Poll on myalgia (muscle pain)

[lansbergen]

the key authority on EBV responses in ME, actually found reduced antibody responses as a whole.

Not EBV but in the animals there was low to zero seroconversion after vacination for several virusses. Maybe that could be tested in humans.

 

[MeSci]

Not EBV but in the animals there was low to zero seroconversion after vacination for several virusses. Maybe that could be tested in humans.

What animals?

 

[lansbergen]

What animals?

The population I was observing.

 

[Mij]

I describe it as shambling with feet more apart than normal.

I do this when my legs have weakness. It helps with maintaining balance, which can be an issue too.

 

[lansbergen]

I do this when my legs have weakness. It helps with maintaining balance, which can be an issue too.

Yes, keeping balance is a factor.

 

[Sherlock]

@Sherlock I am intrigued by what you have described.

One of my clients was telling me about her husband's misfortune. All he did was turn over in bed one night - and his rotator cuff tore, requiring surgery. I do not know his full medical profile. They were religiously telling everyone they met to be careful - odd things can happen.

If not a drug induced weakness like @Gingergrrl said, or a viral induced weakness, then maybe a mast cell protease problem like I have? These days, I can grab a heavy blanket and pull it over myself and sprain my thumb. If he flushes tremendously from niacin, that's a clue pointing to mast cells.

 

[Sherlock]

Yes, @Sherlock, but it probably all depends on how much inflammation you have and how much pred you're taking. I'm thinking some of us here might have massive inflammation/immune activity (whatever you want to call it). After some breakthrough symptoms after light exercise last week, my doc upped my pred dose to 40mg, and now they're gone (but 40mg is a big does and its gonna be huge tapering off in the next few days).

Hi, Woolie. I was going to reply to your pred thread, but you seemed to only want feedback on people with CFS/ME. (I would have said that I had seen repeated tapers in normals from 60mg or even 80 mg, with no problems whatsoever . No psychological effects either.)

WBC rises quickly with those doses, to ~20. AFAIR, that's mainly from neutrophils leaving compartments such as the marrow and spleen. The neuts are less active though, hence the immune suppression. Since neuts flood into a muscle after exercise, along with macrophages, then still having PEM despite suppression of neuts might mean that macrophages are really what need suppressing. I don't know if pred affects macrophages or not.

Congrats on having found something that works for you. I'd stick with it.

 

[rosie26]

@lansbergen I am the same, I have to walk with my feet further apart, coming to a stop when walking is very un-steadying. There's a connection to the eyes with it as well - I can feel it.

 

[Woolie]

Hi, Woolie. I was going to reply to your pred thread, but you seemed to only want feedback on people with CFS/ME. (I would have said that I had seen repeated tapers in normals from 60mg or even 80 mg, with no problems whatsoever . No psychological effects either.)

WBC rises quickly with those doses, to ~20. AFAIR, that's mainly from neutrophils leaving compartments such as the marrow and spleen. The neuts are less active though, hence the immune suppression. Since neuts flood into a muscle after exercise, along with macrophages, then still having PEM despite suppression of neuts might mean that macrophages are really what need suppressing. I don't know if pred affects macrophages or not.

Congrats on having found something that works for you. I'd stick with it.

Hi @Sherlock, thanks for the info. Can you just confirm, are WBC's white blood cell counts?

 

[alex3619]

Prior to learning to pace, myalgia was my dominant symptom. Since then its become a minor symptom. I had mild PEM, mild cognitive dysfunction, and severe myalgia for some years. Now its the other way around.

 

[Vic]

I call mine the 'ME trudge'. I can hardly lift my feet and am dragging them along. That was one of the things I recognised in an Open University video of a woman with ME - she walked like I did.

EDIT - but that is due to weakness rather than stiffness.

I describe it as shambling with feet more apart than normal.

I do this when my legs have weakness. It helps with maintaining balance, which can be an issue too.

@lansbergen I am the same, I have to walk with my feet further apart, coming to a stop when walking is very un-steadying. There's a connection to the eyes with it as well - I can feel it.

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?

Hi, Woolie. I was going to reply to your pred thread, but you seemed to only want feedback on people with CFS/ME. (I would have said that I had seen repeated tapers in normals from 60mg or even 80 mg, with no problems whatsoever . No psychological effects either.)

WBC rises quickly with those doses, to ~20. AFAIR, that's mainly from neutrophils leaving compartments such as the marrow and spleen. The neuts are less active though, hence the immune suppression. Since neuts flood into a muscle after exercise, along with macrophages, then still having PEM despite suppression of neuts might mean that macrophages are really what need suppressing. I don't know if pred affects macrophages or not.

Hah, man you guys really know a lot about the biological functions. When I first heard about CFS/ME I looked into the biology a lot, but was still brain-fogged and forgot much of what I learned. Ridiculously complicated. I decided to drop trying to make sense of it.

 

[rosie26]

My cognitive symptoms in my mild years were severe enough not to be able to study anymore (1995), so I shouldn't include that symptom as mild in my 'Mild' years. Myalgia became worst at severe onset and continues.

 

[Mij]

Question for you guys/girls: do you notice a difference between each leg? Particularly a feeling of unstable shuddering?

I think this can happen if you tend to stand or lean more on your stronger leg when they both feel weak.

 

[taniaaust1]

I have put this in 'General Symptoms' to try to reduce the risk of bias that might occur if it were placed in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails'.

If you are pacing and resting very strictly so as not to get myalgia, or are unable to be active due to the severity of your illness, but you know that you would suffer this symptom if you used your muscles more, you should answer 'yes'.

Great poll and the result of 20% not having it is certainly surprising me.

Even when I are in a situation where I cant be hardly on my feet due to the OI so its harder for me to over do physically ME wise... I still can experience myalgia in my arms.. trying to scrub some laundry for less then one minute is enough to do it. I quickly have to stop due to this symptom and my arms basically like freezing up till they can hardly move due to lack of energy.

 

[Hell...Hath...No...Fury..]

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

 

[rosie26]

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.

I had trouble with my right hip joint just before severe onset and during onset, felt like bone rubbing on bone at the time. I haven't noticed one leg weaker than the other - both get the weakness.

 

[SOC]

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

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.

 

[SOC]

I've never had any muscle pain at all

Not even during PEM episodes? What kinds of symptoms do you get with PEM?

 

[Sean]

I've noticed abnormal gaits as well.

Me too. Long thought there was some important clues in that symptom.

http://www.ncbi.nlm.nih.gov/pubmed/19848558

http://www.ncbi.nlm.nih.gov/pubmed/7595641

 

[lansbergen]

felt like bone rubbing on bone at the time.

Yes, I think it is not enough fluid in the joint. Can happen in every joint. My knees were the worst, could hear them crunch.