Post exertional malaise

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by tjblueeyes, Apr 5, 2013.

  1. tjblueeyes

    tjblueeyes New Member

    Does anyone else suffer from this? I cannot tolerate any kind of exercise. I've tried warm water exercises. I can't even ride a stationary bike for 5 min. and I'm in bed all the next day or two feeling like I'd been beaten up by about 10 guys the night before-feel bruised all over. I hate that I can't exercise! I weigh about 15 lbs. more than I should.
  2. Janalynn

    Janalynn New Member

    I have Fibro (severe) and Chronic Fatigue (not Syndrome). I used to just have to exhaustion, needed to rest everyday, would often sleep an entire weekend away, or TRY to, rarely sleep well at night etc.

    It has turned into such sheer exhaustion that it is more than frustration, it is absolutely mind boggling that I have to lean on the counter to stand at the microwave to reheat a cup of coffee. I am completely ZAPPED of all energy in my body.

    To take a shower than expect to do anything else that day is not an option for me. Oh I always have high hopes, but those are quickly dashed.
    Something as simple as a shower, a quick pick up (NOT a house cleaning, can't do that) of my main living area and maybe having my kids over for dinner will completely knock me out for 3 days.

    With Fibro you want some form of exercise, which has always been tough for me because I have very bad intense pain. But this PEM makes even the slightest amount or form of exercise near impossible. It contradicts what is best for Fibro - you're kind of stuck.

    People that experience this know that it is way beyond being tired or needing a nap or to rest. It is SHEER exhaustion. It is not being able to lift your head or possibly stand for any length of time, it interferes with your thinking.

    Very sorry you're dealing with this, I completely understand. I hope knowing you're not alone gives you at least a tiny bit of comfort.

    Janalynn
  3. Janalynn

    Janalynn New Member

    I have Fibro (severe) and Chronic Fatigue (not Syndrome). I used to just have to exhaustion, needed to rest everyday, would often sleep an entire weekend away, or TRY to, rarely sleep well at night etc.

    It has turned into such sheer exhaustion that it is more than frustration, it is absolutely mind boggling that I have to lean on the counter to stand at the microwave to reheat a cup of coffee. I am completely ZAPPED of all energy in my body.

    To take a shower than expect to do anything else that day is not an option for me. Oh I always have high hopes, but those are quickly dashed.
    Something as simple as a shower, a quick pick up (NOT a house cleaning, can't do that) of my main living area and maybe having my kids over for dinner will completely knock me out for 3 days.

    With Fibro you want some form of exercise, which has always been tough for me because I have very bad intense pain. But this PEM makes even the slightest amount or form of exercise near impossible. It contradicts what is best for Fibro - you're kind of stuck.

    People that experience this know that it is way beyond being tired or needing a nap or to rest. It is SHEER exhaustion. It is not being able to lift your head or possibly stand for any length of time, it interferes with your thinking.

    Very sorry you're dealing with this, I completely understand. I hope knowing you're not alone gives you at least a tiny bit of comfort.

    Janalynn
  4. IanH

    IanH Active Member

    If you have both of these as I did then it is a great trap to be in. Actually exercise helps both but the PEM will stop you from exercising. It is no good trying to exercise when you have rapidly triggered PEM. about the most anyone can manage is a few stretches but they are better than nothing.

    This is why it is important to solve the energy problem first. It can be done with supplements. There are two steps.

    1. Know your energy envelope. (refer to Dr. Leonard Jason's site for advice on this).
    2. Supplement your diet for energy management, basically the mitochondrial myopathy treatment based on B12, acetyl-carnitine, CoQ-10 ( and if you can : ribose and creatine. After one month of this your energy should lift noticably.

    See my post : http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1426304&setBoard=FM#1426304


    For PEM it is important to improve muscle and nerve recovery from "exercise" damage and oxidative stress. This can also be done with supplements taking the following:
    Glutathione-sub-lingual (or its precursors NAC, Folate and B6,) and vitamin E and vitamin C.

    Exercise induces muscle damage especially in untrained individuals and weekend exercisers. This damage is normal oxidative stress and full recovery usually takes two days because of the involvement of post-exercise elevation of immune system defenses at sites of muscle damage post-exercise.

    The integrity of the mitochondria is critical to this recovery by increasing energy (ATP) and by removing stress products with antioxidants such as glutathione, vitamin E, Vitamin C and Vitamin D.

    These antioxidants do not act alone, they need each other to do an effective job. There has been a lot of research into the role of each one in muscle recovery but only recently has research been able to look at the combination, hopefully we will see more research.
    Which I think is more promising in the short term than pharmaceuticals.
    [This Message was Edited on 04/23/2013]
  5. IanH

    IanH Active Member

    If you have both of these as I did then it is a great trap to be in. Actually exercise helps both but the PEM will stop you from exercising. It is no good trying to exercise when you have rapidly triggered PEM. about the most anyone can manage is a few stretches but they are better than nothing.

    This is why it is important to solve the energy problem first. It can be done with supplements. There are two steps.

    1. Know your energy envelope. (refer to Dr. Leonard Jason's site for advice on this).
    2. Supplement your diet for energy management, basically the mitochondrial myopathy treatment based on B12, acetyl-carnitine, CoQ-10 ( and if you can : ribose and creatine. After one month of this your energy should lift noticably.

    See my post : http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1426304&setBoard=FM#1426304


    For PEM it is important to improve muscle and nerve recovery from "exercise" damage and oxidative stress. This can also be done with supplements taking the following:
    Glutathione-sub-lingual (or its precursors NAC, Folate and B6,) and vitamin E and vitamin C.

    Exercise induces muscle damage especially in untrained individuals and weekend exercisers. This damage is normal oxidative stress and full recovery usually takes two days because of the involvement of post-exercise elevation of immune system defenses at sites of muscle damage post-exercise.

    The integrity of the mitochondria is critical to this recovery by increasing energy (ATP) and by removing stress products with antioxidants such as glutathione, vitamin E, Vitamin C and Vitamin D.

    These antioxidants do not act alone, they need each other to do an effective job. There has been a lot of research into the role of each one in muscle recovery but only recently has research been able to look at the combination, hopefully we will see more research.
    Which I think is more promising in the short term than pharmaceuticals.
    [This Message was Edited on 04/23/2013]
  6. ... I'm in the same boat you are...

    Unfortunately, PEM is part of CFS/ME and is one of the toughest symptoms to deal with. I want to be able to exercise too... I used to before this DD kicked in... I use to be in such great shape... Now, just walking for a little bit (not even far) leaves me winded... And standing on my feet too long can make feel like I'm going to collapse... It's SO unacceptable to me!

    And yes, when I push and overdo, I'm in bed for days after feeling like I've been run over by about 10 locomotives... Sometimes I describe it like you have... Feeling like I've been terribly beaten up or in a horrible car accident.

    So you are not alone in that. Pacing is a big part of managing this disease, which I still struggle with. When I feel a little energy, I want to make the most of it and usually overdo it... It's so hard not to.

    But I keep researching the internet and learning from this board and trying different things hoping I will hit on the right combination to turn my health around. But I also pray for total healing as well... For me and all on this board. I will pray for you as well, tj...

    I'm glad you discovered this board :) Welcome :) and God bless you!

    Blessings,
    Shel
  7. harrysmom

    harrysmom New Member

    I am the same way. I have had CFS and Fibro for 16 years now. I can't do anything aerobic. I can do some stretching type exercise or a little easy Yoga and I move around a lot throughout the day doing my laundry and cooking and caring for 5 cats and some potted plants and as long as I take breaks and don't go beyond a certain limit I don't get the PEM. Trying to walk too far or, as I said, anything aerobic....forget it. I can feel it coming on and if I'm not careful I can land myself in bed.

    Sometimes I can ward it off by taking some B 12 and some extra B complex and eating some dark chocolate and drinking some extra water and immediately laying down for an extended period of time. All this used to be worse during the first years I was sick. It probably isn't that I don't still get PEM it's just that I know how to avoid it by being really careful not to do certain things or overdo.

    Harrysmom
  8. hermitlady

    hermitlady Member

    I suffer from this too, doesn't take much activity to make me crash for days.

    Some old friends of mine who I hadn't seen in ages were trying to get me to join their gym a couple of wks ago. I tried to explain the exercise issues I deal with, but they just didn't seem to get it.

    Some days, just showering is a struggle! They just kept telling me to come join them to workout...they meant well, but it was irritating that they wouldn't seem to listen to me.

    Some energetic, healthy people just don't seem to understand why we can't do the things "normal" people do, very frustrating.

    This wk for some unknown reason I was feeling "well" enough to do some errands and shopping, but today I can hardly walk! My feet hurt so bad, including the rest of my body. Never fails!!
  9. mbofov

    mbofov Member

    Post exertional malaise is the hallmark of CFS. I've had PEM for 14 years and have not been able to increase my exercise level in all that time. I used to be very active physically but can't any more.

    The only way I am able to keep my weight under control is to watch everything I eat, eat low carb, protein with meal, lots of vegies no sugar or white flour etc., and no eating after 7:00 p.m. I lost 45 pounds over several years sticking to this eating plan, and could stand to lose 20 more, but it's a very slow process, but it does work.

    I do feel better in general between crashing, since starting metafolin form of folate and extra potassium. I've been taking B12 for years with no noticeable improvement, but the metafolin really made a difference, but also increased my need for potassium. B6 in the form of P-5-P also helped energy.

    But none of these things have increased my endurance, darn!

    I think if the cause of PEM is ever found, it will solve the mystery of CFS. It is amazing to me how I can have such normal blood work but my life has come to a screeching halt.

    Mary
  10. ... the cause of PEM is mitochondrial dysfunction in PWC... Our cells have lost the ability to quickly replenish the ATP that gives us energy the way our cells were designed to do... Dr. Myhill explains about it in her book. It takes our cells days to replenish the ATP instead of just minutes or hours.

    I also wonder how many of us have blood flow insufficiency to/in our hearts. Dr. Myhill and some other M.E. experts talk about this. I'm sure not everyone has this, because we are all at different levels of this illness and we all have other unique combinations of conditions going on in our bodies at the same time.

    But for me, I do know that my heart is not as strong or as healthy as it once was. And I do feel that contributes to my weakness. Traditional heart testing won't pick up on this particular problem though, unless its a doc knowledgable of CFS/ME who knows what to look for. We DEFINITELY can't go through a "stress test"!

    Years ago, before I knew that I had ME/CFS, I was in the hospital because we thought I had had a mild heart attack... And they wanted to put me through a stress test, but I told them I was way too weak to get on a treadmill (why would you do that anyway if you suspect someone has had a heart attack?! Seems crazy to me!). So they did a "chemical"stress test where they put some chemical in me to speed up my heart while I was lying down... It was HORRIBLE! It literally felt like my heart was about to explode! And I was in WAYYYY worse shape after that... If only I had known then what I know now...

    Shel

  11. TigerLilea

    TigerLilea Member

    I have been this way ever since I became post-menopausal. I've been told that it is "normal" and that it should only last for a few years. Right now "a few years" feels like a lifetime. Before menopause, I could get small amounts of exercise as long as I didn't overdo it, and didn't try doing it every day.
  12. mbofov

    mbofov Member

    I've read Dr. Myhill's theories about PEM, and they make a lot of sense - but the $64 million dollar question is, WHY have our cells lost the ability to quickly replenish ATP? Is it a virus, toxins? It seems there must be a common cause among all of us who have this most baffling symptom.

    And another puzzle is, I can do X amount of activity - (about 3-1/2 hours of light activity) in a day, and avoid crashing the next day if I stay inside that limit. But if I go over that limit, say 4-1/2 hours, I crash the next day. So my body is able to replenish some ATP from the first 3-1/2 hours of activity, but go over the limit, something happens. I often wish I had a gas gauge which will tell me when I'm running low on fuel!

    Mary
  13. Mary, I have often said the very same thing! At least you've figured out where your "fine line" is that you mustn't cross... still so frustrating though, I know! I'm still trying to figure out where my "fine line" is :-\

    There's just so many variables that impact this for us! Its not just the physical stress and demands that drain us, but emotional stress and even doing quiet "brain work"... and then of course, if we're not able to get the proper sleep, that adds another drain and problem...

    There are times when my "energy envelope" seems a little bigger... and times when it is incredibly small... or even non-existent. And I'm sure it depends on how many of the above things I mentioned are draining my energy.

    Since we are all at different levels of illness... some are at only 10% of their former activity level and some are at 30%, 40%, 50% or higher, I suppose some of our cells' functions are more damaged than others... perhaps some are even healing so they start improving.

    I do believe that toxic load and viruses, BOTH, are responsible for damaging our cells... Perhaps our immune system was over-activated by all this onslaught for so long that even our own immune system damaged our cells as well... I don't know...

    But as I understand it, our damaged cells can produce X amount of energy (will be different for everyone depending on the extent of cellular damage) and once we use that amount up, if we keep pushing, the body starts using ADP which is converted to AMP, which cannot be recycled. And the only way that ADP can be regenerated is from "fresh ingredients", but this takes days to accomplish.

    According to Dr. Myhill, "When patients overdo things and "hit a brick wall" this is because they have no ATP or ADP to function at all."

    She goes on to say, "In CFS there is a balancing act between energy levels and cell damage -- most people get this wrong, overdo things and end up with tissue damage, which is a disease amplifying effect. Pain and fatigue are the symptoms which protect the body from over-doing things."

    Based on that statement, I'm afraid that I have A LOT of tissue damage, because for the first 6 years that I had this disease, I didn't know WHAT was wrong with me, even going from doctor to doctor, and I would continually push myself for my family and extended family and friends and was stuck in that push-crash cycle for years!

    Even today, I still tend to push myself over my limit from time to time, even though my ability to push is greatly diminished now. So there's no telling how mush tissue damage I've caused over the last nine years... which I'm sure has sent me on this downward spiral :-(

    I've tried wearing a heart monitor with an alarm that goes off if I exceed my anaerobic threshhold, but it was going off right and left, just from getting up to go to the bathroom or walking from the commode to the sink to wash my hands... so I finally had to give up on it...

    I would love to know if anyone on this board has used Dr. Myhill's protocol and if it helped them...

    Blessings,
    Shel
    [This Message was Edited on 04/07/2013]
  14. MicheleK

    MicheleK Moderator

    Tigerlilea, I don't know how anyone could tell you that menopause causes such extreme exhaustion that lasts for a couple years. Clearly they are misinformed. It is NOT a symptom of menopause.

    True some may feel a bit more tired during some stages of menopause but nothing like what you described or what is experienced as PEM in ME/CFS.

    Unfortunately with ME/CFS patients the "energy envelope" is a moving target and each day has to be evaluated as to how you are feeling before you attempt to go about any sort of activity. Even trickier is we have to stop doing things way before we feel any kind of tiredness.

    It's very bizarre. I often feel like I have the Wizard of Oz up in my brain throwing switches randomly like a madman. Some days so many switches are going off, I cannot do anything but get to the bathroom. The very next day I could wake up and be able to do an hour of something without tiring.

    This illness would be a lot less frustrating if the energy level stayed close to the same all the time. At least then we could get on some sort of regular schedule.

    Very, very, frustrating!
  15. alyssalyn

    alyssalyn New Member

    Been there done that. If my adrenal glands are fatigued, I can't even tolerate 15 minutes exercise every day or going up flights of stairs (this has recurred several times in years when I have been overworked, then I can't tolerate exercise well, and if someone advises me to exercise, it will make me ill). If my adrenals are low, I get this weird sleepy groggy feeling after too much exercise. Ginseng is an adrenal stamina booster. Here locally it costs $1.00 per root from a health foods store, and you soak the roots and chew them. There are cheaper prices online, but I think the local ones provided the best energy and stamina. I would NOT try licorice root. It is not good for blood pressure, and can make a person dizzy. Adrenal glandulars can help too, but only if you have the right one. Go to a doctor who is into natural medicine for advice about that if you want.
    [This Message was Edited on 04/10/2013]