Muscle Weakness

[tamsyn]

tamsyn thanks for that. It reminded me of my attempts at cycling and painting too funnily enough. You are right. Along with the pain and inability to hold the paintbrush up for long; there is the weakness and trembling too.

I've just summoned up the energy to hoover my carpet in the new flat. That is I find terribly hard now. And it does incur the weakness and trembling in my legs that you describe. Now I sit down and pace the whole process - but the 'weakness' does not result in my collapse: it is a feeling.

I have never been inclined to push it to the point of testing if weakness would result in an inability to continue standing; never to that degree. So I still don't know if 'weakness' is something definitive and something that can be tested for as a specific result of whatever is wrong with our muscles.

If anyone can find a published paper on ME and muscles that does point to 'weakness' I would be grateful.

Hi!
I have read several medical research papers that have run something called test-retest studies on 'normals' and on ME patients. Basically, cardiac function and muscle function are tested...the patient is exercised, then given 24 hours rest. Then the original tests are run for a second time. The 'normals' get the same scores on their tests as they did the first time. But the ME people test significantly worse on the second test -- because their bodies have not recovered from the exercise. I have also seen cognitive function tests like this too and again, patients with ME show a decline in cognitive functioning after the exercise and rest. During rest, normals recuperate -- but ME's recuperate so much more slowly.
I myself know that once I get the extreme pain and weakness in my legs, if I have to keep going, I wll get so weak that I can not get up stairs: I put my foot on the step, and push on my leg...but nothing much happens! I have to basically haul myself up by the hand rail. Yet, when I am stable (which, thank God, is most of the time now) I am able to walk my dog, garden, shop etc. But that old leg issue still makes me crash (or is part of a crash) and I end up in bed from time to time for a few days, waiting for my strength to recover.
I'm sorry I can't remember where I read those papers; likely on the prohealth.com site, in the library section.

 

[tamsyn]

I'm not sure about research, but immediately after exertion my oxygen saturation drops to a "not good" level - 95% and under. Depending on how far past my limits I go, I struggle to maintain oxygen levels for hours or days afterward. During that period, my heart rate stays very elevated to compensate for whatever causes the low oxygen, or sometimes fails to compensate and oxygen gets very low.

So maybe a pulse oximeter could help you see what's happening, both with regards to oxygen and with regards to heart rate.

My O2 saturation is low on cardiac testing too, and so is my output of blood on each contraction. On exertion, I get angina-like pain in my chest, and get breathless. After a few years of this, I developed an intermittent bundle block...a 'faulty connection' in the nerve signal between upper and lower chambers of my heart. I asked my cardiologist why a person such as myself (physically fit all my life before getting ME in my 40's), never smoked, not overweight, super-healthy diet, would develop these cardiac issues -- she said she had no idea. When I asked what she knew about links between ME and cardiac issues, she said she did not know of any links...in fact, she admitted to knowing nothing whatsoever about ME. Too bad...since there has been so much solid research done on it in America, and since ME experts state firmly that ME does cardiac damage including causing tachycardia (anothing thing that showed up on my tests.) Cardiac testing on ME patients is highly replicable and 'scientific' --it's not a subjective thing. When are medical schools going to get with the program? This was a young cardiologist!!

 

[Firestormm]

Hi!
I have read several medical research papers that have run something called test-retest studies on 'normals' and on ME patients. Basically, cardiac function and muscle function are tested...the patient is exercised, then given 24 hours rest. Then the original tests are run for a second time. The 'normals' get the same scores on their tests as they did the first time. But the ME people test significantly worse on the second test -- because their bodies have not recovered from the exercise. I have also seen cognitive function tests like this too and again, patients with ME show a decline in cognitive functioning after the exercise and rest. During rest, normals recuperate -- but ME's recuperate so much more slowly.
I myself know that once I get the extreme pain and weakness in my legs, if I have to keep going, I wll get so weak that I can not get up stairs: I put my foot on the step, and push on my leg...but nothing much happens! I have to basically haul myself up by the hand rail. Yet, when I am stable (which, thank God, is most of the time now) I am able to walk my dog, garden, shop etc. But that old leg issue still makes me crash (or is part of a crash) and I end up in bed from time to time for a few days, waiting for my strength to recover.
I'm sorry I can't remember where I read those papers; likely on the prohealth.com site, in the library section.

Thanks Tamsyn

I am aware and have read these studies that you mention; I was actually after something that I don't think has been produced because, as I said, I think 'muscle weakness' is a term we use as patients to describe the feeling we experience. It is mentioned in several criteria/primers - as I also referred to briefly - but no clinical/medical/scientific investigation has determined there to be actual muscle weakness: which is the point I was really trying to establish.

Exertion, movement etc. does leave some of us with this feeling of weakness; and some of us do find that we experience a greater difficulty, because of a lack of muscle strength perhaps, in raising objects and using them for example. But this 'strength' or lack thereof has not been quantified to my knowledge.

It is most likely that whatever is causing us to experience these problems with our muscles is leading to us feeling a 'weakness'. I totally accept and embrace that and often use the term myself. It is most probably all part and parcel of the lack of ability to produce normal muscle function.

I think - hope - that for example, Julia Newton's Muscle Gym - for exercising muscle cells - might better determine if indeed there is measurable weakness. It would be an important finding. It may be that PEM covers 'weakness' but speaking personally I think my muscles are dysfunctioning all of the time and this is exacerbated by specific exertion.

 

[tamsyn]

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 have experienced something similar to this during my worst ME period; my right leg was so weak it would start giving out, and as I walked, my right foot would sort of be dragging. This went on for about a week...a week during which I was really in full crash mode but, since I was also in the middle of moving house, could not go to bed and rest ...didn't even have a bed lol Once I was able to get rest, gradually my strength returned...but losing strength in my legs is still a sign I'm about to crash.

 

[tamsyn]

Thanks Tamsyn

I am aware and have read these studies that you mention; I was actually after something that I don't think has been produced because, as I said, I think 'muscle weakness' is a term we use as patients to describe the feeling we experience. It is mentioned in several criteria/primers - as I also referred to briefly - but no clinical/medical/scientific investigation has determined there to be actual muscle weakness: which is the point I was really trying to establish.

Exertion, movement etc. does leave some of us with this feeling of weakness; and some of us do find that we experience a greater difficulty, because of a lack of muscle strength perhaps, in raising objects and using them for example. But this 'strength' or lack thereof has not been quantified to my knowledge.

It is most likely that whatever is causing us to experience these problems with our muscles is leading to us feeling a 'weakness'. I totally accept and embrace that and often use the term myself. It is most probably all part and parcel of the lack of ability to produce normal muscle function.

I think - hope - that for example, Julia Newton's Muscle Gym - for exercising muscle cells - might better determine if indeed there is measurable weakness. It would be an important finding. It may be that PEM covers 'weakness' but speaking personally I think my muscles are dysfunctioning all of the time and this is exacerbated by specific exertion.

The difference between 'weakness' and 'stamina' is interesting. They're not quite the same thing...but pretty close since lack of stamina leads rapidly to weakness, in my personal experience. Perhaps the test-retest studies were focused on stamina. But I don't think of weakness as merely a subjective 'feeling'. When I had to do the stationary bike test for cardiac function, I was told to pedal as hard as I could to get the bike to a certain speed and then to maintain that speed for a certain length of time. I got part way there, still pedalling madly, but the bike speed started to decline. My leg muscles had started out 'strong' but then became too 'weak' to keep the bike speed up; the test had to be stopped and aborted. So this was measurable -- it was not a subjective feeling but something that the test technicians saw on the bike's control dial that they were reading numbers off of. Pedalling furiously, with all the strength I had, and yet seeing the speedometer go slower and slower was a weird feeling for me but made me realize that my 'feelings' of weakness were not subjective! It would be very interesting to have specific tests that could quantify this. My cardiac technicians just shrugged their shoulders!!

 

[tamsyn]

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!

Love this idea! I'd like to be going downhill too -- but in the good way and not the bad way!! You really nailed it for me when you said is it nerves, or heart, or muscles. I've been around and around and around that mulberry bush so many times for 14 odd years. The cardiologists' tests all show cardiac problems...but when I tell them my daily life symptoms, they say: "Oh no, these cardiac problems that showed up our tests would not cause all these symptoms of fatigue, breathlessness, chest pain, muscle pain and low stamina" (why not???) So then I go the nerve route....but if I try and talk about CNS impairment due to ME perhaps being implicated in my cardiac intermittent bundle (nerve) block,all I get is a blank look! So then I think the heart is a muscle and all my muscles are compromised so why wouldn't the heart be too...and maybe the weakness in my other muscles is also there in my heart muscles...in fact, maybe the weakness in my other muscles is BECAUSE of poor cardiac output and O2...but if I go that muscle route, I don't even know which doctor to try talking to!

 

[tamsyn]

I

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.

I'd agree that, for me, DOMS and PEMs do not feel like the same thing. Before having ME, I hiked, climbed mountains, kayaked, sailed big boats, etc. I remember the 'good pain' feeling of healthy muscle that has been given a good workout and is recovering nicely. Now, anything too energetic leads me, not so much to sore muscles, but to awful nerve pain in the muscles. This pain feels like being on fire, it feels also like red hot needles being jabbed into the deep muscles, and it feels like slow electric shock waves travelling though the muscles. It can last for days...yes, five or more. It's far worse than any 'muscle pain' I've ever experienced, and does not respond to pain killers. Not 'good pain' at all! I have no idea how it relates to things like the Kreb's (sp?) cycle, nitrous oxide build up, potassium depletion,and all those other things that happen in muscles...since this really seems more of a CNS problem. But I'm not sure why using my muscles exacerbates a CNS problem.

 

[SickOfSickness]

The difference between 'weakness' and 'stamina' is interesting. They're not quite the same thing...but pretty close since lack of stamina leads rapidly to weakness, in my personal experience. Perhaps the test-retest studies were focused on stamina. But I don't think of weakness as merely a subjective 'feeling'. When I had to do the stationary bike test for cardiac function, I was told to pedal as hard as I could to get the bike to a certain speed and then to maintain that speed for a certain length of time. I got part way there, still pedalling madly, but the bike speed started to decline. My leg muscles had started out 'strong' but then became too 'weak' to keep the bike speed up; the test had to be stopped and aborted. So this was measurable -- it was not a subjective feeling but something that the test technicians saw on the bike's control dial that they were reading numbers off of. Pedalling furiously, with all the strength I had, and yet seeing the speedometer go slower and slower was a weird feeling for me but made me realize that my 'feelings' of weakness were not subjective! It would be very interesting to have specific tests that could quantify this. My cardiac technicians just shrugged their shoulders!!

That is what happens to me. It starts fast and progresses fast.

 

[Little Bluestem]

My minerals were accidentally tested last year (don't ask ). My serum levels were high across the board, including copper, but my intracellular copper was too low to be detected.

How is intracellular copper tested?

 

[rosie26]

Firestormm

You expressed well, about the "jelly legs" it's a feeling of weakness in the legs. I have had it bad. And yet I can still walk. Like you I tried to work it out too. The muscle weakness and muscle strength. I think I too would pass a basic muscle strength test. I found this symptom hard to explain to the doctor when telling the doctor my legs are very weak, and yet I probably would pass a muscle strength test.

 

[Firestormm]

Firestormm

You expressed well, about the "jelly legs" it's a feeling of weakness in the legs. I have had it bad. And yet I can still walk. Like you I tried to work it out too. The muscle weakness and muscle strength. I think I too would pass a basic muscle strength test. I found this symptom hard to explain to the doctor when telling the doctor my legs are very weak, and yet I probably would pass a muscle strength test.

Well I don't know about you, Rosie, but here it's 3am - so good morning

You ever also experience the 'locked muscle' or stiff muscle feeling in your legs especially? It is the opposite almost of jelly legs. Can mean for instance my upper leg muscles lock; leaving me unable to walk freely. Very weird sensation. From one extreme to the other. No idea was causes either really - I know the theories - be nice one day to understand properly what is going on

 

[rosie26]

Yeahhhh Firestormm the locked leg !! Yes know what you mean. And weird it is alright. I get it at the back of leg locking that is and the front of the thigh the muscle tight above knee area. It feels peculiar alright. We sound similar. ha ha gotta laugh.

I have been wanting to comment on this thread and you expressed my symptoms better than I was able too. x

Sounds like you are up for the rest of the morning or should I say awake ! Gosh been there I think more than 1000 times now !
Have a nice warm drink and something to eat x

 

[Misfit Toy]

How is intracellular copper tested?

What I think is so funny about this is intracellular copper. We seriously are like doctor's. "My intracellular copper was too low to be detected....the fecal matter in my lower intestine says that I have SIBO and I am on the Gaps diet and the methylation protocol has mutations in the CBT aspect." Folks, I am joking...but listen to us. WHERE ARE OUR DEGREES?? We need to start treating patients. I am putting a sign up over my door and charging 5 cents like Lucy from Charlie Brown. Nope. I am not as proficient as so many on here. So many are so beyond me in light years in understanding all of this.

 

[Valentijn]

How is intracellular copper tested?

In red blood cells. The test I didn't order (but got anyhow!) looked at minerals in whole blood, serum, and intracellular. Serum tended to be high or normal, and intracellular was low in most things, though high-ish for zinc.

 

[peggy-sue]

Is the muscle weakness we describe and experience not the same thing as what the psychs call "fatigue".?
(Which I deny having.)

 

[bertiedog]

I'm not sure about research, but immediately after exertion my oxygen saturation drops to a "not good" level - 95% and under. Depending on how far past my limits I go, I struggle to maintain oxygen levels for hours or days afterward. During that period, my heart rate stays very elevated to compensate for whatever causes the low oxygen, or sometimes fails to compensate and oxygen gets very low.

So maybe a pulse oximeter could help you see what's happening, both with regards to oxygen and with regards to heart rate.

I have this too and what helps me is my oxygen concentrator which I use for up to one hour 3 times daily.

Last week I had to send it back for a service and I was so unwell for those 3 days I was without it. I felt depressed, my brain wasn't working normally, I had little energy and got a migraine on 2 days which started by 9 am each day. I felt so unwell and it brought home to me how low the oxygen drops in my cells. BTW It doesn't always show up on the pulse oximeter but I have had levels of around 94% on some occasions.

I had Autonomic Testing last year at Breakspear which showed at times I had less than 25% of the normal levels of oxygen in my cells and the only time it rose to nearly normal was after I had been lying down doing nothing for 10 minutes.

What I am still not really understanding is the cause of this oxygen depletion. Could it be the above average levels of Herpes type viruses they found. I find this hard to believe because I can feel very well in myself providing I am not pushing myself too much but I do walk every day but only for a maximum of 25 minutes at a time because after that I am completely empty in energy.

Pam

 

[Little Bluestem]

WHERE ARE OUR DEGREES??

I don't get mine until I learn how intracellular copper is tested.

 

[Little Bluestem]

Oops, looks like I need to learn how Autonomic Testing is done. bertiedog?

 

[Firestormm]

I picked up on this from another thread; had never read up on it before but am left wondering - what with the sleep study I am about to have next week - if it might account for some or all of the muscle weakness. Also, I do tend - have tended for a long time - to use stimulants to fight the 'fatigue' during the day. Upon reading this article - about Narcolepsy and Cataplexy - that I found - which is nice and easy to understand: I am wondering...

About 7 in 10 people with narcolepsy also have cataplexy. This is where you suddenly lose the strength and control in some of your muscles whilst you are awake. For example, it can mean that you suddenly nod your head, your knees may suddenly give way, you may drop something that you are holding or, in extreme cases, you may suddenly fall to the ground. Emotions such as laughter, elation and anger can trigger cataplexy. You still have awareness during the attacks. They usually last for under a minute but they can happen several times a day. Sometimes you can have twitching of your muscles during an attack and some people confuse this with epilepsy.

I took the above from this article. Interesting that Narcolepsy is now being discussed as perhaps an autoimmune condition - though incurable. Excessive day time sleepiness [tick though manageable now with rest not sleep] Sleep paralysis [tick] Hallucinations [tick though not as bad as once upon a time and usually is auditory and not visual] Disturbed sleep during the night [TICK] Automatic Behaviour [No. I really have to think about even the small easy stuff] Memory and Ability to Concentrate [TICK]....

Easy to see why sleep disorders are one of the most common reasons for misdiagnosis of ME. Well, I guess I shall have to see. Funny that they treat Narcolepsy with Modafinil - a stimulant. Nobody seems to know about what to do with or why Cataplexy happens.

Now I don't believe Cataplexy can possibly account for the pretty constant muscle aches and pains; but if they can tie-down the sleep disruption to say narcolepsy; and even rule out the epilepsy in regard to the seizures; and treatment results in some stability and better performance during the day - well I might be happy

 

[bertiedog]

With regard to sleep, for the past year I sleep nearly 7 hours every night but it hasn't made any difference to my ability to do physical stuff. My sleep is the best it has been in many years I think due to hormonal support plus methylation supplements.

Pam