly 70 and the NHS might think I am not worth bothering about. I am just about hanging in there wih it all but am nearly been driven over the edge. My ME is so bad that I just feel as if I cannot go on. I am going to have hydrodilation privately on Monday, I am hoping this will help my shoulder, but I am afraid it might not.
    • ChrissyC
      ChrissyC alison44235

      Posted

      Aw you poor thing - hug! (all be it a very gentle one under the circumstances) 70 is NO AGE especially these days although I appreciate that those of us with ME often feel older than our years. I don't believe the NHS would write you off at your age. I know it's hard with ME to even think about the extra energy that would be needed to get through an op in hospital and all it entails before, during and after, but the pain is dragging you down too. And so you go round in circles in your mind which is ALSO exhausting. Can't win! I am willing your procedure on Monday to help you. I just can't understand why you've been forced to go down the private route when you're in so much pain. Trouble is with ME you're not up to pushing either, I know. DO keep in touch if you can find the energy. Thinking of you X
    • alison44235
      alison44235 ChrissyC

      Posted

      Thanks for that. I was quite agile before doing my shoulder in. It has made me feel very old and disabled. Not looking forward to Monday, but you never know it might work.
  • GeorgiaS
    GeorgiaS celia39638

    Posted

    This is such a great question and it's something I often wonder about!

    My life is basically wonderful apart from that it feels as though ME is sabotaging and stealing it. I've had it for 10 years on the severe scale, as in being virtually bed ridden.

    I sometimes have hopes of recovery or at least improvements and I do my best with diet, supplements, herbs etc, but at other times I lose hope and picture years more of it, perhaps 10, 20 or even 30 because I'm middle aged. That thought horrifies me!

    In answer to your question I don't know for sure of course but I imagine that because our bodies are so sick we probably won't live as long as if we were still well. And I've read scientific research articles about people with ME dying from organ failure, usually the heart or liver or suicide.

    But then, I've also read about people getting well completely or having improvements so I keep going. I've found that certain herbs and foods help me, and friends and family are beginning to understand that this illness is serious, at long last! eek lol There's research happening so we have every reason to be hopeful.

    Perhaps looking ahead at years and years of this is only making things worse, and like you I can't help plummeting into depression and fear sometimes but I always go back to my natural default mode, which is optimism! razz

     

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