Open Heart Surgery with ME/CFS Question

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I believe I now have ME but not sure when it started. Some of you will have read my previous posts and know that I first became ill in December 2013. My symptoms were a 24/7 flu like headache, light headedness /dizziness, occasional fatigue (but not too severe) general feeling of unwellness. 

Lots of visits to GP lots of blood tests but symptoms continued but fluctuated in intensity from day to day. I tried various therapies such as chiropractor accupuncture diet etc - nothing helped.During this time I was able to go to the Gym 4 times a week with no ill effects.

In Febuary 2015 my GP found that I had a heart murmer and I was subsequently diagnosed with a faulty Aortic heart valve, and it was thought that this was the cause of most of my problems.

In June 2015 I underwent open heat surgery for a replacement valve, and made a remarkably quick recovery for a man of my age (68) and as part of the Cardiac Rehab walked between 3 and five miles every day.By the end of August I was told I was OK to go back to the Gym - which I did.

Unfortunately the original symptoms remained and in Nov 2015 I went down with Campylobacter since when the symptoms greatly increased and I am now massively fatigued. My GP ran a load of blood tests and thinks I now have ME/CFS, which I was not sure about myself but now feel it is very likely.

My question is this do you think it was ME from the beginning? Would I have been able to recover from such a huge operation so quickly with ME and go back to the gym?

If it was not ME then the original symptoms were due to something else, which I need to get to the bottom of.

Thankyou for reading

Rob

 

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5 Replies

  • Posted

    Hi Rob 

    Similar story hear, I was fully active until I developed cancer in 2014. The onset was cancer related fatigue (CRF) which feels different to what ever this is right now. 

    once I had surgey the fatigue went away, only to return when chemo started. Since treatment ended in September 2014 I've continued living with Fatigue and brain fog.   It was manageble and although it effected my day to day life very little I paid it little to no attention.

    Then in October last year these symptoms went from manageble to severe literally over night with no warning.  I've been living with this now at its elevated level for only a few months and know there are others who are effected far greater then I. 

    depending on how you look at this....  I consider myself to be fortunate to have had cancer as I've gained an additional medical professional to my armory. and not only is my GP working on this but also my oncologist team.

    Recent tests have finally given some pay dirt.  I've a slightly low vitamin D count and testosterone level but both my GP and Oncologist doubt that this is the cause for the symptoms.  Both of them are referring me to various specalists. 

    In addition one of the cancer markers (LDH) has just been discovered as being high.  not to be concerened too much at this stage as no other marker is elevated and although they are not suspecting cancer they are going to carry out a few tests in the next few weeks. 

    LDH may well be worth reading up on, and considering what you have been through you may benefit from asking your GP for an LDH test. 

    LDH is an enzyme apprently responsible for converting sugar to energy.  It is also a massive indicator of how your organs are performing, although should not be used as a standalone test.  High levels of LDH can also be a sign of other tissue damage which I think in my case will likely point towards my muscles and will account for the severe muscle pain that I've been experiencing for almost 3 months now. 

    If LDH is responsible for energy levels and thus could also effect memory shortages and other cognitive issues then I think its a major breakthrough in my case that something isnt right. 

    Now all we need to do is find the cause and then fight it.  Im optomistic but think you may need to ask for an LDH test.   Considering what you have been through your GP may have decided not to do one as it could be high has it is.  but as I am not a medical expert, only reading up on the stuff that effects me, it could be worth a shot.

    Hope you get well soon 

    regards

    Andy 

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    • Posted

      Hi Andy

      Thanks for your reply, I have also followed your thread on your problems.

      You have done a great deal of research and I will certainly look into the LDH issue. I am also researching  Mitrochondrial Dysfunction and ATP. There are so many conflicting therories and  such a lot to get your head round. It makes it more difficult when you are feeling so unwell.

      I am glad you have found a sympathetic and cooperative GP. I wish mine was!

      Good luck  and keep  posting.

      Regards Rob

       

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    • Posted

      Thank you Robert

      Getting well again, has become an obsession, and I'm trying to be mindful of all the other types of illnesses with similar symptoms out there.  

      Honestly, I thought that I'd feel better if it was atleast medically proven that something was going wrong. Now that it's sunk in, I am still none the wiser over what it is or how to fight it.

      Researching LDH, I took it for granted that the test is similar to the Vitamin D test or hormon level test where you have a simple score...  But no. there are 5 levels of LDH associated to different regions of your body, I really should have asked but considering the muscle pain and that all other tests should have rulled out (Organ failure, Blood conditions, Possible/pending heart attack, stroke) I am confident that my LDH levels relate to the Muscle group. 

      So I've started to look down that avenue. Again so many roads, none leading directly to Rome. 

      Considering what you've recently been through and that you have some healing to do, I am not sure if you will have an accurate LDH score. Open heart surgery is such an ordeal but then we are talking June last year right?  how long does it take for the chest muscles to heal so you can get an accurate test?  now that's the question. 

      I wish you good health 

      regards

      Andy

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  • Posted

    My best guess (and I emphasize the word "guess") is that you originally had a mild case of ME/CFS; then it became more severe after the Campylobacter
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    • Posted

      Hi Jackie, you may be right, I am just finding it difficult to get my head round. I can't help thinking that if the original symptoms were something else other than CFS, and they put it down as CFS, I wont ever get well.

      hope that makes sense.

      Rob

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