Muscle and joint stiffness worsened by activity

[jnmaciuch]

Maybe his is better in the other thread, but I’m yet to get through that one properly!

I’m obviously a bit biased as the neurological explanation is something I’ve spoken about before and it just feels more satisfying than a muscular explanation to me and my experiences. That said I really get your approach of there being something which crosses systems and may be more easily testable in muscle than neurons.

I’m a bit more generally sceptical of and perhaps surprised at some of what looks like a pushback against a neurological explanation. Especially given years of focus on muscles and mitochondria and energy and no meaningful results. Maybe I’m misinterpreting the comments from some but to me the question is ‘how do these muscular or energy theories explain our symptoms’? And looking at things differently and focusing more on the neurological element seems hugely welcome.

Of course I don’t see a reason there cannot be an explanation which is in a shared system. Or an explanation that is primarily immune and neurological as some evidence seems to show, but which then spills over into other areas, like muscle, or something which is traditionally or crosses over in some way into neuromuscular territory.

I’m absolutely happy to think there might be something going on in the brain that overlaps with other more local issues—moreso I’m thinking of this as potential evidence that not all of the illness is maintained by a neural feedback loop with no peripheral pathology at all.

More specifically to this thread, is a survey with 3/4 answers supporting one position and 1/3 refuting it good questionnaire design?

I was just hoping for a quick gauge to see if it’s just me and one or two outliers experiencing any of this or if it’s more common (and assuming that people would provide more specific descriptions in the thread). I’m happy for someone else to make a more detailed poll on this if desired!

 

[jnmaciuch]

You may well be but joint crackling often comes and goes in young women. If you change your activity pattern that might well make it appear - as Andy suggested. I think people tend to mention it when doing sports just because they are worried the sport will do harm. My daughter and friends, relatives and students have often come to me with newly crackling joints for no obvious reason.

[Edit: and, to reiterate, this was something that was abnormal enough to be commented on by both my doctor and PT who work with plenty of people across age and activity levels and still thought what they were seeing was highly unusual]

Like I said before, all of it together was enough to make them shocked that I wasn’t spending my days doing intense sports—something that was exactly reiterated by another pwME and their PT on another thread, which made me curious.

 

[Utsikt]

I feel stiff and have limited range of mobility at times. And my joints crack every day. The newest one is the sternum. It freaked me out the first times.

Unrelated, I’ve always had cracking in my ankles. I can get them to pop continuously by rotating my feet. My ballet friends are envious of my natural pointe and turnout - it’s a shame it was wasted on someone with zero rythm.

 

[tuha]

I dont know if I would call it muscle stiffness but my muscles are definitely strange and weak.

I can walk 6000 steps a day but especially in my calfs I feel every day kind of muscle soreness but I think it's different from what I felt when I was healthy and I overexercised. I ask if it' s not the same feeling like by restless legs syndrome. And I have daily cramps in my calfs.

These muscles problems were always a big mystery for me. Before I was sportman and I often overexercised but the problems and feelings after overexercising in the muscles were different. So is it muscle stiffness, soreness or something else? I dont know if other patients have similar feeling especially in their calfs.

 

[Mij]

I voted "no never" but need to explain that sometimes I do feel sore and stiff after activities when I have a viral or immune event and didn't realize until after I did the activity, but mostly the next day.

In general I feel better after stretching and light activity in the morning after I get up. It gives me more energy that gets me going. I've tried to keep myself mobile throughout my ME life. If I can't then I do dry body brushing which helps with increasing circulation.

 

[jnmaciuch]

Another interesting tidbit is that malic acid, which helps me avoid PEM, relieves both of these symptoms in a way that nothing else has been able to help. It’s the only time I’m able to experience what is probably a normal level of aches and pains for someone of my age.

 

[hotblack]

I’m absolutely happy to think there might be something going on in the brain that overlaps with other more local issues

Yep, understood. I hoped my earlier comment reflected that and while I have misunderstood in the past, thanks to the explanations you’ve given I think I get your approach now and look forward to whatever you turn up.

My ballet friends are envious of my natural pointe and turnout

Same! Friends who are dancers did not appreciate when I’d turn up and copy some of their warm up exercises with seemingly zero effort.