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.

 

[Evergreen]

Hi all!

I'm hoping to gauge how common it is to experience muscle and joint stiffness in ME/CFS. For me it is pretty constant at a low-level (especially in my neck/shoulders after waking up), but will become much worse during PEM. It's always worst in the muscle groups/joints that were used in activity.

I mentioned my experience of this in this thread, but wanted to hear from others since it might be a strong clue against purely neurological pathology. It was commented on by a doctor, PT, and acupuncturist, which makes me pretty confident it's not just perceptual. And the crackling sound both me and my doctor/PT could hear when handling my ankles is not easily explained by a neurological issue. Both noticed this mostly around my legs and ankles on days after I had been on my feet for longer than usual. My PT and doctor were shocked that I was mostly sedentary because they've only seen similar phenomena in athletes or in the very elderly (I was 19 when this first appeared).

Anyways, I've heard a couple people mention something similar acrosss the forum and thought it might be useful to collect anecdotes.

Muscle stiffness yes. Joint stiffness - no-ish, but I make sure I regain/retain range of movement by doing a ton of stretching throughout the day. Neck and legs would seize up without that. Arms too.

Muscle pain yes. Joint pain yes. What I think might be tendon insertion pain yes.

Muscle stiffness, muscle pain and joint pain all worsen with activity. I got new, significant joint pain with GET that the rheumy initially thought was an inflammatory arthritis but when ENA panel was normal got dismissed. The joint pain disappeared when I had to stop GET. (Reared its head again later as I got more severe.)

I have always been comically crackly/crunchy, right from childhood, whether doing loads of exercise or sedentary. Doctors and physios always express surprise, but it has never been suggested as meaning anything bad. But it is most extreme in the joints I'm having most pain in, so there's that, and I've never heard an explanation for why that would be.

When my knees were subluxing more regularly, they were extremely crunchy, moreso than they are now. Doctors seemed to really enjoy listening to them. They're less entertaining now, though still crackly. My shoulders are very crunchy now. My right hip cracks loudly every time I stand up, and when I was healthy enough to regularly be standing up when people were sitting beside me, they would often comment, because it cracked right beside their ear. The left one isn't as loud. I haven't noticed any change in crackliness/crunchiness with ME/CFS.

 

[shak8]

My response to @jmnachiuch:

(I have severe FM x29 yr duration, now age >70, formerly a dancer, hiker)

There might be some overlap between ME/CFS and FM in muscle pain origin and pain maintenance causes,

FM people typically initially present with base of the neck and trapezius pain (indeed 4 tender points for research purposes are located there).

Muscles in regions affected by FM (which can spread over time: I now have entire swaths of my upper and mid-back, sides of upper arms, forearms and shins and thighs that increase their pain signals after a wee bit too much activity of any sort (and emotional stimulation, sensory stimulation---sunlight, light traffic, noise, humans). I probably can be more physically active (I don't have any OI symptoms other than dizzy feeling gait) than most mild to moderate ME sufferers (info gleaned from reading posters on this site).

That FM symptoms overlap with ME symptoms is evident to me as to the activities that induce PEM in ME, cause increased pain, exhaustion, and cognitive dysfunction in FM, with the exception that I can brush my teeth without concern about energy. Though I don't permanently worse w/bouts of FM "flares" (akin to PEM), my pain symptom intensity waxes and wanes over months, years, decades.

Using my leg muscles (thighs especially but also my right shin) during a very brief uphill (30 ft of an incline of 60% and a subsequent very slow walk, with frequent rest stops to effect a 20 minute walk in a beautiful oak woods, a calming positive place causes instant reactivation of heavy fatigue in legs, and later delayed pain that day and the day after: all of this perception despite 6 years of doing the same thing 3x a week, and now only 2 days a week due to thighs requiring two days of recovery. I don't know if the muscle pain is because of muscle use or the organismal effort and excitement to drive 10 minutes to the park and experience some delights there. In short, cause and effect escape me.

It's as though my thigh muscles have not forgotten the sensation of slight overuse (such as in the aftermath of a ballet class 50 years ago--the creeping pain and tightness, only partially relieved by massage and heat). This is FM muscle pain.

 

[Turtle]

Definitely muscle stiffnes after use.
After grocery shopping and after having a sitting rest for a while, the muscles I used, feel too short; as if using shrinks the muscles.
The first steps are really awful, mostly the upper legs and thighs.
No crackly sounds.
In my mind there has to be a heck of an explanation by a neurologist to convince me it's just neurological.
Maybe even more than convincing JE it's also in the muscles.

 

[V.R.T.]

Ever since ME onset the amount of clicking and cracking in joints increased significantly, most notably in wrists and elbows. my right elbow even started to sometimess freeze when my arm was half extended and i had to crack it out of that position. My toe joints also began to sporadically dislocate.

i do have less soreness and stiffness and the rest now I'm severe bizarrely, which I think is because I don't use them as much. Although when I crash badly all sorts of muscle groups start to burn.

 

[poetinsf]

Any chance it is a comorbidity? FMS is a common comorbidity, for example. Muscle stiffness and pain vaguely sounds like FMS. If not FMS, something similar?

 

[Evergreen]

I mentioned my experience of this in this thread, but wanted to hear from others since it might be a strong clue against purely neurological pathology.

I don't understand this bit. Parkinson's causes stiffness. MS causes muscle stiffness. Why could muscle stiffness in ME/CFS not be neurological?

 

[Utsikt]

I don't understand this bit. Parkinson's causes stiffness. MS causes muscle stiffness. Why could muscle stiffness in ME/CFS not be neurological?

Huntington does as well, especially later stages. And that’s certainly not due to the lack of movement.

 

[jnmaciuch]

I don't understand this bit. Parkinson's causes stiffness. MS causes muscle stiffness. Why could muscle stiffness in ME/CFS not be neurological?

Joint stiffness alongside muscle stiffness in the same areas would be hard to explain neurologically.

Also, as far as I’m aware in both those examples, the neurological muscle stiffness is not predictably triggered by use of a muscle group/joint in activity

 

[Evergreen]

Joint stiffness alongside muscle stiffness in the same areas would be hard to explain neurologically

I'm not sure. People with PD have joint stiffness too. And people with MS have joint stiffness secondary to their muscle stiffness.

 

[jnmaciuch]

Any chance it is a comorbidity? FMS is a common comorbidity, for example. Muscle stiffness and pain vaguely sounds like FMS. If not FMS, something similar?

Maybe, though all of it appeared at the same time as my ME/CFS symptoms, and like I mentioned earlier with the malic acid, things that tend to help me with PEM help with these symptoms as well.

 

[jnmaciuch]

I'm not sure. People with PD have joint stiffness too. And people with MS have joint stiffness secondary to their muscle stiffness.

When I spoke with neuroscience experts at my university my understanding was that in both cases, joint “rigidity” specifically would be following from muscle rigidity and difficultly controlling joints with those muscles.

In my case, I’m going off of what my doctor and PT said, who both have experience with people with neurological disorders. They did not detect rigidity consistent with spasming or other neurological issues, it was much more akin to stiffness in overused or injured joints and muscle groups that they saw in athletes. And the fact that it was always worst in the joints/muscles I used recently was a hint that it was local as well.

 

[jnmaciuch]

Ever since ME onset the amount of clicking and cracking in joints increased significantly, most notably in wrists and elbows.

Me as well! It was like one minute I was a 19 year-old well-oiled machine and a few months later I was a walking bag of pop rocks

 

[Evergreen]

When I spoke with neuroscience experts at my university my understanding was that in both cases, joint “rigidity” specifically would be following from muscle rigidity and difficultly controlling joints with those muscles.

In my case, I’m going off of what my doctor and PT said, who both have experience with people with neurological disorders. They did not detect rigidity consistent with spasming or other neurological issues, it was much more akin to stiffness in overused or injured joints and muscle groups that they saw in athletes. And the fact that it was always worst in the joints/muscles I used recently was a hint that it was local as well.

Fair enough. But then I'm not sure what's new - we know we have muscle and joint symptoms, that we feel like we've been exercising when we haven't been or feel disproportionate effects of activity on muscles and joints (I certainly feel that way), and indeed in at least some studies, we can see that we're not responding normally e.g. Jones et al. 2011. So is the thing you haven't come across the cracking? As a long-term cracker/cruncher, I'm not sure you'll find out much. Clinicians like it because they can hear it, but when it comes down to it, they don't think it means anything useful. Whether they're right or not is another question.