Postexertional Malaise anyone found anything to help?

Discussion in 'Fibromyalgia Main Forum' started by gracepartaker, Aug 30, 2006.

  1. gracepartaker

    gracepartaker New Member

    One of my worst symptoms is how exhausted I get from a walk. I continue to go down hill with this. Yesterday I walked for 5 minutes and am so exhausted today I'm still recooping. I have been laying in bed for over 24 hours now.

    I start the walk feeling great. I don't get any warning that I'm tired till it just hits. I use to could walk 20 then 15 then 10 now I'm down to 5.

    I know about pacing and do that very well. I just can't seem to exercise at all.

    Any thoughts would be appreciated
    Blessings Sally
  2. helpeachother

    helpeachother New Member

  3. Rosiebud

    Rosiebud New Member

    I cant do any form of exercise Sally or I pay for it with a vengeance.

    Yes listen to your body, dont push it or you will make the pain and fatigue worse.

    I do know that some people benefit from gentle yoga exercises but have never felt up to trying them myself. If you put 'yoga' in the search box you might come up with some advice.

    love
    Rosie
  4. Marta608

    Marta608 Member

    Hi, Sally - This is one of my most severe symptoms but it does seem to come in cycles. Try not walking for exercise for a week - I'm assuming you don't walk every day but if you do, resume at every other day - and try doing gentle stretching on the in-between days.

    Good luck!

    Marta

  5. carebelle

    carebelle New Member

    I do this to.
    I get up do a little house work or walk from the mail box into the house and its like a huge wind of exhaustion comes over me.
    I can not even shop anymore .Yesterday is the first time I tried in years .I walked in to exchange a few things at two places and if my husband had not been driving I wouldnt have gotten back home so soon, I may have taken a nap in my car.
    My brain wants a normal life (most days lol)I want to do the things I use to .I dream of the day I can fill with activity and slip into bed without the fear of being there for a few days just to cope with the pain.

    after saying all of that I would advise you to get a good check up. Some tiredness we feel can also be from heart problems.Make sure theres nothing new going on there.Do not always think its CFS/FM.

    We do not want to toss all our problems into one pot either let the Pro's figure it out ,if nothing else that should give you peace of mind.


    I hope you feel better ! Do get some good rest.


  6. monkeykat

    monkeykat Member

    Hi Sally,
    Yes, this has been by far my worst symptom. I've made amazing progress in my health over the past 2 years when I was bedridden/couchbound most of the day.

    I've done a lot of alternative stuff to get rid of other severe symptoms but the exertional fatigue is still a major problem. I'm so happy that I'm functioning at about the level of an 85-90 year old at this point but I want to do better than this.

    I couldn't exercise at all. 10 years ago I started noticing that I'd get ill if I tried to exercize so I stopped doing it.

    I have wanted to exercize over the years but I couldn't even do my basic self-cares some days so exercise became walking rather than crawling around the house when i was able.

    I was able to walk around the block for the first time in many years last fall. Then 2 blocks then eventually 3 blocks. However, my glands would swell up and I'd end up bedridden for the evening or the following day.

    My GP suggested trying light yoga or a trampoline as they do not stress the immune system like walking. I got a Needak trampoline with a safety bar this past spring and it has made all the difference in the world. I could only gently move my heels or bounce for 2-3 minutes initially but eventually I have gotten up to 10 minutes most days on it. Bouncing on the trampoline is very healthy for the immune system. it made a big difference for me, I wish I had known about it years ago.

    Take care, Monkeykat
    [This Message was Edited on 08/31/2006]
  7. mbofov

    mbofov Active Member

    I too have post-exertional malaise, but it is not as severe as it used to be. Things that have helped me with energy and endurance are:

    l-carnitine (3,000 mg. a day - less did nothing for me)

    magnesium and malic acid, or magnesium malate

    calcium pyruvate

    RNA/DNA by Nature's Life - 2,000 mg. a day

    NADH - 20 mg. a day - it's rather expensive at this dose, but a lesser dose did nothing for me. I did have to stop taking this because it was too expensive.

    sublingual B-12 (methylcobalamin)

    I think the RNA/DNA is helping a lot. I've been taking it for about 5 months. It's been difficult to tell because I've been battling sickness and heavy metal detox and a few other things for several months, but I think I'm finally coming into the clear. I went swimming yesterday, was pretty careful but actually did some real swimming, and I didn't crash today. I know I would have before, and think it's due to the RNA/DNA.

    Also, you may need some adrenal support. If your adrenals are weak you will have no stamina. I took adrenal glandular products for several years and finally got off of them recently, although I am taking Ashwaganda for adrenal support. And if your adrenals are weak, you will also need a good B vitamin complex and extra pantothenic acid.

    And your thyroid may need support as well. My thyroid always tested normal but my doctor put me on Armour thyroid anyways because of my symptoms, low body temperature, lack of stamina.

    I hope this helps --

    Mary
  8. Daisys

    Daisys Member

    Thank you for that suggestion--I went to Recoveryfromcfs and it's an excellent site. I printed out quite a lot for my sister who has CFS only, and doesn't have a computer.

    It's an interesting read.
  9. Slayadragon

    Slayadragon New Member

    This is going to be controversial, but I'm going to post anyway.

    I get post-exertional malaise not just from exercise but also from having a stressful or just busy day. Traveling to another city to give a presentation.

    On those days, I take a small amount of hydrocortisone (5-20 mg) early in the morning.

    I have low morning cortisol levels, and so it does wake me up without other stimulants.

    I think more importantly, it keeps the adrenals from having to work extra-hard to squeeze out the extra cortisone needed for those activities on their own.

    I don't know that anyone's sure of all the things that cause postextertional malaise, but depleted adrenals is certainly one of them.

    I find if I do this, I'm not nearly as exhausted as I otherwise would be the following day.

    On the other hand, if I wait until I'm feeling bad, there's nothing that can make me feel better except lots of rest.

    I don't use the cortisol very often, even though my doctor said it would be appropriate to do so. I wouldn't do it for exercise, except in a really unusual circumstance. But for stressful days, I think it does help.

    Does it decrease my immune system? Maybe, a little. But being weakened by extreme fatigue/malaise would make my immune system even lower, I think.
  10. mezombie

    mezombie Member

    I agree with Haylecole, Bruce Campbell's ideas help me--when I use them. I've been slipping, partly due to using this message board (ironically)!

    His course is well worthwhile. Even if you understand his principles and/or have read his book, there is something about the weekly e-mails exchanged with others using the book that is very helpful.

    I found it really helped me focus on targets and, most important, <b>discipline</b> myself to actually follow the recommendations.

    The program helps, is drug-free, and inexpensive.
  11. Slayadragon

    Slayadragon New Member

    I try to eat as much salt as possible (although probably don't drink it dissolved in water as often as I should). I also supplement with artificial aldosterone (Florinef), which is an adrenal hormone that keeps water in the body. Otherwise my blood pressure can falll to 80/50.

    I get post-exertional malaise from exercise (even a little bit of exercise, of course. From a physical point of view, busy days have more activity, and so from that perpsective alone you'd expect a crash afterwards. (Walking through airports can take at least 20 minutes, for example.)

    Also, to me, the crash following stressful days (e.g. ones where I'm just sitting on my butt driving somewhere for 8 hours but hardly walking at all) feels the same as the one following heavy-exercise days. If post-exertional malaise is caused by the adrenal glands overexerting themselves by trying to squeeze out enough adrenaline, then it would make sense that being "busy" (and especially stressful busy) and "exercising" would have the same result. Adrenaline is pumped out during exercise and in stressful situations, of course.

    Are there other theories of what causes post-exertional malaise, though? I haven't read up on this topic for a while, I don't think.

    Thanks!
  12. code34me

    code34me New Member

    I have been feeling decent latley and have been doing some yard work and some walking. In the middle of the day I just crash! I then take a 2 hour nap. I get up and finish my day.

    Later I look outside and see what I did! I feel much better about myself even though I had to lose some of my day to exhaustion.

    I feel it is much better to do a little walking and then rest or sleep. It has got to be better than not getting any exercise at all.

    Sally at least you know you are giving it a shot! I think doing what we can and then resting as much as we need (if we can) is a fight agaist this DD.

    Take care of you! Codey
  13. shar6710

    shar6710 New Member

    I would take the suggestion to stop walking for awhile.

    You don't have a lot of info in your profile about how long it took to get your dx but it seems that you are early into the DD. And compared to many here so am I. But I continued to push myself for 2 years.

    You have to remember that EVERYTHING you do counts as exertion. Showering, cooking, working and if you get bad enough, even sitting up. While you should stay as active as you can, listen to your body and cut back until you do not have the post-exertional malaise. I believe the longer we continue in the push/crash cycle the longer it will take to recover and be able to live a more normal life.

    I know it's hard to cut back on the things you like to do but please don't do like I did (and still do) and continue to push, push, push.

    Good Luck,
    Shar
  14. MtnDews

    MtnDews New Member

  15. Lolalee

    Lolalee New Member

    As you probably know, post-exertional malaise is a hallmark symptom of CFS. I have FMS and CFDS and I have tried various types of exercise and like you I was able to walk about 20 minutes several months ago. Then my body just crashed. I know I pushed myself too hard, thinking that if I could do 20 minutes, I could push and do more. As others have mentioned, rest is the absolute best thing for CFS. I am finally learning what works after being diagnosed over 8years. For all those years, I just refused to accept this illness and pushed myself until my poor body just said "Enough!!!".

    I have benefited from Bruce Campbell's website as recommended by HayleyCole. I also am learning so much from an online book called "Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment" by William Collinge,Ph.D. I wish I would have known these about the importance of rest when I was first diagnosed.

    Since your post is entitled post-exertional malaise and you also talk about how exhausted you feel (two very different things - malaise and being exhausted), I thought I'd post the following about fatigue:

    Here is just a sample of what Collinge says about fatigue:

    THE WISDOM OF FATIGUE
    In CFS the relaxation response has particular importance. The experience of fatigue is caused by certain cytokines released by the immune system. These cytokines are detected by neural receptors throughout your body. These receptors send the message to the brain that there is an elevated presence of cytokines in the blood, and the brain responds by trying to slow you down. Why would the brain do this? Is the fatigue merely a mistake, an aberration which serves no purpose?
    Let us consider the possibility that the fatigue is a purposeful response on the part of your body. It serves the purpose of getting you to rest. This is your body's way of getting the relaxation needed to allow healing to take place.
    Remember, your body knows how to heal. You can respect the fatigue as an intelligent response. Rather than thinking of it as an inconvenience or an adversary, it is part of your body's effort to promote healing. Its intention is to allow the deep relaxation needed so your body can realign itself with its inborn programming. When you argue with your body--that is, when you attempt to go on and ignore the symptom, it will escalate and win. You cannot defeat the wisdom of your body.

    Blessings,

    Lolalee


    [This Message was Edited on 09/21/2006]
  16. Lolalee

    Lolalee New Member

    I'm so glad that you found this information useful. I can't tell you how much this new realization of the importance of rest has changed my life. I just can't help but want to share something that I'm getting so much benefit from.

    Two physicians have recently tried to encourage me to take something for the fatigue (I think it was a drug called Provigil). I said no, thank you. I knew that if I took something that might artificially increase my stamina that it would defeat this natural process of improving my health through resting, breathing, meditation, visualization, etc. that just feels so right. Also, I didn't know if this early into my new approach to better health, I could trust myself with some added energy. I was concerned that I would jump back into that push/crash cycle. Hey, we're talking about close to 60 years of conditioning and living life a certain way. It's going to take some time for me to settle down. So, right now I don't have much choice. My body just won't be pushed.

    Lamotta, this is probably a lot more than you wanted to know...LOL.

    Lolalee
    [This Message was Edited on 09/21/2006]
  17. Slayadragon

    Slayadragon New Member

    I've tried Provigil several times, at various dosages. It makes me feel great (like normal) when I'm on it, but then I crash big time the next day. If I take it more than a couple of days in a row, I start to feel really fuzzy and not-normal, sort of like I imagine just being on plain speed would be.

    I will have to say that it was nice to feel like my old self for the first time in 11 years, though. It made me realize more firmly that this actually _is_ a real illness, that it's not just that I'm not as motivated as I used to be. I've known that theoretically for a long time, but doing a side-by-side comparison sort of proved it to me at a deeper emotional level.

    It wasn't a really bad crash after I took the stuff....I just lay in bed all day, but it wasn't like I felt like every pore in my body was dying (which I have on occasion). I might use it again on a single-day basis someday, although I'm not sure what the occasion for it would be.
  18. Lolalee

    Lolalee New Member

    I totally understand what you mean about taking Zoloft. But, you probably did what you thought was best at the time and that's all anyone of us can do. If this med helped you get through a difficult time, then it served it's purpose and who knows if you had not taken it whether things could have gotten worse for you in other ways. If you would have known to choose a different or better path, you most likely would have. Maybe the Zoloft just delayed the onset of CFS for a while. I think we all have wondered at one time or another if we could have done something to prevent these awful illnesses.

    Lamotta, I can't back-up William Collinge's methods in his book that I mentioned earlier. I've only been reading it online for the past month and if it is going to work for me, I'm sure it will take a while. However, I'm keeping an open mind and a lot of what I am reading rings so true for me. Here is another little blurb from his book that comes to mind with regard to what we've been discussing.

    .... People with CFS often find that the syndrome directly challenges all that their lives have stood for. Many have found that to make it through this existential crisis, they have had to find a way to fit this illness into the overall fabric of a meaningful life. In this chapter we will explore how former patients successfully dealt with this aspect of CFS, and how in many ways their lives were deepened and enriched through this experience.
    In his book Man's Search for Meaning, psychiatrist Viktor Frankl described how people living in tremendous adversity fared better if they were able to find meaning or purpose in their circumstances. Frankl was talking about prisoners of Nazi concentration camps in World War II. Yet we now know that his observations also apply to the adversity of a chronic or life-threatening illness. There is a growing consensus that patients who maintain a sense of meaning or purpose have better medical outcomes than those who do not.
    The invitation I would like to offer you in this final chapter is to see illness as a catalyst for personal growth and expansion. In short, you can use your illness as a teacher. If you do, then it is not just a cruel, random act of nature, and you are not simply a helpless victim. You redefine your passage through this illness as a journey of discovery, and you have resources with which you can confront the challenge and achieve mastery over it. Research in health psychology has shown us that people who take such a "challenge" perspective are hardier and recover more quickly from illness.

    How Can Illness Be Beneficial?
    Psychologists have long been interested in what they call the secondary gains, or benefits, of illness. There are two ways in which illness can be beneficial. One is when it serves to rescue or remove us from unacceptable or unwanted circumstances. The other is when it brings us unexpected insights or discoveries which enrich our lives and advance our growth.
    Usually discussions about this subject focus on the role illness serves in helping the person avoid unwanted circumstances. Consider, for example, the child who creates a stomachache on the morning that he doesn't want to go to school, and the stomachache disappears shortly after Mother gives her permission to stay home.
    In this case, the illness was created by the person to manipulate a situation and achieve certain benefits. However, one of the most painful things a person with CFS can hear is the suggestion that they created the illness for some gain. Granted, there are many cases where CFS has forced people to make lifestyle changes that turned out to be very desirable, such as quitting a high stress job or leaving a destructive relationship. Yet this illness is far too complex to be something that can be created for such a purpose.
    It is certainly worthwhile to examine whether the illness is bringing relief from some otherwise unacceptable circumstance. If this is the case, then you may not be pursuing your recovery program with full commitment.
    Our focus here, however, is on the other kind of benefit-one which, for many patients, has been totally unexpected yet greatly appreciated. CFS has served as a teacher and an opportunity for personal growth. As you have no doubt found, this disease can force you to re-evaluate your values, purposes, and whole way of life. Various people have described this illness as a wake-up call or a two-by-four over the head. Perhaps a more sophisticated term is to call it a "pattern-interrupt." This is a term used by hypnotherapists to describe something that interrupts or changes old, unconscious patterns of living or acting, and makes room for something new and better to happen

    Lamotta, I don't know about you, but reading this gives me hope. Hope that I can at least modify my behavior and do some things that will help me have a better life with FMS and CFIDS and possibly go into remission. I can't work. I'm so sick that I'm housebound, mostly confined to my bed or couch. So, what else do I have to do. I think this is a good use of my time right now. At least it feels right for me. This is where I am at right now.

    OK, I've done it again. Hope I haven't bombarded you with too much and if it doesn't ring true for you, I realize we are each in a different place.

    By the way, I feel like I should address Sally and say that I hope that our conversation has been helpful to her. Sally, I didn't mean to take over your thread. Please feel free to jump in and comment.

    Lolalee

    [This Message was Edited on 09/21/2006]
  19. morningsonshine

    morningsonshine New Member

    back to the top! Bump[This Message was Edited on 09/22/2006]
  20. PVLady

    PVLady New Member

    Try drinking a package of Emergen C. It has vitamin C as well as other electrolytes and it does pep you up.

    I recently started using bio identical hormones and they are really helping me in every way. I got them from the office of Dr. Holtorf in Torrance, CA.

    I am feeling better every day it seems..

    Have you been tested for viruses, Epstein Barr? and others?

    I had your symptoms for years and am better now, but at the time, I was just like you are now. I recently found out I have a blood titer of over 3,500 of the EB Virus, seen as a "old Infection".

    I am anxious get results from additional testing done last week. What you are describing sounds like someone with chronic fatigue, you may have the EV Virus.

    If you have not already done so, you might want to get tested for all viruses plus Lyme.


    Hope you are feeling better soon.