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Lessons from ME/CFS: Finding Meaning in the Suffering
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CFS vs Idiopathic Chronic Fatigue

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by svetoslav80, Aug 22, 2011.

  1. svetoslav80

    svetoslav80 Senior Member

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    I don't have CFS. My chronic fatigue is different, because I don't have PEM. Because I wasn't able to understand PEM I often recommended exercise to my friends in PR. Now I understand that exercise just worsens them. I started this thread to explain more about my condition and eventually ask if there are others like me here.
    The thing is that I'm able to exercise - I can still cycle hard for an hour. Now that I'm used to not being understood by healthy people, that I'm sick, sometimes even pr members ask me "So, when exactly are you exhausted?" , or "Is your condition just psychological then?". I'm exhausted all the time. I feel like I have drunk a bottle of vodka the previous day and have an awful hangover - that includes awful fatigue, heavy head with headaches, brainfog and palpitations. Or, I feel like I've caught a cold - the symptoms are the same as hangover, aren't they (excluding the sore throat)? Now I don't know about you, but in the years when I was healthy, even that I sometimes caught a cold or drank and had an awful hangover the next day, I was still going out to cycle. While not in best shape and not being able to compete with others, it was still some kind of training, which didn't make me feel worse. I'm doing the same now when I'm sick with chronic disease. My condition is as psychological as cold or hangover are psychological. They aren't psychological! I'm just able to make effort without consequences after that.
  2. Esther12

    Esther12 Senior Member

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    Hi Svetoslav. It does seem like there are lots of different types and causes of debilitating fatigue. It does make it hard for us to work out what is best for ourselves, and advise others, particularly when so much of the research in this area just lumps everyone in together.

    Sorry to hear about your troubles. It's good that you're able to exercise without much trouble, but I've got no idea what to suggest to help with the constant sense of exhaustion. Are you eating enough? Enough fruit and veg? Good luck with it.
  3. svetoslav80

    svetoslav80 Senior Member

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    Thanks for answer and understanding. I'm eating relatively healthfully - fruits, vegetables , watching my food to include all vitamins. I guess I missed to explain that my condition, albeit not CFS is very similar to CFS (in my opinion), and I'm more prone to believe it is caused by a virus or immune overreaction or nerve damage or ... I don't know what ... you know, something that's not gonna cure by eating fruits and vegetables lol
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think there are different levels fo cfs. The first few years i could still exercise hard but my cfs was intermittent where i would feel 95% most of the time (and push through fatigue)and then get insomnia, aches and pains which would last several days then crash and sleep for several days. Then i would be at about 60% or so and slowly improve to 95% and crash, this went on for a few years until i was constantly knackered. My cfs did start with a trigger of several infections within 6 months from where i never got back to 100%. Now with antivirals and other treatments i have stabilized but variable condition i guess or maybe better to say i know i would be alot worse without treatments as without sleep meds i wouldnt sleep and be alot worse and i have also stopped antivirals and been alot worse for it. I cant really remember having PEM but just crashed regularly every few weeks, so probably didnt know i had PEM, maybe i had enough fitness not to notice PEM after a big day out.

    cheers!!!
  5. Valentijn

    Valentijn Activity Level: 3

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    M.E. involves a whole lot of bodily systems ... maybe your CF is just involving one or two, that result in some similar symptoms. The symptoms you mention sound like they could all be circulatory. Have you had your neurotransmitters, adrenals, and/or heart checked out?
  6. alex3619

    alex3619 Senior Member

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    Hi svetoslav80, in my early years my post exertional issues were subtle. Very rarely did I notice them. As time went on and I kept pushing myself, post exertional consequences kept getting worse. So I had some kind of chronic fatigue state with neurological symptoms, but until about twenty five years ago the post exertional issues were so mild that I would not have qualified for a diagnosis of ME under the ICC.

    There are also many people who develop post viral syndromes who do not get ME. Many of these people recover over time, but usually within two years. In some cases it takes five years.

    We don't know enough about how or why ME or similar disorders develop. In time we will, and in time we will have the tests to be able to accurately diagnose most of us. That time is not yet, although things are improving.

    I am not just here for those with PEM/PENE like I have now or other variants. I would like to see us all better, regardless of our eventual diagnosis. Many who have similar fatigue can go on to get ME, and I would like to know how to stop that from happening.

    Best wishes, Alex
  7. svetoslav80

    svetoslav80 Senior Member

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    Thanks for replies Alex and Valentijn

    Of course, heart and adrenals were one of the first things I checked. Besides the standard blood tests I did many other tests -heart, adrenals, lyme, thyroid, can't even remember all, which I paid by myself. My doc said I didn't have any of these conditions and I was angry at him at first for not giving me clinical path to do the tests but he eventually appeared to be right. About neurotransmitters I didn't check them, there are so many of them. To be honest I prefer believing my doc already - it seems he has experience and I think he would know if there was something wrong with my neurotransmitters. And I don't want to give any more money for useless tests. I have been on ssri-s though which are supposed to regulate my serotonin but I felt worse from them so I guess that's not the problem. Other than that I suffer a condition called Chronic Pelvic Pain Syndrome which is a form of prostatitis, and which, if we believe wikipedia, can lead to "unexplained fatigue" or even CFS. And that's what happened in my case - my fatigue started about 10 days after my pains appeared. That's my believe but I've spoken to other people who suffer CPPS and they don't have chronic fatigue. Otherwise my GP thinks it's just stress, anxiety, depression that's causing my symptoms.
  8. Esther12

    Esther12 Senior Member

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    Yeah - this is the danger of giving advice blind - I didn't mean to imply any trivialisation of your problems. I got on to a more generous level of disability benefits a couple of years ago that meant more money for food, and I think that being able to afford to eat four meals a day has been quite helpful for my fatigue (unfortunately, helpful enough to mean that I'm now likely to be returned to a lower income - curses!).

    So many different things can cause fatigue that I expect all of us are likely to find some different things helpful.
  9. svetoslav80

    svetoslav80 Senior Member

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    No, I don't believe in trying different meds without first getting diagnosis, especially ones which are still in clinical trial, and not proven to work. And even if I did, what's the price of Ampligen? This medication is not sold in Bulgaria. Delivering from somewhere else would be even more expensive and I just can't afford it. Other than that I read that it's administered intravenously and I have to search someone to make me injections - most doctors won't agree to put me a med that's not approved officialy.
  10. rwac

    rwac Senior Member

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    Have you tried the mitochondrial supplements like ALCAR, Creatine, PQQ, and a good b-complex?
  11. svetoslav80

    svetoslav80 Senior Member

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    Only b-complex, without effect, Creatine looks like a good idea, maybe more for my cognitive issues than for mitochondia. Haven't heard of the other 2 supplement, thanks for the ideas maybe I'll give them a try.
  12. caledonia

    caledonia

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    Your description makes me think of three things. One is overtraining syndrome. Or your constant fatigue could be a state a PEM. Have you tried not exercising for say, a month, and see if things improve?

    The other thing is a story told to me by a former co-worker. He had a friend who was constantly fatigued. It turns out he had a rare, hard-to-detect infection, I believe it was in his prostate. Once he got on the right antibiotics, he was back to normal.

    One more thought is to treat the gut. If your gut is not working properly you may not be absorbing the nutrients. So that would mean things like probiotics, digestive enzymes, betaine hydrochloride. Also going gluten free and dairy free for several months and see if anything improves.
  13. svetoslav80

    svetoslav80 Senior Member

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    No I'm not that overtrained , I train normally. Also CPPS is something which is not treated with antibiotics, though I've made courses with some- Zinnate (1 week), Doxycycline (2 weeks), Ciprofloxacin(2 weeks). I've taken probiotics and digestive enzimes too. I also have made a 5 day water fast, which in my opinion is the best treatment for any gut/stomach issues.

    Thanks all for your ideas. I really don't expect someone to get me diagnosed here or to find treatment for me, but just wanted to explain my condition.
  14. November Girl

    November Girl Senior Member

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    It's so frustrating not to know what's wrong with our bodies. The CoQ10 is a big help for me.

    Years ago, I had a persistent flu. I would get better, then go to class or work, and be wiped out again. A nurse friend told me that it was a particularly nasty flu going around and that I needed to totally rest an extra day after I felt better. I did that and it finally went away.

    I know how much better our muscles feel when we can exercise, but wonder if this level of exercise is helping you. Could you be training at a good rate for a healthier person, but not one with your disease? (whatever your disease turns out to be) You may not have the problem of hitting your Vo2 max after a few minutes, but could still be overdoing your energy profile. For all I know, this could be one subset of CFS/ME, just as those with no aches and pains are a subset. Do you think a couple of weeks of just stretching, with no overt exercise would be worth a try?
  15. svetoslav80

    svetoslav80 Senior Member

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    I already said in my previous post. I'm not overtraining, I'm just training. And there have been months in which I don't train at all. I wish it was something trivial like this, to be able to cure by rest, or diet, but it isn't. CoQ10 is one of the things I'm thinking to try. Folic acid and B12 didn't work for me.
  16. November Girl

    November Girl Senior Member

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    I didn't realize there were months that you didn't train. That of course makes a difference. B-complex helps a lot of people - I think it's 100 mg of several different B vitamins. This is for people with fatigue, not just CFS/ME. I find that potassium keeps the palpitations away for me. I also take a lot of magnesium, which may have something to do with controlling the palpitations. Have you considered MCS or some kind of toxic overload or chemical poisoning? That would cause the symptoms you're having.
  17. November Girl

    November Girl Senior Member

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    I just ran across this in a CFIDS Chronicle article article from fall 2000

    "Our own research has shown significantly lower exercise duration and peak oxygen consumption in a subset of CFS patients positive for the RNase L enzyme compared to CFS patients negative for the enzyme.2 Presence of the RNase L enzyme is believed to be connected to an immune system dysfunction that may interrupt energy production, reducing aerobic work capacity.3"

    I think that most PWME test positive for RNase L, but not all of them do.

    I know this isn't any practical help at the moment, but hope it might help you figure out what's going on. Others on the forum know a lot more about the biology of ME/CFS than I do.
  18. rwac

    rwac Senior Member

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  19. searcher

    searcher

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    I don't have much to add except to say that I am in the same situation. I don't have obvious PEM after physical activity, but feel hung-over and exhausted 100% of the time. I do get really bad PEM after almost any mental activity. I haven't found anything that makes me feel much better, but high-dose methyl-B12 has helped some. I am going to see an expert in CFS soon; I am curious if he will consider me to have CFS or whether there are other potential diagnoses.
  20. taniaaust1

    taniaaust1 Senior Member

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    Just cause one dont have ME, it doesnt mean they have a psychological issue causing their problem.. all it means is that their medical problem hasnt been worked out yet, right tests not done, they may have a not good doctor etc. Some may have psych issues while others have rarer problems and hence harder to figure out illnesses.
    I think it is a breakthrou thing to realise that your illness is appearing to be different, so you can keep seeking to find out what it is. Keep looking till a good fit for the illness is found.

    ME I dont think should be ruled out either.. unless an actual test is found to distingish it. I think you should maintain an open mind as your illness could change.

    I didnt have postexertional fatigue at all with exercise for the first 9mths of my illness. I'd just crash if I had a late night and didnt sleep.. or crash while trying to study for exams (it was mental things not physical which crashed me early in this illness, crashing to exercise came later in my illness).

    My sisters husbands brother developed what appeared to be CFS. He's all better now, the doctors were wrong, it turned out to be food intollerances the whole cause of his various symptoms. Take care your issue isnt food related in some way. (food issues can give people all kinds of symptoms eg milk can give me a headache and sore throat but dont give me bowel symptoms).

    My hyperinsulinemia gives me sore throats, lethargy, hard to get out of bed in the morning and mood swings when I have carbs. Your issue could be something like a little tested for condition such as that causing uncommon symptoms.

    If you havent done already I suggest to get a copy of all your medical tests done so far.. as doctors will often dismiss test abnormalities if they dont think them important or dont know what they could mean but these could give you important clues on what may be wrong. eg my blood sugar was so low that it was twice at levels in which could cause unconciousness or near unconsciousness in some (no wonder I'd been stuck in bed at the time).. I had a doctor who ignored that abnormal test result as she didnt know it was dangerous being that low, I only found out 3 years later when I asked for copy of test results. That would of been causing me a heap of symptoms at the time.

    Also look into if your symptoms could be just being caused by something such a POTS. POTS can cause MANY different symptoms and people can have it without having CFS. The tricky thing about POTS is that POTS may not appear to kick in if one is moving about eg some may not get it when exercising (thou its usually noticable with heat and standing). http://www.dinet.org/symptoms.htm

    Trying different treatments thou you dont know what you have.. can be helpful as if you try something and it helps.. it can give clues to what your issue may be.

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