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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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    He is definitely getting worse instead of better. Pains in his bones, he says. Feels sick. Said he feels like he did when he had the swine flu a couple of years ago...and he was really very sick then. I'm going to bring him to the GP just to be sure there is nothing else going on. The really sad thing is he is pleading with me not to bring him because he says 'it will just be a waste of time'. He's probably right. It's such a dreadful illness isn't it? And I feel so helpless watching him.
    Cheshire, Valentijn and SOC like this.
  2. Gingergrrl

    Gingergrrl Senior Member

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    @JoanDublin I am so sorry about your son and was wondering if you have any option of seeing a specialist in addition to your GP? Also are there any naturopaths in Ireland? They may have a different title than in the US?
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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Is he getting any symptomatic treatment, any type of pain reliever, paracetamol or a paracetamol/codeine combination over the counter type med. Even antihistamines for kids can be safe and help with pain and sleep but talk it over with your doc.

    Has he had any temperatures too? I think ask the doc for a full blood count test as this might give some indication if he has a new infection?

    Poor little dude.
    taniaaust1, Valentijn, leela and 3 others like this.
  4. JoanDublin

    JoanDublin Senior Member

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    Hi Ginger,
    He has been through a few different alternative therapies, including acupuncture, cranial sacral therapy, homeopathy and some kind of energy release work. All done through a specialist reputable practice here in Dublin. Some of the therapies helped a bit for a short while but none of them maintained the improvement. The energy release work and cranial sacral therapy improved things in the initial few weeks but then he seemed to plateau and started slipping back and despite regular sessions he never got back to that first improvement. His last session was a couple of weeks ago and we decided to give it a break for a while to see how he gets on. He is fed up trying things that dont seem to help so it's getting hard to motivate him. Of course it all costs money too which is in short supply at the moment so it's a matter of trying to figure out what I can afford and what might be the most benefit. Very confusing at times
  5. JoanDublin

    JoanDublin Senior Member

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    Thanks Heapsreal
    Yes he takes paracetamol regularly for pain and sometimes with a codeine combination, which he took last night because of the pain. He doesn't have a temperature even though he says he feels roasting hot at times, mostly at night. He just doesn't seem to be able to regulate how hot his body feels. He has a fan going in his room 24 hours a day just to try and stay cool. Yes, I think I will ask the doc for a full blood count but I seriously suspect that nothing will show that can be treated. I felt really sorry for him last night. He was lying on the bed and says 'I feel like my body is just breaking down'. It really is very hard listening to a kid having these worries and thoughts.
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The other thing i guess you can do at home is to make sure he doesnt dehydrate, one signs is a really pasty tongue. Even if u think he is drinking enough, if he is sweating more then normal then dehydration is still possible. Gatorade drinks can be helpful and kids usually dont mind the taste.

    Sometimes all we can do is ride it out, how long it lasts ??? Supportive care like pain relief, good hydration and try to get good nutrition, maybe a good meat and vege stew/soup, something easy to digest. I know your probably doing things.

    Your really stuck between a rock and a hard place. I hope things improve for you guys soon.
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  7. JoanDublin

    JoanDublin Senior Member

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    Ha! I think you must be a fly on my wall here. Yes, I'm making sure he drinks lots. He normally does drink about two to three litres of water a day but the last two days he doesn't seem too keen. I got him to drink a fair bit last night though. I mix fizzy water with a bit of fruit squash and he likes that. I also made beef stew two days in a row this week for him :) He is eating but feels nauseous afterwards. I will give the doc a buzz today and see if I can get in tomorrow to see her. It's probably a matter of riding this out. It's frustrating ain't it? The last time he felt anyway 'good' for more than a day or two was in January. It's amazing how time just slips by with this damn illness
    heapsreal likes this.
  8. Valentijn

    Valentijn Activity Level: 3

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    @JoanDublin - As ME patients we usually have unusually low temperatures. Mine is typically 36.0 C or under, though normal is 37.0. When feeling extremely feverish, and hot to the touch according to anyone else, my temperature is 36.5-36.9. Still below normal, or barely normal, but very high for me.

    It might be necessary to consider a fever based on what's now normal for him, rather than what's normal for healthy people.
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  9. JoanDublin

    JoanDublin Senior Member

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    I didnt know that about temperatures. He never seems to have a 'high' temperature, yet he reports feeling roasting hot at times, looks red in the face and is clearly really uncomfortable. I must track that with him. Thanks for that
    merylg likes this.
  10. daisybell

    daisybell Senior Member

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    My face is often very flushed when I feel unwell, and feels hot. My hands are usually cold...
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  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Likewise, but my hands do not feel cold.

    GG
  12. Gingergrrl

    Gingergrrl Senior Member

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    @JoanDublin I wasn't thinking of any of the therapies you mentioned and at least here in the US, the naturopaths (ND's) are more trained in functional medicine and looking at the individual person. Mine can order any test I want and can prescribe meds but is also extremely familiar with supplements. Although she is not a "CFS expert" she has by far helped me more than any other doctor I have seen (and she is the only one who suggested testing my EBV titers which turned out to be very high.) I was wondering if there was anything comparable in Ireland?
  13. SOC

    SOC Moderator and Senior Member

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    @JoanDublin,
    Have you managed to get your son tested for some form of orthostatic intolerance? It could be causing or exacerbating a number of his symptoms. Extra fluids and electrolytes can help, but many PWME need medications as well.

    Have you seen the ME/CFS Primer for Clinical Practitioners? In my opinion, it's not perfect, but it's a good place to start for symptomatic treatments. Section 5:8 Management of Related Conditions might be particularly helpful. It could give you a list of conditions to be investigated for your son.

    I'm not sure how things are in the Ireland medical world, but in the US I wouldn't recommend patients tell GPs they think they have ME/CFS when asking for tests because it seems to shut down doctors' brains. :rolleyes: I think it's safer to go in with the clear list of symptoms specific to a single condition. A mixed bag of symptoms seems to set off a hypochondria alarm in doctors. Mostly doctors are trained to deal with no more than three symptoms per appointment, which as we all know, is ridiculously small for PWME. But if we want acceptable treatment from doctors who are not ME specialists, we have to act strategically. That means we have to work within their system as much as possible, even if it means making multiple appointments and/or seeing multiple doctors.

    My daughter was 12yo when she first developed ME and 17yo when it got really bad. Now I'm tutoring two young men, 13yo and 16yo, who (we believe) have ME and are heading to INIM at the end of the month to get specialist treatment. I really empathize with what you're going through with your son. It's hard to watch kids try to cope with this horrible illness.
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    What is INIM?

    GG
  15. SOC

    SOC Moderator and Senior Member

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    The Institute of Neuroimmune Medicine -- where Dr Klimas, Dr Rey, and Dr Vera work.
    ggingues likes this.
  16. Gingergrrl

    Gingergrrl Senior Member

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    @SOC The primer for clinical practitioners is wonderful and I just read through the whole thing. Where did you find it and do any MD's in the US actually receive this book?!!
  17. SOC

    SOC Moderator and Senior Member

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    I learned about it here at PR. :) Of course MD's in the US don't receive this book.... sigh. It is, however, in the US Dept of Health and Human Services National Guidelines Clearinghouse here which should give it some credibility with US doctors -- if only they were willing to read it. :rolleyes: If you have a doc willing to learn something, I'd point them to the Clearinghouse rather than giving them a hard copy. They'll probably consider it more legit if they get it from an official source.
  18. Gingergrrl

    Gingergrrl Senior Member

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    @SOC Bummer the docs don't see this book but it figures :rolleyes:...
  19. taniaaust1

    taniaaust1 Senior Member

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    Your son.. his symptoms say probably a mitochrondrial disorder to me.. has bowel issue (severe constipation I think is more common in mito disorders then ME thou it does happen in us too) and then there also his hearing issue (very common in mito) . Thou ME seems to also be a mito issue, I think one can still see the signs that more mito stuff is going on then typical ME cases.

    I know you say your son understands pacing but I personally from what he's done, I dont think he has fully understood it and the consequences of not doing it properly. Usually when one is pacing properly and feeling better, one knows to slowly increase activities over time, one takes in consideration how much one did the day before and how much one will be doing tomorrow, its not just about how much one feels one can do right now. With good pacing, the waters are always being tested one could say before diving in the deep end and just hoping for the best.

    If one is feeling a bit better, one may go for a 10min walk (or only increase activity by several minutes, depending on how severe someones ME is) ... several days later it may be a 15min walk instead of 10mins if that 10 mins didnt make one sick etc. To suddenly go for a 40min walk and then play football on top when your son hasnt even been well enough to go to school this year, is a MASSIVE leap and not pacing. (I think most of us would of been shocked to read he went and suddenly just tried to do that.. understandable thou if he didnt know).

    Doing something like this can someone MUCH WORST and they may not recover from it, a huge increase like that can send someone into a worst baseline with this illness. I really really hope your son hasnt done this! His best chance of recovery is probably in his younger years so its important he takes great care with activity increases so that he keep heading in the right direction for improvement and not mess it up. (most of us have experienced really messing up our improvement at some time or another).

    Sudden improvements can be uncommon and should be really treasured like gold and at those times we need to be very careful not to blow our sudden turn into better health by overdoing it and loosing the improvement.

    I know you have some money issues but its also probably essentail to get him to a ME specialist, otherwise he could end up having this illness for life and need care, going to specialist greatly probably increases his chances of maybe recovering. The sooner you do this, probably the better. If he gets sicker he may be too sick to fly him anywhere at all to get help so you need to do so now (many of us are too sick to fly).

    I could only say bad things about his doctors from the things you've said, sounds like he hasnt had enough tests!!. and extensive illnesses should be considered as a whole.
    ...........

    I also dont think his current bowel program sounds too good with having to take enemas, to me says he probably hasnt had things managed as well as they could be.

    Both me and my daughter have had severe bowel issues to the point where we needed daily enemas but we both are off of these with good bowel treatment. (my bowel issues even prolapsed my bowel at one point cause I hardly had any peristalisis, my daughter has a spinal issue so had her bowel affected throu that). Good bowel specialists have both of us not needing enemas no more (we both had difficult cases which werent easy even for the specialists, the normal bowel laxatives did nothing at all for me at even large doses and in combos.

    My daughter originally had to be hospitalised a lot for her bowel before this was sorted due to impactions etc, it took them ages to work out her treatment (she had to go onto 3 different things for her issue).

    Both of us due to the treatment we had for this, we both have better functioning bowels and I dont even need to take anything or mine any more (I do think she's doing much for hers now to and may not now be havin to take meds). Im just telling you all this as there may be some room for improvement there. (I suspose that if your son does have mito disorder that treating that may help his bowel too?).

    I wish you and your son the best, I really hope he starts to improve from that crash soon. (Ive had severe crashes last 3 weeks, often crashes that bad will leave me at a slightly lower baseline then before). Make sure he is taking it very easy, he should take care not to exert himself at all if he can still he starts improving from that crash, even if it means not doing basic things.
    Last edited: Jul 10, 2014
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  20. xchocoholic

    xchocoholic Senior Member

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    Have you considered consulting wit Dr Rodney Ford ? He's a pediatrician and gastroenterologist. His info is on the web. Tc. X

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