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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

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  • Ravenwood
    Ravenwood celia39638

    Posted

    I've read the medical studies on this.  Check out PubMed.  Anyway ME/CFS people are a tad more likely to suffer from (dang I just got stuck.  Brain fog.  What is the word?...) cardiovascular (ha!) events like heart attacks and strokes.  The rate is a bit higher, and scientist thinks it has something to do with our problems with temperature regulation, dizzyness, orthostatic intolerance, and other things that are indicitive of a cardiovascular problem  The next highest cause of death for ME/CFS is suicide.  This is depressing, but I do understand it.  Sometimes and exhaustion and pain are too much . . . Anyway, that is what is known so far.  As more research is conducted, maybe we can find out how to treat this horrible disease.  Good luck!
    • artistmike
      artistmike Ravenwood

      Posted

      Funnily enough on Wednesday I have another appointment with  my Cardiologist after suffering some rather unpleasant arrythmias and twice having been admitted to hospital for Cardioversion to get my heart firing properly again. ... Of course all that caused yet another relapse in the M.E. ... You can't win can you... :-)

      I do know that  Dutch Cardiologist/CFS specialist Dr. Visser has said that the people with ME/CFS that he treats tend to have somewhat more arrhythmias than his cardiac patients do, which is quite an interesting fact and lends itself to the theory that some doctors hold that CFS/ME is of itself a cardiovascular disorder. Of course my cardiologist was unaware of the link and I got the usual blank look that we all get from doctors, when I tried to discuss it...

      Why is it that doctors don't realise that if they want experts on ME/CFS they should try asking the patient. They are the ones that often have had it for years, done the research know more than the doctors and have personal experience in huge depth. ! ...  :-)

    • georgeGG
      georgeGG artistmike

      Posted

      It sound like the consequence of specialisation.

      Perhaps a specialist is surprised to find a person wrapped around the special bit they are looking at. To be fair , or even more critical, the doctors do have a name for troubles outside their speciality. It is co-morbidities.

    • caitlin39841
      caitlin39841 artistmike

      Posted

      hi artistmike. hope the next appoinment with ur Cardio. goes better this time round, minus the potential relapse repucations. what might help the Cardio understand the mechanisms of imapired cardiac function (ICF) in ppl with ME/CFS, might be the research done at Newcastle uni. (UK). Prof. Julia Newton & her research team have completed a number of research projects on ME & ICF. the results are published in the 'Journal of Internal Medicine' March issue 2012. the research findings are discussed in detail in the 'breakthrough' journals, published by ME Research UK (issues 13, Spring 2011 & issue 16, Autumn 2012) www.meresearch.org.uk. that research explains scientifically, the mechanisms through which a range of cardiac symptoms come about with ME/CFS. hope this helps & all good luck with ur forth coming appoint.

      Caitlin

    • celia39638
      celia39638 Ravenwood

      Posted

      I must be "Dumber than Dumb". In all the years I have had this disease I can truelly say I have had no concerns about my heart or having a stroke. What you say does make sense . With all the problems of adrenaline rushes it must have extra pressure on our heart's. I've always thought it was my other organs that needed to be looked after. Why hasn't my gp told me this...... It's crazy.

      Most times I'm very careful of my diet but this makes it even more important. 

    • Ravenwood
      Ravenwood artistmike

      Posted

      I agree that patients know so much more of this disease than most doctors.  It's not fair.  Anyway, I hope your cardio appointment goes well. Just from a personal experience, don't let them run a stress test where you run unless the doc says it is totally necessary.  Otherwise, the blow-back from running will really increase your symptoms. 

       

    • artistmike
      artistmike caitlin39841

      Posted

      Thanks for that Caitlin, I've read that and it's interesting stuff. I have the appointment this afternoon and I'm also talking to my doctor about a potentially associated problem with my Calcium and Vitamin D levels.. Fingers crossed something gets sorted out of it all ....
    • artistmike
      artistmike Ravenwood

      Posted

      Thanks for that, I think the stress test is doubtful in my case as my heart problem is mainly electrical in origin but I'm already prepared to tell them I won't do that one, my last bad relapse lasted two months and I don't want another... :-) ..
    • guy72767
      guy72767 artistmike

      Posted

      Hi Artsitmike, 

      Good luck today.....Sounds like we all have lots in common outside the cfs stranglehold..like your goodself, used to go fishing, walking, painting....still try to pick up some brushes occasionally...lol....I live a little further down the line from you so i imagine we both share the wonderful light.....very best wishes to you and everyone else on this discussion...Guy   

    • caitlin39841
      caitlin39841 Ravenwood

      Posted

      i've read in some literature (Cardiologist, Dr Stephen Sinatra et al) that ME/CFS ppl's lives are 25% shorter than the average. the reasons given were primarily cardivascular. cardiac failure, secondary to failure of mitochondria in the heart muscle, he explains, is one of the main reasons. he's author of ''The Sinatra Solultion - Metabolic Cardiololgy''. my guess is this more pronounced for ppl with a hereditary susceptibility in this area.

      Caitlin.

    • Ravenwood
      Ravenwood caitlin39841

      Posted

      Gah!  That's worse than what I got from my research.  I haven't heard of this book.  I'll check it out.  Thanks!
    • GeorgiaS
      GeorgiaS artistmike

      Posted

      Ask the patient! God forbid that doctors would ever have to realise that they aren't the experts on everything! eek cheesygrin
    • GeorgiaS
      GeorgiaS georgeGG

      Posted

      Lauging out loud George about specialities having people wrapped around them! Hilarious  lol
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