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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Post Exertional Malaise - is this what it is?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by JoanDublin, Jul 4, 2014.

  1. JoanDublin

    JoanDublin Senior Member

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    Thank you very much for your comprehensive reply. I agree with you about his 'real' understanding of pacing. At some level he knows what he needs to do but I think that day was a reflection of his frustration, combined with a need to be 'normal' with his friends. He knows he is paying the price so I hope we can move on from here having learned a hard lesson. He is normally very good at pacing himself especially after he met with Dr. Speight and the latter told him how important it was.

    There is little or no understanding of the condition here in Ireland. There are no specialist centres and no one within our health system that I can find that has any specific interest or knowledge of the condition. There is lots of sympathy though so Im trying to build on that, educate myself and in turn educate his docs (without pissing them off). Its a balancing act.

    My plan is to get as much testing carried out here as I can. I have to do that, on the one hand, strategically like you say. On the other hand though I owe it to him to advocate as strongly as possible - even if his docs think I'm a bit fanatic. Not saying they do, but it could be borderline!! I think you always run the risk of the wrath of the medics if you are pushing them hard.

    I am trying to compile a list of tests that I believe should be carried out and Im trying to research that now. Some of them (not many) will already have been carried out and I will ask his GP for copies of those results so that I can build a file on them. Im hoping to get to Belgium to see KDM at some point and the more tests I can get done here, the less expensive it will be. I'm an amateur at all this and I get confused with the tests, results, treatments, etc etc so my head is mush right now. I've made an appointment with his doc for tomorrow so I need to have my ducks lined up before I go in.

    I had wondered about a mitochondrial disorder too but is that not inherited? His illness was precipitated by him contracting EBV (misdiagnosed by his doctor by the way), viral pneumonia and chickenpox in May/June 2012 so because of that I was dismissing mito disorders? Maybe I'm wrong?

    Im very interested in your recovery from your bowel issues. He has been left to manage his bowel issues by himself to be honest. He uses enemas and sometimes a Peristeen Anal Irrigation system. He has three monthly reviews in the hospital and as long as his impaction isnt building up they simply check him over and send him on his way until the next review (or the next critical time when he has to be admitted for bowel evacuation if necessary).. He has managed to keep himself out of hospital as much as possible. Last time he was in was March of this year and before that it was October of last year.
    Valentijn likes this.
  2. JoanDublin

    JoanDublin Senior Member

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    No I hadnt heard of him. I will check him out. Thanks
    xchocoholic likes this.
  3. JoanDublin

    JoanDublin Senior Member

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    Thanks for that link. Will have a good look through it.

    He has been diagnosed already with ME/CFS. It started with a diagnoses of Post Viral Illness (which is what the hospital calls it) but has now moved to CFS (which is what his GP calls it) to M.E. which is what Dr. Nigel Speight calls it.....
  4. SOC

    SOC Moderator and Senior Member

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    That's too bad unless your GP understands that ME/CFS is not a psychiatric condition. Is the GP willing to do the necessary tests for orthostatic intolerance, endocrine issues, and so on? We have a problem with that here once the "CFS" diagnosis is official -- the GPs say those tests are not recommended for "CFS" and it's no use talking to them about symptoms after that. It's like they've gone deaf. :rolleyes:
    Valentijn likes this.
  5. JoanDublin

    JoanDublin Senior Member

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    I'm not sure what she will say but my plan is to try and challenge the diagnosis on the basis that not everything else has been excluded. She will probably think I'm mad, but hey ho....no harm in trying eh? :)

    The GP is fairly good...clueless but supportive if you know what I mean. I don't believe she views it as a psychiatric condition, well at least not totally. Jury is out a bit on that for me.

    Is there a thread or info somewhere which gives a basic list of conditions/tests which should be looked at so I can start a check list? Anywhere I've seen information on this it seems to be an overwhelming amount of tests some of which I don't understand so would be useless of me to try and ask for them! :) I will start my list with tests for orthostatic intolerance although I don't think it's a huge issue for him. He does have really bad balance issues in that he simply cannot walk a straight line without veering wildly to the side. Is that part of it do you know?
    Thyroid was ruled out early on as an issue so that's one down at least!

    Sorry for so many questions...
    Last edited: Jul 11, 2014
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  6. leela

    leela Slow But Hopeful

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    One of the very basic first tests a neurologist uses is to see if you can walk a straight line. If your child cannot do that without veering wildly, I would think that some kind of further neuro testing/imaging would be obvious--unless he has labyrinthitis or something.

    Would Dr Enlander in NYC be able to refer you to a specialist in Ireland? I just wonder if, being Irish, he is in touch with colleagues there.
    Could Dr Myhill's office suggest a list of useful tests to your current doctor?

    Just wildly brainstorming over here.
    JoanDublin and Valentijn like this.
  7. JoanDublin

    JoanDublin Senior Member

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    Oh please brainstorm away to your hearts content . Every suggestion is welcome. That's not a bad idea about dr. Erlander. Hadn't thought of that although I think he is from Northern Ireland which is under UK jurisdiction. Still, he may know someone here.
  8. JoanDublin

    JoanDublin Senior Member

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    Well I went to the GP and had a long chat with her. It was good, I think. At least she agreed that she would arrange other testing, particularly the symptoms that suggest neurology issues. She also agreed that she would work with me to systematically go through as much as possible to rule in or rule out other conditions.

    She did ask me not to rule out the possibility of trauma as being an underlying cause and while I genuinely don't think it is, I agreed that I would be open minded about the outcomes if she promised she wouldn't try to funnel us down a psychiatric road and she said she would absolutely not do that. He is my foster son and was subject to trauma from abusive parents as a very young child, although he has received very good therapy for this and is really an all round very confident and well adjusted young lad. Anyway, I'll keep an eye to make sure it doesn't get dragged off into the realms of psychiatric issues!! She did say that she absolutely felt that CBT would be of no use in his case so that's good! She also agrees that he doesn't have psychiatric issues at all. It's just that she has a special interest in trauma and the impact on the body of it.

    So a mixed bag, but she has promised to comprehensively review his case over the coming days and we can start ticking off things one by one to see what might show up. So any advice from you guys on testing would be marvellous. What I will do is put up a separate post later listing his current symptoms and maybe some of you, given your experience, might throw in a thought or too as to what might be worth testing for? Any help at all will be very much appreciated. Thanks a million!
    Valentijn likes this.
  9. xchocoholic

    xchocoholic Senior Member

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    Balance problems can be from ataxia. You could do the Rhomberg test on him yourself. Just be ready to catch him if he starts to fall. My doc had to catch me cause I couldn't feel myself falling.

    My ataxia appears to have been from gluten since it vanished 1 year post gf diet. I still wobble from time to time but it's probably from gluten cross contamination. It happens a lot if I start eating out.

    I suspect that gluten ataxia isn't as rare as they say. Folks in my celiac support group could relate but most didn't know what to call it. Their Doctors just gave them lame excuses for their balance problems.

    Dr Hadjivassilou explains ataxia. Tc .. x
    JoanDublin likes this.

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