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The only disease with PEM?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Samuel, Dec 3, 2009.

  1. spit

    spit Senior Member

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    My personal take, just an opinion, is that PEM is not unique to CFS at all -- I think that an exacerbation of symptoms from even mild exercise, complete with extreme fatigue and pain and a whole host of things, is something I've seen personally in plenty of folks with other diseases. I mean, I suppose it depends on how you define PEM, but I'm still really doubtful that you wouldn't find any other disease with a similar reaction to exertion.

    But I do think that PEM is important to differentiate depression from other sources of fatigue, personally. When people are depressed, activity generally helps boost mood and energy level -- it's hard to get motivated, but once you're exercising a little, you generally feel a bit better. Doctors very much encourage people coping with mild depression to try to get engaged in physical activities as much as they can, at least in my experience.

    It's been my tactic for low energy/moodiness for most of my life, but when I got sick, one of the early things I noticed was that mild exercise never, never started feeling better. A half hour into any physical activity, even just a walk, and even if I was enjoying myself, I'd feel physically terrible. The next day I would feel utterly exhausted from the effort. I wasn't having trouble with motivation, and I was even enjoying the activity; my body couldn't physically deal with the exertion for long. That, to me, is a very, very clear difference from any depression I've ever known about.
  2. Mithriel

    Mithriel Senior Member

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    I think what you describe is common in the illness and is definitely different from depression. I get the sort of weakness and exacerbation of symptoms you mention but there is a direct connection with exercise in ME which is very hard to describe.

    In fact, this problem of finding ways to describe it is one of the reasons I think it is unique to ME. I talk with people with MS and other things and they talk about fatigue and feeling bad after exercise but it is different in a way I find difficult to describe and which they don't comprehend.

    Mental effort can make my legs give way when I try to stand. I don't feel fatigued or ill, my legs just don't work. Conversely, an amount of walking which didn't leave me out of breath or tired would make me so confused I couldn't get home, or it could affect my vision or balance.

    I also get what I think of as "three strikes and you're out". I can't repeat actions. Once to take the spoon to my mouth, then again, fine, third time it drops.

    These discussions are useful as we need to develop a vocabulary to talk about our symptoms and to clarify what we mean. :)

    Mithriel
  3. spit

    spit Senior Member

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    It is really hard to describe some of these things; I joke sometimes that I'm going to just have to invent words for all of the different kinds of tiredness I experience, because they're totally different from each other. Instead of telling my partner, "today, I'm super tired in this totally physically drained, limp way -- no, not like yesterday, that was mental exhaustion where I couldn't think to form a sentence," I could just say something like, "Today, I am squooged. Whereas yesterday, I was feeling mushly."

    I also, to be clear, don't have a diagnosis of CFS, so it's also quite possible that the kind of feelings I get after exertion are fundamentally different. I will say, though, that there is more to it than exhaustion -- it's a... hm. Squoogy mushliness, or something.

    The language is just lacking, yes.
  4. Michael Dessin

    Michael Dessin Senior Member

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    Wow

    I get the chills reading some of these posts.

    It is sooo difficult to explain our symptoms...but you can read through this thread and hear us trying to get the words out, what it feels like to live with this.

    You can't tell a friend, family member or anyone else what this feels like because they would NEVER be able to relate. EVEN MOST DOCTORS..(UGH)

    When I hear the comments on these threads, I just say to myself YES! YES! YES! over and over again.

    Many of us live for many years with this disease, virtually keeping this a secret from everyone we know, until many of us get too disabled to keep it a secret any longer.

    These symptoms are distinct to ME sufferers with some overlap of symptomolgy in other horrible condtions, so why do we still get so much ridicule as many of us continue to suffer with very little being done.

    Mike
  5. Mithriel

    Mithriel Senior Member

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    Mike, you are so right.

    It was so difficult to explain that I hid it from people for years, even my best friend who saw me every day did not know how bad I was because the worst of it comes in the evening.

    Even my mother, who knew I was ill, panicked when she stayed with us and saw what I was like going to bed - crawling up the stairs with my eyelids firmly spasmed shut, unable to talk.

    You know, I typed that last paragraph, the truth, then thought I should delete it because it sounds like I am exaggerating or looking for sympathy or being a pathetic.

    I live it but even I think it is too weird to be true!

    I've had another thought on describing PEM in ME. To feel achey and sore after exercising is NORMAL. To feel weak and exhausted after exercise when you have the flu or heart disease or something else is NORMAL and it is no surprise that it happens in CFS as well.

    But what is different in ME is an ABNORMAL response to exercise. That was the defining characteristic for people like Dr Ramsay who were the first experts.

    It is abnormal because it is out of proportion to the effort expended and much more than would be expected in the circumstances - I mean nothing that would explain it internally, like a bad heart or externally like high altitude. (Maybe something like XMRV in mitochondria will explain it soon. This is the point where research would be most useful.)

    It is abnormal because it is exceptionally prolonged. Even people who get exhausted easily because of other illnesses recover to baseline much faster than people with ME where it can take months or longer.

    It is abnormal because the consequences of exercise can be delayed for up to three days.

    It is abnormal simply because it leads to consequences not usually seen as the result of too much effort. Walk too much get swollen glands, or confusion or headache or double vision.

    Finally, it is abnormal because the symptoms of the disease only happen as a result of exercise. People can go along in seeming good health until they cross an invisible line and they are floored. Many studies have not shown abnormalities because they look at rested patients. The difference between PWCs at rest and after exercise are much more than for normal people.

    Still struggling to make all this coherent,

    Mithriel
  6. Michael Dessin

    Michael Dessin Senior Member

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    Mithriel

    I think you do a very good job of explaining PEM and other aspects of living with this disease.

    The way I usually describe PEM, is a feeling of getting no oxygen to the brain, which is a result of what you described, per Hydes description as well.

    On any given day the exertion threshold can be different. Somedays a walk seems impossiible to many, on other days a walk is not out of the question.

    For others, simply getting out of bed is impossible.

    One of the emost confusing aspects of this disease, is that we are all in different phases. Most likley someone who is in the early years of the illness could not relate to someone in the later stages. Not true in every single case, but in general the symptomolgy increases with length of disease.

    Thats why many folks say there is no way they can have this when they do. There simply at a different stage.

    Lack of published research is the main cause of this confusion.

    Our disease process is similar to diseases such as MS, Parkinsons..e.t.c.

    It's almost always progressing in some manner, however it can be remittent, mild or very progressive at a certain point.

    It's not clear cut like the other diseases where there is universal tests for.

    So it's almost a guessing game, with lots of research by the patient as too what they have. Many feel elated too find they don't have MS or so on.

    They only feel this way becasue they don't understand that in the long run, this is one of the most devestating disease on the planet. :mad:

    Mike
  7. fresh_eyes

    fresh_eyes happy to be here

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    Love this. Like the Eskimos with all their words for snow.
  8. gracenote

    gracenote All shall be well . . .

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    PEM is abnormal because . . .

    Thanks for not deleting, Mithriel. I think we all feel this when we try to describe our symptoms. I think that's why we often don't. Sometimes I think that if even I can't understand my own weird symptoms, no wonder no one else can.

    I like how you were describing that PEM is abnormal because . . .

    Right now I'm in a phase where I'm feeling more like I have the flu and am very tired. I know that whatever I do will make me feel worse. This seems more like "normal" people when they are sick.

    But PEM stands out for me when I'm having those lovely, surprising days when I'm not feeling so "sick," still knowing I'm not well, and still trying to live within my "energy envelop," even doing "less than" I know I am capable of at that moment. I will do something that doesn't feel like "too much," or "pushing." I'm doing what feels comfortable and what feels like a "healthy" level of activity. The crash that comes after these times is what continues to surprise me. They just don't make sense. To me that is what PEM is and that seems different from other diseases. Some days (not enough days) my body just feels sort of healthy and whole and then . . . wham.
  9. xlynx

    xlynx Senior Member

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    What an interest discussion, I wish I found this forum sooner!

    I find my PEM is between 5 hours and 3 days and wipes me out between 3 days to 2 weeks.

    My father has ME and peripheral neuropathy and he has something very strange he gets a form of PEM for energy after 3 days and then normally 4 weeks after he loses feeling in his arms and legs and neck but he has energy.

    I hope that was clear what I am trying to say is he gets different symptoms of PEM at different times.

    So if he works hard in the garden he will get within 3 days energy crisis and general me probs. But on top of that within 4 weeks come his neurological symptoms. He only knows this after about 10 years of messing about logging. So I dont know if this is true for anyone else with ME but some of his PEM symptoms have a different time scale for activating.
  10. _Kim_

    _Kim_ Guest

    Hi xlynx

    So, you and your father both have ME? So sorry.

    I'm glad you found your way to these forums, too. Welcome.
  11. kat0465

    kat0465 Senior Member

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    i hav a good friend with Mayasthenia gravis, and he has bad PEM, i would imagine anyone with an autoimmune aspect to thier disease sufferes trememdously with that complication.
  12. Mithriel

    Mithriel Senior Member

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    I have been thinking about this but I don't think it is the same. As I said before post exertional malaise is a bad name for what you get in ME. It would be good if our resources on this forum could come up with something more accurate.

    I have never known anyone with Myasthenia gravis well so I could be wrong about that particular illness. I do know people with other illnesses and they do have what is best described as a post exertional malaise, even exercise induced exacerbations.

    My mother had COPD and could only go a few steps in the outdoors before she could hardly get a breath.

    A close friend had exercise induced asthma and just like in ME and CFS she did not know she had done too much until the next day or the next.

    In ME, the response to exercise is ABNORMAL. The above effects are a NORMAL response to exercise in damaged bodies.

    I get these effects too, but there are also other things which are hard to find the words to describe and are never mentioned by people with other diseases.


    I can be walking and moving fine, keeping well within my limits, then I try to add up some figures in my head and my legs give way.

    Another example. I sometimes go to see a friend. I get taken by car and just have to walk to her door. It is tiring and I often have to go to bed afterwards and even then I feel worse the next day. Typical ME or CFS symptoms.

    Once, I took a pair of wireless headphones to let her husband try them. I fiddled with the tuning but it wouldn't work until he realized the unit wasn't switched on, then I got it to tune in.

    Now, I had twiddled the control at my ear for a minute or so, so a normal reaction in our damaged bodies would have been for my fingers and arm to hurt, maybe even to be exhausted for a bit, but instead I froze completely. I literally couldn't move a muscle or talk. I was in there but unable to respond. That is not a normal reaction and is totally out of proportion to the effort I had expended which didn't even tire me.

    I think it was because the movement, while small, was sustained. Like many of us I can do most things once, maybe twice but no more.

    Mithriel
  13. Advocate

    Advocate Senior Member

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    I think of people with ME as having damaged bodies also, and the sometimes severe, multi-system negative response to exercise or mere exertion of any kind is normal for their damaged bodies.

    I agree that "malaise" is a terribly inaccurate word to describe what happens.
  14. Denn

    Denn Guest

    All: this has been such a great thread and there are so many posts that resonate with me. PEM has been a defining characteristic for me as it allowed, after a very gradual onset, for a definitive ;) diagnosis of CFS. After really overdoing it more than a few times, I can almost sense PEM before it occurs. For example, as long as there is no chance that I am going to perform any exercise, I can think about it. I might think, well, I will just ride my bike to the grocery store tomorrow since I feel relatively well and I would like to enjoy even a short bike ride. Come the next day, I cannot even think about taking that bike ride--mentally the will and conception to perform the act do not even occur. I think that this is just my body's reaction to having overdone it repeatedly before--an instinctual response. I hope it does speak to the special nature of PEM in CFS, though, (and that I am not just wacky!!)

    Denn
  15. CJB

    CJB Senior Member

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    Too funny, Denn. I'm sure you're no wackier than the rest of us!! It's the one symptom I've tried to tell my doctor about that just has never seemed to sink in. I don't know if he thinks I'm lazy or what, but the information just doesn't seem to compute.

    I've always thought of it as a metabolism problem - particularly with the extreme muscle pain - it's like the lactic acid can't move out of the muscle and the muscle feels injured - not just overexercised.

    I can't think and speak when I'm standing up. I get out of bed and get halfway down the hall and realize I don't know where I'm going or why. I used to turn around and head back to bed, but now I just wait and it takes a few minutes and I remember.
  16. redo

    redo Senior Member

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    Might be a bit off topic, but anyways. With you guys, is it so that most/all of your symptoms get worse after exercise? Or is it mainly the fatigue symptom?
  17. mon me

    mon me

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    I'm beginning to conclude from reading various posts here is that some of us exprience PEM and others PENE. I experience PENE so although there is "fatigue" it's mostly neurological for me. My gait is uncoordinated/loss of equilibrium, slurred speech, difficulty maintaining concentration and many other symptoms.

    This is why I think PENE is exclusive to ME because of injury to the brain, I have not come across any other illness that suffers neurological symptoms upon exertion/exercise.

    I watched an interview last night with an ex NHLer who suffered concussions and if I didn't know he was talking about hockey I would have thought he had ME without the immunological symptoms.
  18. madietodd

    madietodd Senior Member

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    Most of my reactions are delayed, so I can get away with overdoing for a few days. But when the 'hit' comes, it's tired legs, no motivation to do anything, inability to be social, increased noise sensitivity, worse sleep, and slow mental processing. Well, I live with these all the time, but it all gets worse together.
  19. xchocoholic

    xchocoholic Senior Member

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    PENE better describes my pem for the same reasons. And no food, drug or supplement I've tried yet has had any affect on stopping this from happening or undoing it once it's there.

    I thought Dr. Peckerman's hypoperfusion due to orthostatic intolerance theory explained this ...


    http://forums.phoenixrising.me/show...in-CFS-POTS-leads-to-PENE&highlight=peckerman

    Lack of blood in our upper body would cause each organ to fail or at least go into spasm. When I lay down I can feel my lungs, etc relaxing again. Unfortunately, since my BP drops within 3 minutes and I live alone, I can't stop this from happening ..

    I wonder what the results of a pacific labs test would be if the patient was well rested to start, stayed supine during the test and were tested the next day again in the supine position. I wonder if they'd have pem / pene then ?

    BTW. I DON'T think this is the only illness with PEM / PENE either. Just what I've seen in my celiac support group meetings, most people who've asked their doctors why they were tired, off balance, still can't eat without having symptoms, etc, etc were told it was normal or their labs were normal and not to worry about it. And so they suffer ... Thankfully we have the internet so we can get to the bottom of these things ... : )

    tc ... x
  20. Tristen

    Tristen Senior Member

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    For me, PEM is an exacerbation of all my usual symptoms. Same tune, with the volume cranked up.

    Fatigue is not on my symptom list, before or after flares. Otherwise, I fit the CCC and ICC perfectly. The illness is much too debilitating to observe fatigue. It's like being poisoned. I can be mild-severely poisoned, but no where in that range of severity is a symptom resembling what I would call fatigue.

    I know people with RA, MS, and Lupus can have exacerbated symptoms following stress/exertion, and sometimes put them down hard, but I doubt their PEM symptoms are exactly like ours. Yet I do believe there is an overlap in pathophysiology.

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