Poll on myalgia (muscle pain)

Do you have significantly worse and/or disabling and/or more-frequent myalgia than before ME/CFS?

  • Yes

    Votes: 83 78.3%
  • No

    Votes: 23 21.7%

  • Total voters
    106
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For me, that symptom completely cleared up with antivirals -- anti-herpetics, in particular. I wonder if that kind of skin sensitivity isn't an effect of one of the herpes class virEBV, HHV6, HSV, VZV. VZV might be the culprit in that case since it's known to infect nerves.
Interesting! I had EBV at start of ME, had VZV in form of chicken pox as a child. Makes sense why that symptom was so bad in the early days.
 

MeSci

ME/CFS since 1995; activity level 6?
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I've noticed abnormal gaits as well. It was one of the first things I noticed in myself that was very wrong. Both of my feet would excessively turn to the right and my right leg has always been weaker than my left. Just before I came down with the chronic fatigue my right hip would shudder whenever I landed on that foot.

Question for you guys/girls: do you notice a difference between each leg? Particularly a feeling of unstable shuddering?
When I was a child I was sent for remedial classes because when I walked I 'threw' one of my feet - I think it was the right one. I think the classes were probably a waste of time as they couldn't correct the underlying problem, which I think may have been a neuro problem resulting from a severe case of chickenpox which also seems to have led to a unilateral facial paralysis (Bell's palsy). I see someone has referred to herpes viruses later - what a busy and interesting thread this has become!

I have occasionally had a 'shudder' in a leg, but not paid it much attention as I get all sorts of twitches/myoclonus.

I have always had rather an awkward gait, and have looked with envy at people who can walk elegantly!
 

MeSci

ME/CFS since 1995; activity level 6?
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In the early days myalgia was extremely severe. During the first two years of being bedridden, every inch of muscle from head to foot was excruciating but on top of this every joint hurt too and also my skin (i say skin but its maybe just beneath the skin rather than outer skin itself)

When bedridden even the weight of a single blanket was very painful.

After crawling to the toilet if my mam dragged me back to the bedroom by clasping her arms under my armpits and pulling i'd be sobbing all the way. Dragging me by my ankles was less painful (apart from carpet burns)

Muscle and skin pain is greatly managed now through strict resting and electric blanket and only fully flares up during PEM, though my calf muscles hurt most of the time (maybe because my feet bend completely flat when lying down instead of being upright but not sure)

The skin/under skin pain can sometimes be more restrictive than deeper muscle pain as it means that clothes hurt a lot, thankfully because i live alone i can do without clothes on those days if its not too cold lol
My skin is very tender sometimes, including my scalp. I can also recall substantial pain when someone has lifted me or held me up by gripping under my armpits, but I can't for the life of me think when that could have been.
 

MeSci

ME/CFS since 1995; activity level 6?
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I had this same kind of "skin pain" earlier in the illness. I agree that it made wearing clothes very uncomfortable. Anything that tightened against the skin -- waistbands, elastic anything -- was difficult to tolerate. I took to wearing dresses that hung loose from the shoulders to minimize clothing rubbing against skin.

For me, that symptom completely cleared up with antivirals -- anti-herpetics, in particular. I wonder if that kind of skin sensitivity isn't an effect of one of the herpes class viruses -- EBV, HHV6, HSV, VZV. VZV might be the culprit in that case since it's known to infect nerves.
I have sometimes had skin that gets deeply furrowed by anything tight, or a full shopping bag carried at my elbow. That can be quite painful. I can't be comfortable in tight clothes.

Interesting thought about VZV, as I had this badly as a child, and also a facial paralysis that I think followed on from it.
 

Mij

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I can no longer wear heels. The highest I can wear now is 2 inches and it has to be a thick heel or wedge and on a good day. I wore heels all the time when I was well, loved them. I didn't realize how much we used our calf and leg muscles when wearing heels until I got sick. Every obstacle counts, even walking in snow uses different muscles and can make my walks that much more tiring on my legs.
 

lansbergen

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Anybody watched their gait between flares? When I did I noticed I did not land on my heels, roll over the footsole and push forward with my toes but rather land on the whole foot and not push with my toes.
 

Sidereal

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I had this same kind of "skin pain" earlier in the illness. I agree that it made wearing clothes very uncomfortable. Anything that tightened against the skin -- waistbands, elastic anything -- was difficult to tolerate. I took to wearing dresses that hung loose from the shoulders to minimize clothing rubbing against skin.

For me, that symptom completely cleared up with antivirals -- anti-herpetics, in particular. I wonder if that kind of skin sensitivity isn't an effect of one of the herpes class viruses -- EBV, HHV6, HSV, VZV. VZV might be the culprit in that case since it's known to infect nerves.
You're onto something here. I get skin pain when VZV is flaring and acyclovir helps.
 

Mij

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@Sherlock yes . I notice the right inner heel side of my thick house sandals are worn more than the left. When I'm preparing food and standing for any length of time I must be leaning more on my right leg without realizing because it's the strongest.
 

Sherlock

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Sometimes there was a feeling as though something was inflamed all around the inside of my skul
I've had this every minute of every day for six years, and never before that. I somehow assumed that almost everybody did.

I think you mentioned muscle trembling after exertion somewhere. In normals, after really taxing exercise, that happens when the body is searching by trial and error for which muscle fiber bundles to use - ones that aren't worn out.

Here's an animation of how muscle is arranged anatomically:
http://blausen.com/Muscular.html#

upload_2015-2-25_14-13-21.png


There is the smallest unit which gets wrapped in connective tissue, then a bunch of those get wrapped together, then a bunch of the bunches get wrapped and so on. Muscle cells have more than one nuclei, and there are spare nuclei (satellite cells) waiting just outside each muscle cell for use when needed.

Here's a torn muscle fiber (a single cell):


The membrane (sarcolemma ) is intact, though that can rupture by itself. Each end of the tear will send across filaments to the other side - that's how repair begins, like building a rope bridge across a ravine. If an entire muscle, like a bicep, gets torn then it kind of pulls up like a window shade.
 

MeSci

ME/CFS since 1995; activity level 6?
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I think you mentioned muscle trembling after exertion somewhere. In normals, after really taxing exercise, that happens when the body is searching by trial and error for which muscle fiber bundles to use - ones that aren't worn out.
Tremor and twitching (fasciculations) can also be due to too much cholinergic activity or electrolyte deficiency/imbalance. I had violent, Parkinson's-like tremor of my arms when I had severe hyponatraemia, but have also found that these can be relieved or reduced by taking anticholinergics like diphenhydramine or chlorphenamine.
 

MeSci

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I can no longer wear heels. The highest I can wear now is 2 inches and it has to be a thick heel or wedge and on a good day. I wore heels all the time when I was well, loved them. I didn't realize how much we used our calf and leg muscles when wearing heels until I got sick. Every obstacle counts, even walking in snow uses different muscles and can make my walks that much more tiring on my legs.
I stopped wearing high heels years before getting ME - couldn't see the point of being uncomfortable. I think they look - and sound (like a trotting pony!) - silly actually. :lol: Even a one-inch heel feels weird now.
 

Mij

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@MeSci I've always been more comfortable wearing at least a 1.5 inch heel because it takes the strain off my back and helps with my balance. If I'm too flat I feel as though I'm falling backwards.

Oh, and I used to love the clicking sound of my heels, I would purposely walk harder to make louder noise. :D
 

MeSci

ME/CFS since 1995; activity level 6?
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@MeSci I've always been more comfortable wearing at least a 1.5 inch heel because it takes the strain off my back and helps with my balance. If I'm too flat I feel as though I'm falling backwards.

Oh, and I used to love the clicking sound of my heels, I would purposely walk harder to make louder noise. :D
I used to find it uncomfortable switching to flatties - or bare feet - after wearing heels. It made my calf muscles too short so that I had to walk on tiptoe. In fact, I have often had the urge to walk on tiptoe even since giving up heels. It can be a sign of autism, and I am borderline Asperger's. But nowadays it only seems to happen when I have PEM. I find that interesting and possibly significant, as Asperger's seems to be relatively common among ME sufferers, and both conditions seem to have a significant involvement of gut problems, which may be at least partly causative, at least in some of us.

I hate noisy shoes - people stare at you. I prefer to creep around. :D
 

Mij

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@MeSci yes, my good friend has a son who is autistic and he walks on his toes all the time. Interesting, I also walk on my toes when I feel PEM or if my legs are just tired. I thought it was because it helped my balance by pushing my body forward? Or it took pressure off my calves? I"ll have to figure out why that is. Interesting.
 

MeSci

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@MeSci yes, my good friend has a son who is autistic and he walks on his toes all the time. Interesting, I also walk on my toes when I feel PEM or if my legs are just tired. I thought it was because it helped my balance by pushing my body forward? Or it took pressure off my calves? I"ll have to figure out why that is. Interesting.
Maybe it's to do with calf-muscle shortening or tightness. Another possibility may be biochemical; e.g. see this abstract on autistic 'nervous habits' and tryptophan depletion.
 

Mij

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@MeSci my tryptophan levels were normal on my tests. But I found this, it could apply to a dysfunctional vestibular balance problem. This has always been a huge/debilitating issue for me since becoming ill. My onset was an acute vertigo attack.

http://www.autism.com/symptoms_toe_walking

Toe walking is quite common in young children, age 3 and younger; but toe walking, especially in children 5 years and older, is often associated with neurological immaturity. Many parents and professionals are not aware of the various interventions used to treat toe walking. The following interventions are listed from least to most invasive.

Physical exercises are sometimes used to stretch out the tendon in order to reduce toe walking, but this treatment has had minimal success.
A dysfunctional vestibular system, a common problem in autism, may be responsible for toe walking. The vestibular system provides the brain with feedback regarding body motion and position. It may be possible to reduce or eliminate toe walking by providing the person with therapeutic vestibular stimulation (e.g., being swung on a glider swing).
Toe walking may be directly or indirectly related to a visual-vestibular problem. I have conducted several research studies with Melvin Kaplan, O.D. at the Center for Visual Management in Tarrytown, New York. While conducting these studies, I observed four individuals who were toe walkers. In each case, their toe walking was eliminated within seconds after the child began wearing prism lenses.