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Muscle Weakness

Do You Experience Significant Muscle Weakness?

  • Yes, weakness is one of my top 3 complaints

    Votes: 38 69.1%
  • I experience significant weakness, but in the scheme of things it's a minor complaint for me

    Votes: 10 18.2%
  • I experience weakness only occasionally or very mildly

    Votes: 7 12.7%
  • Weakness is not part of my clinical picture

    Votes: 0 0.0%

  • Total voters
    55

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Wow, excellent thread, Moxie. I get all of these effects, but only in episodes that might last a few days or weeks. Then I'm normal again.

Just this morning, I was reading through the Newton paper, "Abnormalities in pH handling by peripheral muscle
and potential regulation by the autonomic nervous system in chronic fatigue syndrome". But right away, I had to wonder why they're not mentioning the motor end plates, aka neuromuscular junction. That's where the signal from the motor neuron enters the myocyte. As an off-the-cuff theory, this can all fit together, maybe like this. at least in my case:

The muscle fibers get into some pathological condition (inflammation is involved, big surprise) where they are very susceptible to injury. Yes, I get that phone thing, too, just a few weeks ago. The phone is so light but I got some tearing right in the middle of the bicep from holding the phone (on speakerphone, arm bent at 90 degrees) for many minutes.

During this period, I also experienced a surprising loss of strength (as in lifting a heavy object one time). That almost never happens to me. So maybe the motor end plates are operating in their defensive fashion, keeping the muscle from exerting too much force so as to prevent injury - like keeping strands in a violin bow from popping. So some plates won't conduct the signal. Holding a phone circumvents that tactic, which is meant for heavy weight, because ony a few fibers contract and so the injury occurs anyway - but just in a few fibers.

Tendons are also involved. I've had this new, weird condition where my fingers won't work right. Some having swelling. There is pain in some of them when I try to bend them fully. Immune chemicals at work, this came out of the blue ceating some pathological condition. So my tendons also need to be protected by keeping muscles from exerting full force.

But then conversely, I do have good stamina now. Two days ago, I went on an hour bike ride, including 20 minutes straight up a grade, with surprisingly no problem. So there's appparently no fuel problem involved.

I also always have poor lung power, since getting sick - but I was never great at that, even pre-CFS.

(I haven't had full-fledged PEM in years.)

Excellent thread. Moxie, and I'm thankful to everyone who posted their own experience.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Btw, motor end plates also give out in normals just from using the muscle for a while. E.g., if you do bicep curls over and over, eventually you can't use that muscle again until it rests. ut it's not the muscle that's exhausted, if you hooked up electrostimulation the muscle fibers would still fire.

Then after rest, the plates work again. But in CFS, maybe they don't recover so fast.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
I too get muscle weakness and have voted in your poll. But I also get what I can best describe as "ligament weakness" and I can distinguish between the two. Many moons ago I had dislocated my pelvis in childbirth (a fact which De Meirleir connects to my ME). When I am at a low point, like right now, my pelvic ligaments really ache. Does anyone else get this?
Maybe like joint aches from the flu, caused by immiue chemicals. Plus, that tends to show up most in previous injuries, as you say.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
Always the same leg, or is it seemingly random?


Interestingly enough - mine was also the left leg - or the left arm. Never the right (that I could detect, anyway). Like I said - it was happening for at least two years before I deciphered what was happening and the oh-so-barely-there warning sensation. For the first two years, I would just start to fall and catch myself with no knowledge of what had happened - other than certain I hadn't tripped and certain that it wasn't uneven ground.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Always the same leg, or is it seemingly random?

For me it was always the left leg. I could not tell when it was going to happen but I do remember it generally happened when I was walking for at least a minute. That means it rarely happened in my house (very short trips from room to room). It was more likely to happen in a shopping mall, in a parking lot, or inside an office building. Or it might happen when crossing my street to get the mail.

I don't remember any warning before it happened.

Sherlock, it's interesting that you can relate to the issues with holding the phone. Thanks for sharing that.

It's great that you've improved to the point where you can do long bike rides including uphill grades. (I'm worried that might sound wrong -- there's no tone of voice in messages and someone once badly misinterpreted a message that I posted -- but I'm genuinely happy for ANYONE out there who has improved, for whatever reason. There's so much pain in this world. If someone out there is in less pain/fatigue/etc. then I'm sincerely happy for them.).

But I still have trouble just walking when the ground is not either flat or going downhill. I don't know which part of my body is the limiting factor. (heart? muscles? nerves?) I just know that even when I don't consciously notice that the grade has changed (very subtle change from flat to uphill) I start to slow down without even realizing it (e.g., I fall behind my husband's pace and that's when I notice it). It seems ridiculous that flat vs. slight uphill should make as much difference as it does but there it is.

I have often joked that I wish the world was like one of those M. C. Escher prints -- then I could just choose the direction that is always going downhill! :D
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
I am convinced in my case it is the nerves not releasing enough acetylcholine caused by lack of PrPc.
I'll have to look into that. I do remember that temporary exhaustion of acetylcholine itself is not responsible for getting to muscle failure, in normals. But Lansbergen, I do know that I always (i.e., before CFS) had slower recovery (say, between sets in weightlifting) than average.

let's see... prPC = prion protein, but not the infamous prion.

"Although several signaling pathways triggered by PrPC have been identified, little is known regarding how intracellular signaling is activated by PrPC following its interaction with extracellular ligands" So it complexes.
http://www.jbc.org/content/285/47/36542.full
"Role of α7 Nicotinic Acetylcholine Receptor in Calcium Signaling Induced by Prion Protein Interaction with Stress-inducible Protein 1"

I remember a thread a few weeks ago about nicotine and glutamate, and wondereed why they hadn't tried MSG as a quick and easy test. I tried "Accent", the MSG food additive, and found it did nothing for me. (There is apaper showing that ingested MSG does raise glutamate.)
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Interestingly enough - mine was also the left leg - or the left arm. Never the right (that I could detect, anyway). Like I said - it was happening for at least two years before I deciphered what was happening and the oh-so-barely-there warning sensation. For the first two years, I would just start to fall and catch myself with no knowledge of what had happened - other than certain I hadn't tripped and certain that it wasn't uneven ground.
Penny, have you tried a blood pressure cuff on both arms? You can do one after the other, but I've also seen a person having a doc and nurse do both arms at the exact same time. A difference of 10 points is something to investigate. You can do both ankles, too.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
For me it was always the left leg. I could not tell when it was going to happen but I do remember it generally happened when I was walking for at least a minute. That means it rarely happened in my house (very short trips from room to room). It was more likely to happen in a shopping mall, in a parking lot, or inside an office building. Or it might happen when crossing my street to get the mail.

I don't remember any warning before it happened.

Sherlock, it's interesting that you can relate to the issues with holding the phone. Thanks for sharing that.
ahimsa, I later remembed why my biceps reacted that way. About 2 weeks prior, I had been doing dumbbell curls. That night, I did the "going for the burn" thing, but it felt off and I could tell that I was getting small tears. So I stopped. It seems that I've never fully recovered since, and I can just barely feel that when I try to feel it, too.

I've also had burning eyes for months, inflammation. I think this inflammation made the muscle fibers susceptible to injury. Plus the constant inflammation makes me not heal.

We know that we need inflammation to recover, and also to improve. E.g., a person who takes NSAIDS won't get much improvement in muscle size or strength from weightlifting. The same is probably true for statins with their anti-inflammatory effect. But then you also need the inflammation to eventually stop.

It's good to talk out these things, rather than just turn it over in my own head :)

It's great that you've improved to the point where you can do long bike rides including uphill grades. (I'm worried that might sound wrong --
no, no. no... not one bit :)
there's no tone of voice in messages and someone once badly misinterpreted a message that I posted -- but I'm genuinely happy for ANYONE out there who has improved, for whatever reason. There's so much pain in this world. If someone out there is in less pain/fatigue/etc. then I'm sincerely happy for them.).

But I still have trouble just walking when the ground is not either flat or going downhill. I don't know which part of my body is the limiting factor. (heart? muscles? nerves?) I just know that even when I don't consciously notice that the grade has changed (very subtle change from flat to uphill) I start to slow down without even realizing it (e.g., I fall behind my husband's pace and that's when I notice it). It seems ridiculous that flat vs. slight uphill should make as much difference as it does but there it is.
Maybe walking on the flat puts you on the very edge of your psysiologic limit?

With me, I can change from day to day, so that gives me multiple perspectives on what is happening internally.

I have often joked that I wish the world was like one of those M. C. Escher prints -- then I could just choose the direction that is always going downhill! :D
And yet running downhill is more taxing on the muscles, the eccentric contractions in resisting gravity can cause more microdamage and DOMS. Are your Achilles tendons okay?
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
ahimsa, I later remembed why my biceps reacted that way. About 2 weeks prior, I had been doing dumbbell curls. That night, I did the "going for the burn" thing, but it felt off and I could tell that I was getting small tears. So I stopped. It seems that I've never fully recovered since, and I can just barely feel that when I try to feel it, too.
Well, it's looking like hypoxia might be the trigger - so in this example of biceps, it's a small muscle so that won't lead to being out of breath or getting much of a rapid heartbeat. But, by doing it with intensity and keeping time between sets short, you generate hypoxia just in that muscle.

[Edit: and that might also very well be the case in holding a phone, which is isometric just as ahimsa said.]
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
PennyIA ahimsa Here's another account of not being able to move:
http://forums.phoenixrising.me/inde...me-conference-the-light-study.381/#post-10822
I had arrived home form work one night (several yrs ago) & sat down in my coat & was unable to move. Couldn't lift my arm. Like you say it's not about being tired & deciding not to move/clap, it's about being unable to move.
Though not quite the same as either of yours, which are on one side only.

Also a thread, again being not identical: http://forums.phoenixrising.me/index.php?threads/lost-ability-to-move-legs-or-walk.144/
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Maybe walking on the flat puts you on the very edge of your physiologic limit?
It could be.

And yet running downhill is more taxing on the muscles, the eccentric contractions in resisting gravity can cause more microdamage and DOMS. Are your Achilles tendons okay?

Well, I think one key point is that I'm not running! (not even jogging) :D

But seriously, I don't have any trouble with walking downhill or even walking down a couple flights of stairs. I guess that I don't have bad knees or bad tendons or anything like that. I'm not doing this very often, of course. But it has never caused me any pain. (I know nothing about microdamage so I can't help you there)

For example, my cardiologist's office is on the 4th floor. When I have an appointment then I often take the elevator on the way up then then take the stairs on the way down. I figure that walking downstairs is at least movement so it's better for than doing nothing.

Also, due to my OI (Orthostatic Intolerance), it's much easier to walk downstairs than stand and wait for the elevator, not to mention the expectation of standing while inside the elevator. On bad days I'll take the elevator both ways. But I use my folding cane/seat to sit down instead of standing (standing is one of the worst things for me).
 
Messages
2,565
Location
US
I am convinced in my case it is the nerves not releasing enough acetylcholine caused by lack of PrPc.


I was tried on medication that increases the acetylcholine to the muscles. The medication can help a lot with the stamina problem I have. Above I wrote about how I feel weak and bad after very small amounts of activity (sometimes only 30 seconds of activity). The medication (pyridostigmine) prevents that, however, it only works if I'm not having much PEM.

I'm thinking the medication only redirects acetylcholine and can't help me produce more. I don't know if that is right medically, it just seems right to me. I figure that becomes the limiting factor on days when I have PEM. Because of too much exertion the previous day or days, usually. Sometimes PEM is from overexertion on the same day.

The medication lasts less than 3 hours and I couldn't usually get the effect for more than 5 hours in a day. I don't use it because of the side effects.
 

lansbergen

Senior Member
Messages
2,512
pyridostigmine is an acetylcholinesterase inhibitor.

I use an nicotine receptor agonist and a positiove allosteric modulator.
 
Messages
2,565
Location
US
I have some other problem, which I think is related to the muscle weakness. It happens all the time. I don't understand what is happening. It seems like some muscles get overly tense and painful, but the opposing muscles feel too weak to move. So I am sort of frozen in a painful position until I feel ready to make those muscles work.

(This thing with painful positions might be only because I have Fibromyalgia too. A lot of CFS patients don't have Fibro.)
 
Messages
76
Location
VA
I have some other problem, which I think is related to the muscle weakness. It happens all the time. I don't understand what is happening. It seems like some muscles get overly tense and painful, but the opposing muscles feel too weak to move. So I am sort of frozen in a painful position until I feel ready to make those muscles work.

(This thing with painful positions might be only because I have Fibromyalgia too. A lot of CFS patients don't have Fibro.)
I do something similar to this freezing you describe, but only in my hands, so far. It's like they lock up, usually when I am holding something heavy(ish) in the same position too long, like a bowl of cereal. I'll take take the object away with my other hand, and it takes a few moments before my fingers will unlock and be useful again. It's not as painful as a true cramp, but it's uncomfortable. I don't know if that's the same phenomenon you experience or not.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I couldnt vote in this poll as muscle weakness (I also have issues with muscle stamina) is a major symptom of mine but it probably rates at 4th or 5th in my huge symptom list. I seem to have muscle issues from at least 3 different things going on

But I also have briefer times of weakness where I can usually recover in minutes, but the weakness happens faster each time. Like I can do something for 90 seconds, rest 30 seconds, 70 seconds, rest 30, 50 seconds, etc.

Me too or even quicker then that with some things. Say Im trying to scrub some clothes, I'll last only about 45 seconds till my arm muscles die and I can hardly move them.. I wait for them to recover 10-15 seconds then can scrub some more but it will be far less next time round say 20 seconds then I'll be having to rest again 15 seconds etc. I can only think that there must be a burn out of the energy to the muscle (mito dysfunction?) which can be build but up after a short time, Normal peoples bodies can replace energy as fast as they use it, but many of us just cant.

Im sure that issue would be testable with the right tests.

Penny said:
Have any of you experienced sudden onset, sudden relief - muscle 'failure'? I.e., I'll be walking along just fine, but then my left leg muscle goes weak first - then totally fails to support my weight. Since i'm walking, I'm usually stumbling, but my OTHER leg can catch me. But next step seems fine. I couldn't figure out why I kept having trouble walking for the longest time - until it happened in one of my arms once when I was trying to lift myself out of bed. Since the one arm failed and the other one was working fine, it was obvious that it was related to the muscles not being able to 'hold' a position. After that, when it happened while walking I was able to notice the weakness when it would come on and be able to stop - support myself through the other leg, and then resume walking when full-strength returned. Never lasts more than 30 seconds .... my doctor gave me the 'you are insane' look when I brought it up. But I KNOW what I feel happening and now that I can feel it oncoming, I've been able to test my theory - and I lose all strength in the affected limb when it occurs.​

I can get sudden onset muscle failure too. This can happen in just one or both of my legs at the same too, I see this as a neurological issue going on and at times it's seemed to be very connected with my POTS. I can at times get only a second of warning of feeling of weakness in the body part before it completely just gives way, like no support there at all sending me crashing to the ground.. so my whole body weight goes into the fall. Last time I had that happen, I d raised my arms while paying something at a counter which triggered it of causing me to crash to the floor HARD, there is no resistance in my legs when it happens to try to slow a fall (note.. raising arms is a POTS trigger).

My legs when they have this symptom. I still cant stand even with 2 people either side of me supporting most of my body weight (its like having the legs of a baby trying to support an adult body.. its impossible). Note with this issue its only a body part affected (usually legs) and the rest of my body will be okay, I usually feel only slightly generally tired before it occurs eg at the point where Im only "just starting" to push mysel, no real issue thou but know I'll need to sit down soon and then BAM.. I get this. Its like someone just kicked your legs out from under you or took away a leg or legs.

If you get this symptom, I highly suggest you check out to make sure you dont have POTS (thou Ive read nothing on it being connected with POTS as I said in my case it does seem to have a connection there).

ahimsa said:
I can lift a bag of groceries (reasonably heavy) from the trunk and take it into the house, no problem. But if have to hold the phone receiver (reasonably light) to my ear for more than a minute or two then that is very hard for me. And if I hold it for 8-10 minutes then I will get a muscle ache (some time later, not immediately) in my deltoid on that arm

Same here.. thou in my case the muscle ache which comes in, comes in when Im still holding the phone after 5-10mins and isnt a delayed reaction after the event. I end up figeting all over the place.. trying to make my arms comfortable and switching the phone hand to hand trying to give each arm enough rest till it gets the point where I just HAVE to hang up due to getting too much arm discomfort (which brings then my arms quick relief).

Constant use of a muscle really affects me even if the object is light like a phone (lactate acid buildup?? but then I dont think that's it either as the pain goes usually as soon as I stop the activity and rest the body part ) but to quickly lift something heavy Im usually fine.

.......

I are thou weak at times thou too (maybe an affect of the POTS?) eg a few weeks ago I almost got stuck in a public toilet during a shopping trip as my arms that day were too weak to open the door.. I ended up getting it open just a wee bit and then had to use my whole body to push the gap open more to get throu it as my arms were too weak to push the door.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Musing: With PEM starting at very roughly around 24 hours, that would coincide generally with the arrival of macrophages in the muscle. That's true with DOMS, and PEM might very well be just DOMS intensified as well as being DOMS that's triggered with little effort.

So why doesn't PEM subside as DOMS does? That might very well be because NKs are recruited to muscle as part of the inflammatory response in normals, but aren't involved so much, in terms of numbers or activity, in CFS. Something paradoxical might be going on.

http://www.ncbi.nlm.nih.gov/pubmed/8164530
"NK cell response to physical activity: possible mechanisms of action."
Natural killer (NK) cells are highly influenced by physical exercise. The possible important mechanisms behind exercise-induced changes in NK cell function are cytokines, hyperthermia, and stress hormones, including catecholamines, growth hormone, cortisol, and beta-endorphins. Infusion studies mimicking stress hormone levels in blood during exercise indicate that increased plasma-adrenaline accounts for at least part of the exercise-induced modulation of NK cell function. During moderate as well as severe acute exercise, the NK cell activity is enhanced, but severe exercise is followed by immunodepression, at least in part caused by prostaglandins. Elite athletes have at rest elevated NK cell activity. However, due to frequent severe exercise the NK cell function is often temporarily severely depressed. It is suggested that during the time of immunodepression microorganisms, especially virus, invade the host, whereby infections can be established. However, in those who perform regular moderate exercise the immune system will often be temporarily enhanced and this will protect these from infections.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Musing: With PEM starting at very roughly around 24 hours, that would coincide generally with the arrival of macrophages in the muscle. That's true with DOMS, and PEM might very well be just DOMS intensified as well as being DOMS that's triggered with little effort.

Hi Sherlock! I finally looked up DOMS and found this on wikipedia - http://en.wikipedia.org/wiki/Delayed_onset_muscle_soreness - is that the DOMS you're talking about? I hope I've got that right or else the rest of this won't make sense, LOL! :rolleyes:

Anyway, I think that's the same thing as what I would call ordinary muscle soreness. It's what happens the day or two after an extra hard workout, right? I never knew that there was a medical name for it but I'm happy to use DOMS to save typing.

I'm curious about your theory so I'll just add my two cents in case they are helpful.

Let's say that the PEM in patients with ME is just a slightly different type of DOMS. Something is broken in people with ME and so this same muscle problem happens in people with ME after only minimal effort.

First of all, wouldn't the pain feel quite similar? As someone who used to be very active, and who would occasionally get DOMS after an extra hard workout (raised the weight level, did a new exercise which used different muscles, or anything like that), I can tell you that my current muscle pain from PEM feels very different from DOMS. The PEM muscle pain feels more like a tetanus shot kind of ache. Or maybe even a typhoid shot, which hurts even more. It does not feel at all like the muscle soreness that I used to have.

I was 29 when I got sick. I had lifted weights, hiked, done aerobics classes, used the stairmaster, etc. I even climbed Mt. Hood twice. I was used to "normal" muscle soreness. The muscle pain that I have now (less now than at my initial onset, but that's partly from knowing/avoiding what hurts) feels quite different.

Second of all, with DOMS, the muscles mostly do not ache when they are at rest. From the wikipedia entry (see link above) for DOMS:
The pain is typically felt only when the muscle is stretched, contracted or put under pressure, not when it is at rest.
This agrees with my experience of muscle soreness back when I was healthy. My muscles would ache when I'd get up but as long as I was sitting down, not moving around, then they didn't hurt.

But with PEM the muscle ache is constant. The muscle ache is about the same whether I'm using the muscle or resting the muscle.

So, if there is some theory that links DOMS and PEMS, then it should account for not only muscle pain after much less activity but also the different type of pain and the fact that the muscles hurt even at rest, not just when in use. At least, in my own situation (not sure what type of muscle aches others get).

So does the NK cell response that you posted about cover these issues? (sorry but I'm not able to connect all the dots...)