PEM vs Crashing in Chronic Fatigue Syndrome (ME/CFS) and/or Fibromyalgia

Discussion in 'Symptoms' started by San Diego, Feb 24, 2016.

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Post Exertional Malaise vs Crashing vs Relapse: What Do You Experience?

  1. I experience crashes that occur suddenly which then get better over time

    9 vote(s)
    15.5%
  2. I experience PEM: after excess activity my symptoms worsen first and then wane

    28 vote(s)
    48.3%
  3. I experience both crashes and PEM; I suddenly crash and then get worse over time before I get better

    37 vote(s)
    63.8%
  4. Relapse - I have experienced relapses - sudden crashes which causes symptoms that last a long time

    30 vote(s)
    51.7%
Multiple votes are allowed.
  1. Judi

    Judi Member

    Cort your guess is what I would guess too or do we need to look at co infections when the immune system is askew?
     
  2. IrisRV

    IrisRV Well-Known Member

    According to whom? The vast majority of doctors use rules of thumb for healthy people when evaluating the results of these tests. You need someone who understands how to evaluate the results in the context of ME/CFS.

    That was exactly my experience until I get long-term antivirals from Dr Lerner. All that went away. I still get PEM, but I don't have that fluish feeling or the cycling, or the inexplicable relapses. My condition is much, much more stable.

    I'm not saying AVs will work for everyone, just that they're something to consider with those kinds of symptoms.
     
  3. Denise Jasak

    Denise Jasak Member

    Would you mind telling me which anti virals worked for you? I have been taking natural anti virals, no more flu symptoms, but still relapsing. Also, two internists read my results and said I have antibodies for EBV and HHV 6 past infection, but not an acute infection.
     
  4. IrisRV

    IrisRV Well-Known Member

    The one that did the most for me was Valcyte long-term, as in years. I've also taken Valtrex, theoretically to keep HHV6 suppressed once it was knocked back and to keep EBV under control.

    Sheesh, doctors! Of course you don't have an acute infection. :rolleyes: You likely had the acute infections either in early childhood and almost certainly before you were 20yo. The question is whether you have a reactivation. I'll bet both internists were using the healthy person rule-of-thumb that says high IgG only means a past infection. Not strictly true. If you are healthy, no symptoms, no immune dysfunction, and had the initial infection in the last 10 years, then high titres probably aren't important. However, if you have symptoms, have immune dysfunction (many/most PWME do), and are decades past your original infections, then high titres could be significant. They don't look at the details, just the simplest explanation, whether it fits your situation or not.

    Internists told me for years my high titres didn't mean anything... and I stayed sick. Dr Lerner (an ME/CFS specialist and infectious disease doc) said my high titres were significant and treated me with Valcyte. My condition improved dramatically. If I stay off AVs more than a couple of years, I get symptoms again and my titres start climbing. Those are pretty clear signs that my body is trying to fight these herpesviruses and not always succeeding.

    You might also want to consider that CMV is another herpesvirus that is frequently reactivated in PWME. It might be worth having that tested as well.

    If you might have herpesviral activations, it's worth getting evaluated by an ME/CFS specialist who is willing to use AVs when warranted. I'm not sure who they all are, but the docs at INIM, Stanford, and OMI use AVs. Dr Petersen also does, but it's nearly impossible to get to see him. There might be others.
     
  5. Denise Jasak

    Denise Jasak Member

    Thanks for your post Iris..I said acute infection, but I actually meant "Activation" of a virus. I was on Valcyte years back, and I do believe it helped ..while I never had particularly good results using Valtrex, maybe a trial of an anti viral wouldn't hurt. I continue to have relapsing fatigue and can't seem to get to the bottom of it. Then again, maybe just the cycle I'm in, and have to wait it out. Specialists are hard to come by these days. They are far and few In between.
     
    Last edited: Mar 23, 2016
    IrisRV likes this.
  6. Sue Stevenson

    Sue Stevenson Active Member

    Gotta get me some of that Valcyte. That would involve a visit to the doctor though, and the thought traumatises.

    I do wonder how effective neem tea is as an antiviral. When I was in my remitted stage where I delusionally thought I was recovered, I was working 20 hours a week (and dying the rest of the time). Every single day at work I'd drink a cup of neem tea. I know it's pretty powerful stuff, there's been lots of studies done on its effectiveness. I've started back on it again recently, a cup a day. Be so nice if it alone would remit my reinfections or whatever the hell is going on.

    Re crashes and PEM, I've always called a relapse a crash. And what San Diego calls a crash feels to me like some combo of OI and hypoglycemia. They happen though when I've eaten recently and they feel slightly different to hypos. I've been having them a bit lately. I had one a few weekends ago while I was socialising at my parents' place with my mum, auntie and cousin. We were having a great time and I was enjoying being around a bunch of women (doesn't happen much) and was running happily on adrenaline. Then I felt it, the gradual slide-down in my chair, starting to feel anxious and then feeling panicky, going to the toilet and crying, and then finally NEEDING to go lie on the couch in the other room for 20 minutes. It was really embarrassing. It's kind of like wetting your pants, but different.

    I had another one a few days ago where I just simply could not all of a sudden go down the four split-level stairs from the kitchen to the lounge room, and so I had to instead lie on the (cold tiled) floor for 15 minutes. Which was really quite irritating. I lay there and felt alone and anxious and wishing I was dead and all of those things that I'm trying to stop thinking when I feel like that. What does Buddhism say? Something about suffering twice - once when whatever it is happens, and then secondly by the story you're telling yourself?

    These situations are so bizarre. My brain function is pretty good these days when I'm not fuzzy and tuned out. I go and lie on the couch after feeling I was going to die and then 20 minutes later I'm thinking and daydreaming about politics and philosophy and all of these super deep things. It's this weird twilight world where upright my IQ is -7 and lying down I'm feeling like suddenly the world opens up.

    THIS ILLNESS IS JUST BLOODY WEIRD AND STUPID AND IT SMELLS LIKE POO.
     
    Last edited: May 17, 2016
  7. Remy

    Remy Administrator

    Here I am, seeing mast cell activation disease in everyone again, but that sure as heck sounds like a textbook case!

    Did you happen to see this thread on mast cell disease?
     
    Sue Stevenson likes this.
  8. Sue Stevenson

    Sue Stevenson Active Member

    Oh, that's interesting you say that, @Remy because I was just looking at the whole mast cell activation thing recently and concluded that it didn't apply to me because I dont *seem* to have histamine-related issues. Thanks for the link, I'll check it out.
     
    Remy likes this.
  9. Sue Stevenson

    Sue Stevenson Active Member

    Remy, thanks so much for suggesting my issues might be mast cell related. Now that I've turned my attention to these symptoms, I realise that I itch a lot, I have 9ccasional rashes, that i often have swollen lips and tongue.

    I would feel embarrassed saying this to non-CFS people. They would say how on earth could I not notice those sorts of symptoms before? I've done this countless times before. My CFS specialist Don Lewis pointed out long time ago that this odd propensity to find it difficult to recognise our own symptoms are autonomic nervous system dysfunction.

    Which makes sense. It never stops feeling odd though.

    So thanks for your comment. I may have gone on for more months not being able to see that this appears to be a big thing for me.
     
    Remy and Lissa like this.
  10. J.A.

    J.A. Member

    Can I ask what OI meds you use & what OI techniques?
     
  11. ShyestofFlies

    ShyestofFlies Well-Known Member

    I don't think I actually have PEM on an acute level, more that I have a constant layer of PEM at all times. It isn't always as severe as others, but just a general feeling of malaise/sick/gross/unwell. Being awake/breathing may be the trigger (joke)

    Think of this as a pyramid/mountain diagram:
    CRASHES
    Layer of post exertional malaise/whatever you wanna call it
    Layer of base ME/CFS illness
    Base with other illnesses (autoimmune, etc)
    Base wellness

    It's worth noting I haven't had ME/CFS all that long, in comparison to many here and elsewhere.

    In one group I was told the second year tends to be the worst for some reasons for a noticeable subset.

    Well part of my second year of illness was needing part time care, so so-far that seems in line.

    As for crashes, I notice they typically are unavoidable forced rests, not by choice. My body calls the shots and I either settle down (if I can move at all) or I will collapse. I've had partial paralysis during a crash before- if someone had been with me at the time I might be able to report speach problems, etc but I was alone.

    It was terrifying at the time, but I find this part funny: I threw myself off the sofa with a roll so as not to pee on it. Once I was on the floor I waited a bit and was abel to move again. The whole ordeal I was in and out of consciousness but mostly out. It definately had a "crash-hangover" of sorts, but was thankful a very short crash, perhaps around 6 hours.

    Crash symptoms for me typically include:
    Accute muscle weakness, lack of fine motor control, no energy, dizzy, "don't get up!!!", horrible pain, extreme sensitivity to noise and light, palpitations, nausea, and severe debilitating exhaustion and definitive sleepiness, grogginess, cognitive issues.

    The partial paralysis (which I am not 100% sure it was, or if I was so weak it just felt that way) hasn't occured again.

    I try not to push through weakness episodes in muscle groups now.
     
    IrisRV likes this.
  12. Farmgirl

    Farmgirl Well-Known Member

    @San Diego, you are so brave and worse than me. Zofran is a good friend to me lately.. Farmgirl
     
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