Post Exertional Does Anything Work on it?

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Sep 10, 2009.

  1. TeaBisqit

    TeaBisqit Member

    I did some physical stuff today and this isn't just malaise, this is like Post Exertional Dead. I feel like I can't move and must sleep or will die. And I'm dizzy laying here. There is no energy in the cells. It's not there.

    When I do stuff, I only last about an hour and a half, then I'm dead like this. That's it for the entire day.

    Has anyone found anything that helps with Post Exertional Malaise? Does anything put energy back into the cells or help make you have more stamina?

    I have no doubt I will be dead tomorrow, too. And maybe the next day. Anytime I do anything, I pay for days.
  2. AuntTammie

    AuntTammie New Member

    haven't really found anything that helps once I've overdone it - I totally laughed when I read "Post Exertional Dead", though - not at you, but at how much it fits and how much I can relate....not that it's really funny, but that's so much more accurate than the term PEM....just one more way that they have managed to downplay what we experience....wish I could tell you something that would help, though, but like I said, I have not found anything yet.....I am getting worse and worse PEM from less and less activity
  3. TeaBisqit

    TeaBisqit Member

    Well, I was going to call it Post Exertional Coma, but it's more Post Exertional Living Dead. Undead. I think Undead fits it the best. It's not living.

    It just kills me when I see people twice my age doing a thousand things in a day, and I can barely make it through one small thing.

    Two days ago, I did the laundry. It nearly killed me and I've been feeling it ever since. Something about the basement, the unseen mold, the chemicals. It always flares me. And then a neighbor was down there with me and she was talking and talking and talking and I had to concentrate like crazy to understand what she was saying and act all nice and smile. And the stress and strain just added to the flareup. So I'm totally dying just from that alone.

    People never understand. And it's not like we can be rude and be telling them that they are making us really sick. But the truth is, I can't be around someone who talks alot and expects me to respond and be all happy for an hour and a half. Not with this disease. I just die.

    Today was different. It took me about six hours to feel awake and then I thought I had alittle energy to put something together. So I worked on it for awhile and sure enough, bang. Too sick to move. And I wasn't even a third done with the thing. Something that would take a healthy person a few hours or less to put together and it's going to take me days.

    I just hate getting hit with the fact that I'm not okay. And anytime I try to do something normal, the disease beats me up. And I'm sick of healthy people not believing me that I really cannot move. The looks they give us. The way their voice changes when they don't believe you. And the snide comments. I can't take it anymore :(
  4. karynwolfe

    karynwolfe New Member

    Understand everything you're saying, TeaBisquit =(

    People just can't understand washing the dishes and then not being able to use your arms for the next few days.

    I hate it when "normal" people get sick and we have to listen to them whine about not being able to do something random insignificant thing for ONE day, then they're all healthy the next day... Ugh.

  5. mbofov

    mbofov Active Member

    (your name is hard to type - I want to put a "u" after that q!) - anyways, have you tried malic acid and magnesium. This helps some people. It's helped me temporarily. I have read that it can make a big difference for people with fibro (I have CFS but no FM).

    Other things that have helped me, again temporarily unfortunately, are:

    l-carnitine = 3,000 mg. a day
    NADH - 20 mg. a day
    calcium pyruvate, I forget the dose
    d-ribose - 5 to 10 grams a day

    Someone else posted that they take NADH regularly and it helps a lot. CoQ10 helps some people. The CoQ10 has never made much of a difference for me, but you never know.

    Also, B12 sometimes helps. Shots are good - your doctor has to prescribe it, or else sublingual.

    Wish I had a magic answer -

  6. TeaBisqit

    TeaBisqit Member

    The only one I haven't tried yet is NADH. CoQ10 made me worse. B vitamins gave a small boost, but it didn't last. I took malic acid and magnesium for years. About all that did was help with the muscle flutters. Nothing really did anything except Shitake Mushroom extract, and I think that worked because it has the highest level of vitamin D in the world. Other than D, I haven't really seen anything that helps.
  7. ktp812

    ktp812 New Member

    I get the worse PEM when I work which I only do 2-3 times a week. I only can work 4-5 hours each day too.
    I work in a drug store so I am interacting with alot of people. It is extremely exhausting to stand there and listen to customers talk and or complain. I try and act normal with my co-workers although they all know I am sick. But when you look healthy and normal they forget.

    I got up yesterday and felt simply I hadn't slept and just that "sick" feeling. I had to go into work at eight and I just prayed the entire day I could make it through.

    I understand all this totally...physical exertion has never had an affect on me. It is the mental or stressful situations that get to me. Sometimes it takes a few days to recover.

    Nothing has helped me either. I just climb into bed and rest or should I say try to rest because my body never seems to be able to relax which makes it worse.

    I have tried tons of supplements that my fatigue doc put me on and nothing ever seemed to make a difference. Now I just take my regular supplements and that is it.

    I wish I had better suggestions but I keep trying different things and maybe will hit upon something that actually works for me.

    This whole thing is so unpredictible day to day I just never know what to expect...
  8. Doober

    Doober New Member

    Whenever I go over my threshold of physical activity levels....

    I forget that when I hit my peak to stop and rest. Sometimes it is hard since I want to get done what I am doing know I will have my time later to crash and lay in bed and try not to move. I usually end up going pass my peak until I hit the point when I feel like my muscles feel like they are seizing up and do not want to react to my brain signals...

    OH then comes the crash... Just find a "comfortable" position in bed and just wait for it to pass. Not really much we can do I guess. Just go through the body's internal recovery process and hope that it don't take long..

    Definately do not want to have one of those energy drinks that I was told by a friend to have. Sure, may get a little zip back in the step, but the crash hours later from the energy drink wears off is actually worse for the body then just over exertion..

    It is so hard, you know. We try to "Get up and do something" ... "I think I can like" thomas the train engine, except I got on the wrong train tracks with one of those big stoppers at the end coming to a big slamming stop...

    The next thing we say to ourselves is "Geez, what was I thinking. But I look at it as, hey, I am gonna have those "Good" days and make the best of it and hope that the worst of it stays away....

    So all I can say basically is just do the best you can. Everything we do is a learning process.

  9. jasminetee

    jasminetee Member

    I don't just crash after any exertion, I feel much more sick and experience a lot more terrible wide-spread pain of all kinds. Sometimes I also fall into a coma-like state where I'm not asleep but look like I am, can't open my eyes and am just conscious enough to know what's going on around me but can't respond. This is fairly new and usually lasts a few hours.

    I hate this. I hate CFS!!!

    Not much helps me. I just pray to get better.

  10. Doober

    Doober New Member

    You just reminded me of a few times that this happened to me.

    Once was when I layed down to take a nap and like you, I felt concious but could not open my eyes and even with my eyes shut, I felt like I was trying to sit up and try to wake myself up that way, but my body felt like it couldn't move, almost like I was being pushed back down and I was fighting a heavy heavy gravity. The other time I remember is during my "regular" sleep time.

    When I did wake up from the nap, I sat and just looked around me and I asked myself if that was real or I was dreaming it somehow. It was weird and frightning all at the same time. Frightning because I had no control either way...

    It makes me think if our brains are re-wiring themselves and shutting down the part of the brain for motor control. Anyway you look at it, it is still a scary thing to me to feel like we are looking control. Are we feeling the physical aspects of a full nervous system breakdown however short lived it is?

    I certainly understand the feelings of something we did not ask for or even fully understand the why's and how's of what we deal with wether it be CFS or FM.
  11. TeaBisqit

    TeaBisqit Member

    I know it well. It really is a form of waking coma. You can't move, but you are fully aware that you can't move. I think the body is conserving energy. Life support at bare minimum. Not fun and kind of scary.
  12. hi all,
    teabisqit im most definately having more energy and strength since ive been drinking a cupful of pre boiled water that has beetroot juice in it.i drink it once a day,usually before i go to my part time job( about 2 pm).ive been doing it for a month now.

    i boiled the beetroot for 15 mins,let it go cold,then drink the juice.

    i only put enough water in the small saucepan, to just cover one beetroot, that id sliced up.

    the beet was the only new thing that ive tried so it must be the reason for my strength.

    id say the strength is mainly in my legs,and im able to cycle ride in 4th gear now,so thats great news to me,and a first as regards those bike gears.


    these past seven days i have been drinking a pot of actimel. vanilla flavour.

    i want to be kind to my gut and try to strengthen my immune system to get ready to fight off any flu virus that might come my way.i work in a school.

    ive been drinking the actimel for 7 days now,one pot first thing in the morning.

    i can report that it agrees with my guts.i feel less bloated in the stools are soft.

    all in all i feel something different is happening inside of me,and im not belching so much i can say that my irritable bowel syndrome isnt as flared up just now.

    actimel is supposed to help support your bodys defences.i think my body likes it,so im very happy just now.

    love fran.
    [This Message was Edited on 09/17/2009]
  13. SnooZQ

    SnooZQ New Member

    I second the motion on Carnitine. I've found it helpful post-exertion but more helpful pre-exertion, to prevent that comatose state.

    Carnitine is available in various forms. Some forms are more helpful to muscle, others to cardiac function, others to mental function. I'm sold on Jarrow brand CarnitAll, which combines 4 different forms of carnitine. (No financial interest in the company.)

    One caution -- people vary in sensitivity to supps. I find that 1/3 of a 400 mg. capsule per day is optimal for me, preferably taken in the a.m. or early afternoon. Any later in the day & the stuff keeps me awake too late at night.

    If you're low on testosterone, a smidge of that hormone is also a great picker-upper.
    Best wishes.

    [This Message was Edited on 09/18/2009]
  14. richvank

    richvank New Member

    Hi, flossyfudleFran.

    I find your experience with beetroot juice fascinating. Recently I heard from another PWC that she also experienced benefit from beetroot juice.

    I don't know for sure why it helps, but here's a hypothesis: It's a fact that beets are rich in betaine (which is why it's called that), which is also known as trimethylglycine or TMG. Perhaps it's the betaine that is giving you the benefit.

    How would this happen? Well, betaine stimulates the alternative pathway in the methylation cycle in the liver, the kidneys and the lens of the eye. This is called the BHMT pathway, which stands for betaine homocysteine methyltransferase. The BHMT pathway converts homocysteine into methionine.

    As you may know, the GD-MCB (glutathione depletion--methylation cycle block) hypothesis for CFS proposes that a block in the methylation cycle is at the biochemical root of CFS. Stimulating the BHMT pathway would help to correct this in the organs where it is present. The effect would be to lower homocysteine and to raise methionine and S-adenosylmethionine (SAMe). Perhaps SAME that is produced in the liver is being circulated in the blood, and some is getting to the muscles in the legs. Raising SAMe in these muscles may be raising glutathione there, since SAMe is located upstream in the sulfur metabolism from the synthesis of glutathione.

    The importance of raising glutathione in the muscles is that according to the GD-MCB hypothesis, the depletion of glutathione is what is allowing oxidizing free radicals to block the Krebs cycle. That limits the production of ATP, and ATP is what fuels the contractions of the muscles. So lifting this block would allow the muscles to operate more normally.

    I realize that this sounds like a complex argument, but I think it is actually pretty straightforward in terms of the biochemistry.

    If this hypothesis is correct, I think it means that your response to beetroot juice is evidence that you have a partial methylation cycle block. And if this is the case, I think you would benefit from the simplified treatment approach for lifting this block.

    I suggest getting the Vitamin Diagnostics methylation pathways panel run first to verify this, and then, if it turns out to be true, I suggest that you, together with your physician, consider the simplified treatment approach for lifting the methylation cycle block. Below are the contact information for the panel, and the revised protocol for the simplified treatment approach. I am not financially involved with the test or the treatment.

    Best regards,


    Methylation Pathways Panel

    This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

    The panel costs $300 and requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on your clinician’s letterhead.

    Available from:

    Vitamin Diagnostics, Inc.
    Rt. 35 & Industrial Drive
    Cliffwood Beach, NJ 07735
    Phone:+1 (732) 583-7773
    Fax: +1 (732) 583-7774)

    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., Eastern time)

    Dr. Audhya is willing to help clinicians with interpretation of the panel by phone.

    April 18, 2009


    (Extracted from the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])


    1. FolaPro [2]: ¼ tablet (200mcg) daily
    2. Actifolate [3]: ¼ tablet daily
    3. General Vitamin Neurological Health Formula [4]: start with ¼ tablet and work up dosage as tolerated to 2 tablets daily
    4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
    5. Activated B12 Guard [6]: 1 sublingual lozenge daily

    All these supplements can be obtained from, or all but the third one can be obtained from other sources.
    The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

    [1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
    [2] FolaPro is a registered trademark of Metagenics, Inc.
    [3] Actifolate is a registered trademark of Metagenics, Inc.
    [4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
    [6] Activated B12 Guard is a registered trademark of Perque LLC.

  15. spacee

    spacee Member

    I used to get that every three weeks like clockwork. Lasted for 2 days. The first day I described it like "I couldn't make it to the drugstore (closest store to my house), if my life depended on it.
    The 2nd day, "I could make it to the drugstore ONLY if my life depended on it.

    It was exactly like you say, you brain is awake but your body is dead. I wondered for years what was doing it. Still don't know for sure. Dr. Bell thinks that the body has run out of adrenaline. So, maybe that is it.

    You absolutely cannot afford healthwise to listen to someone for 1.5 hours. That would send me straight to bed.

    I am taking the samE, gaba and small amounts of ritalin (5mg). Again, Dr. Bell says that sometimes, even ritalin won't help but I find that it takes away a "sick" feeling even if I am in bed "sick". I wouldn't be without those three.

    Generic ritalin and gaba are cheap ( $10 a month). The same E is very pricey, but prohealth will give the 40% discount on on their automatic shipment program.


  16. gapsych

    gapsych New Member

    I was talking about this feeling to my psychiatrist the other day. If I am in horrific pain or absolutely exhausted,I sometimes get under the covers and it is like I am not awake and not asleep. I have also had the unable to move feelings but don't know if I really can't.

    I had a diagnosis of narcolepsy a long time ago and am not sure if it was trumped by CFS which I don't really think I have. There is something called "sleep paralysis" which can happen with narcolepsy as well the general population but with Narcolepsy it is more frequent.

    I don't think this is what I am experiencing. My psychiatrist said it might be a physical response to the pain.

    Until your posts, I had forgotten about "sleep paralysis" but am not positive so will do some more research on it.

    If it is not sleep paralysis, which is neurological, I would guess, again I do not know for sure, that it could be neurological.

    Maybe one of us should start a separate post to see if others have this same experience.


    ETA Dooper, I loved your analogy!!![This Message was Edited on 09/18/2009]
  17. PVLady

    PVLady New Member

    When someone finds the solution I would love to know it. The only thing I know is to take Soma and stay in bed until you are better.
  18. jole

    jole Member

    TeaBisqit, those are my exact symptoms! The first couple years I was sick, it was horrible. If my kids called in the evening, I would'nt even be able to talk to them, and my hubby just couldn't understand that I could be too "tired to talk".

    And the sleeping thing...that was my very first symptom. I was fine one day, and the next in so much pain and unable to "wake up". I was soooo tired I couldn't talk, couldn't move, couldn't take anything but the shallowest of breaths, didn't care if I lived or died. But I also couldn't think. I just "was", and that's all. I was so weak I couldn't get out of bed alone, and needed help to walk. A few days later, I could walk, but not in a straight line, and ran into everything within 2 feet on either side of my target. I was still a total robot, moving but with absolutely no feelings or thoughts.

    This gradually lessened, and now 7 years later I only have it when I've overdone. The doctors have been absolutely worthless....look at me as if I'm crazy...and yes, I've seen a psychiatrist who said it was depression. I can't think anything that hits this fast overnight is depression, and I KNOW it's not depression after I do anything, because accomplishing anything is a major victory! I was dx'd with FM, but I feel strongly I also have CFS. The docs here don't believe they're two different diseases, so you only get a FM diagnosis.

    I've taken so many supplements over the past years that if something did help I wouldn't know what it was...and wouldn't care even, as long as I'm better. But just reading your post made me want to cry, remembering all the feelings. And if we do suffer from some depression, is there any reason why???? Duh!!

    I wish you the very best, and hope you find something that works for you. This is no life at all to watch others and be able to do nothing. Actually, we're all pretty darn special people for just hanging in here and hoping for a brighter day ya! Jole

  19. TeaBisqit

    TeaBisqit Member

    Not being able to talk on the phone is the one thing no one ever understands and I've gotten seriously yelled at over by relatives and friends never understood it either. They never get that we really are too sick to speak on the phone. When you have no energy, a phone conversation can be too draining. And when the sound hurts your head, someone's voice in your ear is pure torture.

    After all these years, I can't talk on the phone much. I have one aunt that I do speak with once in awhile, but the hour long conversation is often very draining on me and I'll be trying to get off the phone at the halfway point, but I get sucked into the hour and just die.

    I can't take a ringing phone. I have the sound sensitivity really bad to the point where I will take the phone off the hook if I have to. But Comcast has done some awful thing where the off the hook noise never ends, so the only other alternative is to turn the ringer off on the phones.
  20. hannahfaid

    hannahfaid New Member

    I know when I am feeling good I try to get things done... I WILL overdo it, it needs to be done and I know I will be down a few days... REST REST REST sleep helps so much!! I slept till 2pm today If I got up any earlier, I am sure I would have been worse.. went to my first day of Curves... I have to admit, this poor muscle recovery takes a big bite!!
    my worst pain , is mopping the floor, my neck and back are very tight and tender the next day