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Leg shaking

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Hi guys

There is one symptom of mine I cant get my head around, and to some extent it preceded me getting ME/CFS.
Before i got sick i would often get uncontrollable abdominal shakes when doing sit-ups. I still get that now, but also when i elevate my legs quite high when standing. Im starting to think that it could be due to some neural miscommunication, because my leg muscles are not too weak to be elevated, and neither are my abdominals.

Anyone else with this symptom? I also have fasciculations in the leg, and moreso after exertion.
 

Dechi

Senior Member
Messages
1,454
I have something similar, which causes muscle weakness. It started in the legs three years ago, but now it's any muscle used for more than 10 seconds or so, even my jaw muscles. I call it the " lactic acid " effect, but without the pain. It have been tested by a neurologist for muscle impairment but my muscles are fine. After reading a lot about the mitochondria problems with ME patients, I think it has to do with the energy production process ( lack of ATP and inefficient ATP reproduction).

Whenever you feel this sensation is a signal you are overdoing it and you should immediately stop what you're doing, when possible. Pacing is of the utmost importance and staying uder the threshold means avoiding symptoms as much as you can (sorry if tou already know that).
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Yes, I get the shakiness immediately when trying to hold a muscle contraction. It didn't happen during my long period of remission (with regular moderate exercise) so I assumed, perhaps wrongly, its come on through deconditioning.

That said, I have also noticed a variable but quite marked muscle weakness over the years. It's most obvious in the legs, on a good day I can bound up the stairs (i'm an impatient sort :)), on a bad day I'll literally have to drag myself up them using my arms to help.
 

Dechi

Senior Member
Messages
1,454
@ryan31337 I am interested to know more about your story because We have this symptom in common. We're you ever in a wheelchair because of your muscle weakness ? Can you manage to work despite of it ? And do you do muscle training ? I am trying to go back to weight lifting but don't want to jeopardize what little progress I have made so far, although this muscle weakness unfortunately doesn't seem to want to improve, although I have started exercising more (walking and biking).

Oh, and do you have pain from it ? I don't. I have been sick for 3 years, but mostly 18 months.

Thanks for sharing if you feel like it.
 

Invisible Woman

Senior Member
Messages
1,267
Yes, I get this. In fact, even gentle muscle use can trigger it.

Things like driving a manual car will cause it in my left leg and left hand (right hand drive vehicles here). If I overuse my hands then it will happen in the arms and hands making the use of cutlery, or writing, a bit of a challenge.

When it happens it usually means that I've pushed that set of muscles too far and there will be payback (including pain). If I carry on once I've noticed it then I will experience sudden muscle weakness or even temporary failure - so if I'm standing, for example, my leg will suddenly give way. Or if I'm holding something I'll drop it.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Yes, I get the shakiness immediately when trying to hold a muscle contraction. It didn't happen during my long period of remission (with regular moderate exercise) so I assumed, perhaps wrongly, its come on through deconditioning.

That said, I have also noticed a variable but quite marked muscle weakness over the years. It's most obvious in the legs, on a good day I can bound up the stairs (i'm an impatient sort :)), on a bad day I'll literally have to drag myself up them using my arms to help.

Interesting! Sounds the same. I have noticed some muscle waste in my upper legs, but I guess thats understandable all things considered.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
@ryan31337 I am interested to know more about your story because We have this symptom in common. We're you ever in a wheelchair because of your muscle weakness ? Can you manage to work despite of it ? And do you do muscle training ? I am trying to go back to weight lifting but don't want to jeopardize what little progress I have made so far, although this muscle weakness unfortunately doesn't seem to want to improve, although I have started exercising more (walking and biking).

Oh, and do you have pain from it ? I don't. I have been sick for 3 years, but mostly 18 months.

Thanks for sharing if you feel like it.

Hi again Dechi

I don`t really experience muscle weakness, like, i can still do loads of pushups and situps, but I won`t feel great afterwards. Therefore the occasional shaking (on muscle contraction), is a bit perplexing to me.
 

Dechi

Senior Member
Messages
1,454
@Marky90 Not even that lactic acid feeling ? For me it's the same weakness as when having contracted a muscle really hard, like doing leg press at your maximum, but without the pain. Good for you if you don't have it. Domyou experience pain ? I don't.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
@Marky90 Not even that lactic acid feeling ? For me it's the same weakness as when having contracted a muscle really hard, like doing leg press at your maximum, but without the pain. Good for you if you don't have it. Domyou experience pain ? I don't.

no pain here either, a bit lactic acid, but nothing extraordinary!

yes same here
 

Strawberry

Senior Member
Messages
2,100
Location
Seattle, WA USA
Hi @Marky90 I have had the unexplainable shaky muscles since late teens. I eventually had to quit working out (in my late 20s) due to it. Now I can't even lift 3 pound weights or I get shakes and muscle spasm also. I hate it. One by one, I had to give up my favorite things. Snow skiing, water skiing, kayaking, seadoo... Now all I have to do is stand for 2 minutes and I am shaking! It isn't fair.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
I frequently notice shakes either from low blood sugar (easily proven if I eat and it goes away) - or when I'm in a relapse or declining towards a relapse that occurs when I'm trying to do something (using the muscles in question)- and it does not go away when eating (hence not tied to low blood sugar).

I don't have these same symptoms when my other symptoms lesson. Nor when I'm climbing out of a relapse. It's the first sign I usually get that tells me that my worsened symptoms might not be short-term and that I need to take it more seriously and be more aggressive about my pacing.

I've also noticed (usually during relapse again) - that I often get sudden onset muscle weakness when I'm either walking (using my legs and one gives out) or trying to raise myself up (arms are pushing and one just releases)... but this doesn't last more than a few microseconds ... just enough for me to stumble and fall or drop myself to one side.
 

Dechi

Senior Member
Messages
1,454
I also have fasciculations in the leg, and moreso after exertion.

I forgot to say, I also have fasciculations (just learned a new word, thanks) in the legs after exercising. In the posterior side of both legs, to be precise. It lasts about 3-4 minutes, starting as soon as I sit down to relax.

Do you have a formal ME/CFS diagnosis ?
 

Strawberry

Senior Member
Messages
2,100
Location
Seattle, WA USA
The muscles in my face fasciculate when I use muscles in other parts of my body. Anyone else experience this?
I've had that from strenuous exercise. I also got it from a "spoon" massage, where they run a spoon edge down the muscles to do some health benefit. I reacted horribly to it and had muscle fasciculations and spasms for several weeks. Sorry about the bad explanation, I don't know what it is called, or what benefit it was to provide.
 

Strawberry

Senior Member
Messages
2,100
Location
Seattle, WA USA
Okay, this thread has my brain just overflowing with all the memories of having to give up sports one by one from shaky legs. So now I must ask @Marky90 (or anyone) if you know how this would work with this new paper of Dr Naviaux? I had to give up snow skiing, water skiing, and weight lifting before I ever got the chronic sick part. Now you have my brain wondering how my current state of muscles could relate back to that? My legs start to shake now within one to two minutes of standing only. I'm so weak now its ridiculous. Could this be the same thing but magnified over the years? I've been calling it orthostatic intolerance. Maybe it is, but maybe its both.

Oh good grief, now I did it. I just looked up a picture of me on my Seadoo. It was taken only 5 years ago. And of course my legs probably were shaking horribly when I got out of the water that day. They always do. Now I can barely walk and stand!??

Scuse me while I go cry for a minute...

(oh, for a timeline, I think it was 1988 when I gave up snow skiing, probably 92 when I had to give up weight lifting, mid 90s when I gave up water skiing)
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi guys,

@Marky90 - forgot to say I had regular, persistent fasciculation (limbs and face) post exercise. I recall we have similar issues with orthostatic hypertension too.

@Dechi - No wheelchair, at worst the weakness just slows me right down and makes stairs difficult. It usually coincides with breathlessness. Currently I can work for 2-3 hours a day (desk job), any more than that and I end up over-stimulated/exhausted, which appears to trigger insomnia/migraine & overall worsening of autonomic function. I believe some of this is mediated through inadvertent hyperventilation (deep, slow over-breathing) - I appear to be firmly in the hyperadrenergic hypocapnic POTS camp & have a lot less capacity if I have to be upright.

In terms of pain, I get what I'd describe as a type of neuralgia, a throbbing that starts in the ankles, appearing when tired (end of long day/first thing in the morning) & is improved by sleep. This was my first symptom alongside frequent migraine & fatigue, 21 years ago. It is also exactly the same pain I get in prodromal stages of infection...

Right now I see my limitation as primarily dysautonomia/migraine. I have ME and will suffer from PEM, but currently the dysautonomia/migraine makes it very difficult to 'do' enough to trigger the swollen lymph nodes, sore throat, days of malaise etc. I think my tolerance for exercise/PEM is quite good by ME standards and I spent a decade firmly in the 'mild' ME category, in between more severe spells of dysautonomia/migraine. I gather from your other posts you are similar with good exercise capacity. However, one thing that always very reliably gave me full-on PEM was weight lifting, so go very easy! :)
 
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