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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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How long do your PEM setbacks last?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Aerose91, Nov 3, 2013.

  1. Aerose91

    Aerose91 Senior Member

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    I'm very curious to know because I feel like I'm on an island of my own here. Here's why; if I overexert it takes about 3-4 days for the "malaise" to start, but once it does, the effects are permenant. I have never once recovered even 1% from the changes in my brain after a period of PEM.

    Fatigue is not a big issue for me. It's massive, massive dissociation, memory loss, complete emptiness and silence in my brain and complete apathy and anhedonia don't even touch describing how little I can feel. There's just soooo much missing in my brain and experience of the world. I can't even describe how much is missing

    If I overexert the effects always happen while I'm sleeping. I will get woken up with a feeling of being "revved up"; intense nerve and muscle weakness and burning, sweating, intense cold, joint pain, pounding heart, pupils dilated as hell and the coup de gras- my brain will pull back further. As in, I will feel more emptiness and hollowness and dissociation.

    After a whole night of this usually the physical symptoms will calm down a bit and then mostly wear off in about a week, but I'm always left with some deficit. My brain, however, will not recover..... at all. I've been sick with this for 8 months now and it's like I have an entirely new disease from what I started with because of the effects of PEM on my brain. In 8 months I haven't recovered even 1% brain function from any setback I've had thus far.

    Honestly? If I could actually feel the real world I would probably be going into insanity at how bad I am but somehow I'm holding it together. I'm curious, has anyone who has had setbacks from overexertion spiral downward and have the effects be seemingly permenant?
  2. alex3619

    alex3619 Senior Member

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    Short answer to your question: Yes.

    Long answer: It depends. In the early days PEM used to hit within a day and last for more than two weeks. I never knew how long it lasted as by the end of the two weeks I had done something to crash me for another two weeks - something crazy like buying groceries.

    These days PEM usually lasts only a day or two, and sometimes I don't notice PEM any more.

    However cogntive changes have been long term ... its not permanent I think, its just over such a duration that we don't always see improvement, and during that time if we overexert again we reinforce it.

    I have also had physical changes that were seemingly permanent. For fifteen years after a year of physiotherapy (bad idea for me), changes in diet etc.I was in constant pain, primarily muscle pain. However after some years of trying various things including pacing this started to fade away. Now, 8 years later, my pain levels are so low that sometimes I don't even notice the pain even if I am looking to see if I am in pain. That's progress.

    There is always the question of diagnosis, but I think that very little can be considered permanent in ME, its just the time needed for recovery or improvement is so long, and sometimes we get worse for some time rather than improve. Its not a very predictable illness in the long term, or the short term for that matter.

    I went into hospital for two months early this year, and my brain has not recovered aside from a brief bout of slight improvement that then went away. Yet I know it can recover, the trick is learning how to make that happen. Its not easy.

    Good luck.
  3. Aerose91

    Aerose91 Senior Member

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    Alex

    Wow, you've been sick for over 15 years with this? How awful. How much are you able to do these days?

    I'm still a bit confused on what I read on hfme.org. What it seems from there is that if you have actual M.E. then there's no chance of full recovery or even mostly recovered but if you have a various type of post viral syndrome then most everyone eventually recovers. I'm pretty concerned that I'm in the former because my push hologram issues never fluctuate at all and have been "permenantly" regressed due to overexertion.
  4. Aerose91

    Aerose91 Senior Member

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    *psychological issues
  5. alex3619

    alex3619 Senior Member

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    Ummm, I was diagnosed 25 years ago, was sick for some time prior to that. I might have been sick for 45 years, but it was mild in the early years and probably a result of viral encephalitis.

    On the order of 90% of people with post viral fatigue fully recover, and most of that is in six months to a year, but a few require up to five years.

    The evidence on ME is that, depending on what you read, about 10% mostly recover, but nobody fully recovers. However many of the remainder improve, and some improve a lot. Sadly some get worse.

    I am almost fully housebound but not bedbound. However I can participate in the online community most days, and sometimes for many hours if spaced out over a whole day.

    Long term failure to improve for a time in ME is not uncommon. I know a few people who relapsed and couldn't get out of bed for a year, but who are now walking around ... not fully recovered, but at least not bound to the bed. I also know of case histories of patients who were sick for decades only to suddenly recover. Another lady I know of (I speak to her carer) was very sick and bedbound, but can now go out of the house if she doesn't push too hard. That's progress.

    A percentage of us are misdiagnosed of course. In which case the prognosis really depends on what is wrong with them, not a diagnosis of ME or post viral fatigue.

    One thing I would suggest talking about with your doctor, or a cardiologist, is having a tilt table test. If you problems are related to orthostatic intolerance (an inability to adjust blood flow to the brain when standing for example) then treatments are available.
  6. Mesurfer

    Mesurfer

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    My longest set backs ( in bed almost all day every day) usually last just under 4 weeks.
  7. ukxmrv

    ukxmrv Senior Member

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    I've done 2 exercise programs and after each of these I deteriorated to a level that was lower than when I started. Dr Ramsay wrote about people with ME and exercise that if they persist in the exertion then the post exertional symptoms would get worse and worse - which is what happened to me during both exercise programs.

    After the first (and worst) program I was still not back to my previous level of physical functioning 10 years later. My brain symptoms I am less clear on. My pre-ME brain still hasn't returned and it is nearly 30 years for me.

    I noticed that the brain symptoms of PEM now outlast the physical ones. Not sure if this was always the case. After an unplanned emergency caused some extreme exertion for me about 6 weeks ago the physical symptoms began to improve before the brain ones. I took a note each day of how long each type of symptom took to set in and to resolve. I'm still not back to the level I was then.

    There is a difference for me in one episode of exertion compared to a big exertion, like a long walk compared to going to a wedding. The recovery period of the the former can take months and the later years.
    Last edited: Nov 4, 2013
  8. Plum

    Plum Senior Member

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    I try not to exert myself anymore. If I have to do something - like go to a hospital appointment I will rest a day or 2 before hand, limit what travelling I have to do myself, and then rest up after. I can feel if I need more then a few days rest and take it.

    I also work hard on eating properly, taking food with me, taking time to relax etc.

    I used to push myself and it used to result in bad crashes lasting 6 to 8 weeks. I'm talking bed ridden 23.5hrs a day, dizzy all the time, nausea, brain fog etc etc all way worse than normal. Now, I just don't do those things.

    I have been working hard on not having any crashes. I need stability and right now that fluctuates between 10 and 20% functioning.

    I had a random bad day recently when I woke up and just felt rough so I did nothing all day. The following day was better. It's hard but I think I'm starting to learn to listen better to myself and stop thinking I'm normal!
  9. Aerose91

    Aerose91 Senior Member

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    Thanks for the replies. Mine also started with what was almost definately viral encephalitis.

    I stay in bed basically 20 hours a day now simply because of my brain symptoms- the fatigue isn't too bad. If I have to do any exertion, like going to the doctor, I am extra careful for several days before and after. However, I have not recovered at all from any of my overexertion episodes and I continue to get worse regularly- even just laying down all day. In 8 months since onset I have just deteriorated and mind u my diet is perfect along with having done an immune system boosting protocol the whole time.

    I have done a tilt table test and I have slight OI, not terrible. I have POTS sometimes, not all the time. However my brain symptoms are constant- they don't fluctuate based on activity level or anything- they just slowly get worse and that's it, never better.

    I see Dr Enlander in NYC and he has diagnosed me with "CFS/Fibromyalgia" but to be honest that diagnoses kinda pisses me off. My brain symptoms are MUCH worse than anything described by CFS and pain is not a principal symptom of mine either (it happens transiently).

    I've also had a SPECT scan which showed major hypo perfusion to several areas of my brain- the doctor who read it told me that mine is not a CFS pattern but much worse.

    Dr Enlander subscribes to the theory that CFS and ME are the same thing but I'm not sure I agree after what I've seen/read. How would I go about getting a definitive diagnosis for ME? I'm really desperate here and can't imagine having to live the rest of my life like this.

    Thank you guys for all the help
  10. Aerose91

    Aerose91 Senior Member

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    For the people who regressed at first and have since made recovery- what worked for them? Is there any way of knowing? I feel like Im already doing all the protocols possible and nothing is working.

    And do I assume that the people who are the most recovered are the ones who didn't have any major setbacks from overexertion in the beginning? But rather was stable and improved from the get go?
  11. alex3619

    alex3619 Senior Member

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    I don't think we know the answer to that. However I have read from several clinicians over the years that from their experience it is patients who pace from the beginning who have the best response.
    SOC likes this.
  12. Aerose91

    Aerose91 Senior Member

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    Alex

    Are you, or I guess I should ask if most of this forum, is under the belief that "real" M.E. is caused by an enterovirus and can not be caused by HHV-6 or any other virus? Herpes or otherwise?
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I very much doubt that most here would say that.

    Sushi
    Little Bluestem, Valentijn and SOC like this.
  14. alex3619

    alex3619 Senior Member

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    No. The enterovirus hypothesis is one I like, but its only an hypothesis at this point. It is perhaps the leading hypothesis, but its certainly not the only one.

    Its the high prevalence, the discovery of new viral lifecycles, and the pervasiveness of this virus in tissue to ME patients that makes the hypothesis appealing. If you get another infection and you have an existing enteroviral presence (which I think even most children have) then it can replicate. Each time you get an infection or injury this can happen. At some point it will have widespread presence in gut tissue, and the gut will be compromised. That is my suspicion, but only a suspicion, of when enterviral infection can become ME. The liver will become overwhelmed, the immune system altered, and the brain will be impacted by both these things.

    However, herpes viruses have similar lifecycle issues, and spread in the same circumstances, and may be even more prevalent. For all I know it takes both a herpes virus and an enterovirus to cause ME.

    Then there is the mitochondrial damage hypothesis. Many factors, including antibiotics, damage the mitochondria in the modern world.

    Then there is the mold hypothesis ... most of us test positive for mold toxins.

    Then there are autoimmune and autoinflammatory hypotheses.

    How about the methylation hypothesis?

    Then there are neurological hypotheses, with both central and peripheral versions of those.

    Then there is the chance of a novel pathogen, or specific types of gut dysbiosis, etc.

    I have probably left a few out. I am deliberately leaving out psychogenic hypotheses. There is zero objective evidence of any of those.

    Many do think there are genetic predispositions though. There also seems to be links to several known genetic disorders which seem to predispose to something like ME.
  15. Aerose91

    Aerose91 Senior Member

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    Damn

    So then I guess it's not as important as I thought to really dial in the exact virus since most of us have multiple viruses and there's no way of really knowing which is causing what symptoms or how they interact with each other? It seems like there are too many variables.

    Maybe that leads to part of the problem with this disease then? There's no sure fire way to treat it since there's no definitive knowledge of what the exact cause is or why our bodies react this way and others don't. I wonder if getting a genetic test would be telling of anything.... I'm just trying to scheme up some way to find something wrong that can be correctable with time and maybe reverse this insidious disease
  16. ukxmrv

    ukxmrv Senior Member

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    Dr Ramsay (who investigated ME at the Royal Free outbreak) said that the patients who rested at the stage of their illness had the best prognosis. Sadly, that's not much good to those of us who didn't get such good advice. Resting is one of the best treatments I have ever done though still.
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  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Can you get an appointment with the doctor who read the SPECT scan and find out what kind of pattern he thinks yours is?
    justy likes this.
  18. Aerose91

    Aerose91 Senior Member

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    He said it looked like mitochondrial disease, which I guess would fall in line with M.E. Especially since mine started with what was most likely encephalitis. From what he said CFS as they see it has a different pattern, mine was much more pronounced.

    Ukxmrv- yes if only I had known to rest more at the beginning of this. However I didn't think it was necessary because of my lack of fatigue but I'm paying or it now. I even asked Dr Enlander if my overexertion in the beginning would make my ultimate recovery harder and he said no it would have no influence. I can see where a lot of these "specialists" differ on their approach.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think it is important to find out which viruses you have as different viruses need different drugs. While treating viruses may not cure us (or it may!), many here have had a lot of improvement from taking drugs that matched the viruses they actually have.

    Sushi
  20. Aerose91

    Aerose91 Senior Member

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    Is this what you have done? Like I said I'm seeing DR enlander but I hear about so many other tests from so many people and specific labs needed in irder to get an accurate reading etc..

    I'm considering trying to see DR Chia to get tested for enteroviruses but after that I'm not sure what else to pursue. Do I just assume that DR enlander did all the right tests and all my other bases are covered?

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