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Knitting Equals Pleasure, Despite ME/CFS
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Muscle Weakness

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by Moxie, May 28, 2013.

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Do You Experience Significant Muscle Weakness?

  1. Yes, weakness is one of my top 3 complaints

    33 vote(s)
    67.3%
  2. I experience significant weakness, but in the scheme of things it's a minor complaint for me

    10 vote(s)
    20.4%
  3. I experience weakness only occasionally or very mildly

    6 vote(s)
    12.2%
  4. Weakness is not part of my clinical picture

    0 vote(s)
    0.0%
  1. lansbergen

    lansbergen Senior Member

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    And mine.
    Sherlock likes this.
  2. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Ahimsa, thank you! Those are interesting observations. I've never thought that I have ME because I've never had that type of pain that you describe. I will assume that your description is typical of ME.

    So what you're saying seems to indicate that it might be all a matter of the sensation of pain, without much muscle damage needing to be involved. That assumption would be strengthened if you don't get any muscle stiffness - which you didn't mention. So your pain wouldn't go away as the muscle heals itself, because there isn't actual healing going on... Maybe your pain receptors have been multiplied so much that merely the background levels of such-and-such a chemical sets them to firing constantly.

    Do you not get stiffness? Btw, have you ever had DOMS for 5 days or more? That's what I'd call DOMS in full bloom :) Typically in leg muscles, after going too far.

    I suppose there might be a 3rd variant, which is fibromylagia. Alan Light started off by studying fibromyalgia, and that's the one aspect that from the beginning made me think he might possibly be focusing on things that didn't apply to me.

    He does, however, say that various receptors work in concert. What really caught my attention was a receptor for pH called ASIC3 being involved. I have done things exercise-wise lately which I really thought were going to result in DOMS, but they didn't - not since using baking soda PWO. (PWO = post workout) Meanwhile, all the talk I've seen out in the world about bicarb involves using it pre-workout, for improved performance.

    Sorry, I don't know any more about NKs and PWO inflammation as of yet. It's even puzzling why they'd be involved... unless they arrive to finish off any muscle cells that are so damaged that it's more efficient to end them via apoptosis (orderly 'programmed cell death') rather than letting them get necrotic.

    Glad you replied.
  3. ahimsa

    ahimsa Senior Member

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    I'm happy that my observations were interesting!
    Not really, no.
    Back when I was healthy, I don't remember ever getting DOMS that lasted more than 2-3 days. Even after climbing Mt. Hood (the climb starts at about 6,000 ft, the summit is about 11,245 ft, so the altitude makes it harder) I don't remember my muscle soreness lasting longer than that. By day 3 or 4 I was always back to normal. Maybe I was a fast healer?

    Since I've been sick I've rarely been well enough to do any activity that would bring on DOMS at all! Much less 5 days worth.... But a couple of times, during good spells, I have done something vigorous enough to get the normal DOMS feeling (the soreness that I recognize from when I was healthy, not PEM muscle aches) on the very next day. I even remember saying to my husband something like, "Hey, I've got some 'good' soreness, that hardly ever happens." I wish I could remember an example but I've been sick since 1990 so it's hard to come up with one.

    My gut feel is that DOMS is different from PEM. But that's just from my personal experience, not any scientific studies.
  4. SickOfSickness

    SickOfSickness Senior Member

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    Mine may be different. It is like a temporary weakness.

    It comes on suddenly. Sometimes I am holding something very light, or not holding anything and it's the weight of my arm that is too much for the muscles. For example if I am planning to pick up something from a shelf, and raise my arm, and it might hit me then, before I pick it up. Then I would have to pull my arm back to my body because my arm starts to feel much heavier and it's too heavy.

    Sometimes it happens right after I pick up something, and it also feels difficult to place it down on a table. I guess it's locking up like you said.

    It feels strange when it happens sometimes because it doesn't make sense when I felt like picking up the light item, but quickly it feels so bad, but it's hard to move enough to put back the item.

    Sometimes it happens with something very light like a piece of paper. I think it's the gripping hand position which is hard, in that case, because that is so light weight.

    It doesn't last long. It can happen in my legs or maybe other parts, but my arms are more frequent.


    Yes that's what I get too.

    And me too with phones. It took me years to realize that the weight of the phone gets me irritable after a few minutes, because of the discomfort. It starts to feel very heavy and I just want to hang up the phone. I have a head set too. I have to, or I am distracted from the conversation.

    In general my arms are very weak.
    ahimsa and Sherlock like this.
  5. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    To get the 5-6 day DOMS, you have to do something extraordinary, like so: do squats with a weight where you can just barely do 10. Then stand there with the bar still on your shoulders, gasping for breath until you can do one more. Then resting again, going up to a total of twenty, gasping between each one. It's hard to walk immediately after, because of rubber legs.

    Now you've made me realize that is probably creating a lot of oxygen debt in the leg muscles. It's looking more and more like hypoxia is a key factor, so avoiding hypoxia is likely a very good strategy whenever in the grip of CFS (and maybe/probably ME).

    Once again, I can have something in my head for a long time but only when talking it out do associations become quickly obvious. I'd hadn't quite connected 5-6 day DOMS with the hypoxia, having figured it was due to the strenuousness. But doing many heavy singles in a row doesn't give DOMS like that, not even close.

    Have you tried lifting a dumbbell for maybe 3-5 reps and seeing how that goes?
  6. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    This might spark some thought in those talking about getting depleted of energy:
    if you watch a 100 meter race (like e.g. in the Olympics), it often seems like one person speeds up at the end to win. But in reality, it's relative because the winner is actually slowing down less than the others.

    ATP lasts about 10 seconds at maximum effort, or less. Being conditioned to exercise, or not, could likely change that figure but I don't know to what degree.
  7. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    During my first year, I would get PEM to where 30 seconds of exercise would make me stay in bed for a day or two, hardly able and not wanting to move, with bad dizziness upon standing. But not the pain as you describe.
  8. SickOfSickness

    SickOfSickness Senior Member

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    I had to read those posts quickly about DOMS and PEM. I agree that PEM is not the same as the good ache after exercise. It is strange but I get both but they don't completely overlap, so that is when the difference is noticed.
    ahimsa and Sherlock like this.
  9. taniaaust1

    taniaaust1 Senior Member

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    I personally wouldnt call PEM any form of DOMS (oh no another new word to remember!).

    I know from how I was before I got ME/CFS that it is quite possible for even healthies to have DOMS and have a constant hurt for days after a very intense exercise session.. (say a healthy who dont exercise much does a 13 hr hike throu hills the day before, they then will be feeling soreness not just when the muscles are used but as a constant soreness for days).

    With exercise and ME.. I find that one can feel the same kind of like lactate acid build up in the muscles as one can get with DOMS (but of cause with instead an extremely minimum amount of exercise) but PEM includes FAR MORE then just that feeling as it doesnt just affect the muscles.. PEM for me has an also all over my body affect and it doesnt necessarily for me even have to include my muscles (thou it often does, but not always). eg a healthy with DOMS a day or so later will not be tired anymore..but just sore, no exhaustion or tiredness. They may be stiff too but that will be it.
    ahimsa, SickOfSickness and Sherlock like this.
  10. Valentijn

    Valentijn Activity Level: 3

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    DOMS will only affect the muscles over-used, and only cause discomfort when using them again. Someone might feel fine while sitting on the couch, but then standing up will engage the leg muscles and the pain hits.

    PEM is whole body, regardless of which muscles were used, and there's usually aches even when not using the muscles during the PEM episode. Of course, DOMS can easily accompany PEM.
    ahimsa and Sherlock like this.
  11. lansbergen

    lansbergen Senior Member

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    I am pretty sure hypoxia is part of it but for me it is more than that. .
    Sherlock likes this.
  12. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    I had the same thing last week, being unintentionally too long... but in the sun. That set me to thinking that sunburn is a good model for inflammation in general. It's of course very easy to directly observe, unlike most things internal except for swelling. It's also delayed in onset. Once you've got it, it's made worse by more exposure to what caused it, but also touch and rubbing.

    Heat (like a hot shower) makes sunburn worse, but heat makes DOMS better, probably by promoting relaxation and increased circulation to take out the bad biochemicals and bring in the good biochemicals. The same for rubbing.

    But back to DOMS, I will point out that when you've got 5-6 day DOMS, you can feel that soreness all the time. Still, the lack of stiffness of PEM-style is a major difference.
  13. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    I've had PEM without pain, maybe there should be another term added to indicate the post exercise pain in ME, aside from the malaise.

    One thing with the PEM that I had was that I wouldn't sleep for a lot of it, just lay there with eyes open or closed like a rag doll. That was similar to the poisoned-feeling, but with actual tiredness added. Since heavy exercise in normals results in leaky gut (starting with heat shock proteins, which really should be named stress-induced proteins), maybe leaky gut gets very easily created/exascerbated in PWCs/PWMEs by exercising.


    More musing: I also remember once reading a marathoner describing how she took 6 weeks to recover from a race. That instantly stuck in my mind because I've always been slow to recover. Taking 6 weeks would seem to involve something way beyond just replenishment of glycogen and minerals, and doing muscle repair, etc. I'd also guess that most marathoners wouldn't take so long? But maybe marathoners who ended up here did take longer, that might be a partial predictor. I'd guess there is a spectrum in ability to recover in all people, but some (like us here) went over some line - which could be from the bad cold, but how would that affect recovery ability months or years down the road? Is inablity to recover mostly because recovery needs to turn inflammation on, but very necessarily needs to turn inflammtation off at some point and we don't? That thinking is what leads me to try taking some anti-inflammatory agent (with a fairly short half-life) roughly 5-10 hours after exercise. I'd take it right after the exercise if I mainly wanted to avoid bad exercise effects, but that might also blunt most of the exercise benefit. (There are even stories out recently about statins, with their anti-inflammatory effects, blunting the benefit from endurance exercise.)



    Related to that: everybody has probably seen how professional sports teams have available a tub for ice baths. Anybody with bad PEM-pain try ice baths after minimal exercise? How about a volunteer with significant PEM-pain to do some bicep curls (one arm only, so the opposite arm is a control) and then use an ice pack on the bicep? :) I'll try it myself; but with taking baking soda right after exercise, I think I recover now better than ever anyway.
  14. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Alan Light talks about lactic acid, pH (on its own, aside from lactic acid) and ATP sensing by neurons.

    There's the hypoxia, but also ischemia which prevents harmful metabolities from being flushed away. (Lots of strength lifters use a once-a-week heavy training day, and then days later a light day to 'flush the muscles'.)

    There might also be reperfusion injury involved in CFS/ME, such injury being infamous in stroke and heart attack in normals. Take a rat and tie off an artery to the brain. The ischemia/hypoxia creates certain compounds in the brain tissue. Most of the stroke damage occurs only when you untie the artery and the restored blood flow brings in oxygen that reacts with those new compounds. Iron based ROS are among the most damaging, and iron is plentiful in the myoglobin in red meat. Give the rat antioxidants before the procedure, and stroke damaged is reduced around 70%. So maybe antioxidants before exercise in PWCs would also be helpful.


    There is also that fascinating bit about how TLR4s on monocytes get triggered not only by bacterial LPS, but also by heat shock proteins (which means exercise sets them off, regardless of heat). Macrophages on scavenger duty infiltrate muscles after exercise. I'd guess that Langerhans cells, the monocyte derivatives that reside in the skin on sentry duty, do the same in sunburn. Dendritic cells, which used to be thought as being descendents of monocytes, might so the same in sunburn.So anti-inflammatories would come into play, which ones would have to be determined.
  15. lansbergen

    lansbergen Senior Member

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    Sherlock, ever thought about what will happen when SOD2 is impaired?
  16. taniaaust1

    taniaaust1 Senior Member

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    PEM pain to me includes far more kinds of pain then just muscle pain and hence more then just trying to stick an icepack onto something for relief
    (in my case ice dont work for my painful muscles but heat helps), PEM pain for me.. its headache pain, its joint pain and also can be like moving arthritis pain etc. You are underestimating what PEM is for most of us by thinking its just pain in a muscle that you can just put ice onto..
    .....................


    That marathoner.. may of had what Ive heard refered to in sports as "burn out".. they work so hard training leading up to a marathon too.. pushing themselves.. and after a race if they've really burnt themselves out.. they can need a break from training etc to recover (many sports people have taken breaks for a while due to that). I personally wouldnt compare that with ME as ME isnt an illness just caused due to burning ourselves out.. something else is going on which then leads to us easily burning out and more one could say.
  17. Artstu

    Artstu Senior Member

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    I skipped right through the thread. At 9 months it is very early days for your illness. If you do want to cycle again I would recommend an electric bicycle, they allow you to make good progress for much less effort, it'll still take it out of you, but the boost from engaging in something you enjoy does give you a lift, and physical progress can be made to some degree.
  18. meandthecat

    meandthecat

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    It's good to see all the weird muscle malfunctions I've encountered described by others as sometimes I just don't believe it happened. I'm 6 ft, 240lbs and built like a prop forward, I used to wrestle trees and win. At my worst I could barely crawl upstairs, one stair at a time; I couldn't open a jar lid or rise from a chair unaided.

    I reckon that DHEA really helped, I now use 7-Keto. acetyl L Carnitine works really well for stamina and methyl B 12 seems to underpin everything. I am very active within well defined boundaries and have recovered my strength if not my stamina.

    It was galling to be carrying around so much 'muscle' which didn't seem to work and it seems to have been the Carnitine that has enabled me to bring it back and build more.

    What is profound is the treatment that I receive from other people; when I was weak I was trashed by everyone. Now it is much better; Doctors are nice to me now, it may have something to do with my size and the 'make my day' look. If they hadn't been so horrible to me in the past I might almost feel sorry for them.
  19. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    No, I wasn't suggesting using ice to try and relieve PEM pain. (Icing is also useless for relieving DOMS in normals.)

    What I was suggesting is that using ice immediately after exercise is worth a try, in an effort to keep the inflammation from developing. Immediately, as in without delay after a set of dumbbell curls in one arm. Ice + anti-inflammatory + antioxidant, all to the end of preventing PEM in that arm. It's an easy experiement.

    Note: NSAIDS leads to leaky gut, even aspirin. Ibuprofen might be the least damaging to the gut.
  20. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    NSAIDS (including aspirin) by themselves can lead to leaky gut.

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