Muscle and joint stiffness worsened by activity

Do you experience muscle and joint stiffness triggered or worsened by activity?

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jnmaciuch

jnmaciuch

Senior Member (Voting Rights)
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.
 
I think so? I'm not sure if stiffness is the right word, but sometimes my neck and shoulders can be somewhat painful when I'm in PEM. It clears up within a day and I mostly feel it in the morning. It's unrelated to the muscle groups used though because I usually get PEM from screen time or walking. I've never experienced a crackling sound.
 
I've never experienced joint stiffness that I could attribute to ME/CFS.

The day after using my muscles they are a little stiff, but not in a way typical of overactivity. It feels more as if the tiny fibres can't relax. More than anything, they burn like hell as soon as I relax/disengage them.

I have abnormal muscle flaccidity, especially after eating carbohydrates (after a sugary snack I sometimes move as if I'm extremely drunk). I think it's unlikely to be ME/CFS, though.

ETA: no crackling that I can detect.
 
The crackling was most noticeable after a day of being forced to be on my feet for hours—I had the appointment the next day and was in bad PEM (forced myself to go to get my medications). The sound is not a constant feature but I can definitely feel some cracking when I move the stiff joints. Just mention it because the fact that it was audible to me and my doctor makes me pretty certain it’s not just the feeling of stiffness.
 
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It is so mild that I hadn’t thought about it explicitly before, but I definitely do get stiffness with PEM sometimes. I don’t think I have it much outside of PEM.

I also get the feeling of not being able to relax my muscles that @Kitty mentioned, but it’s a separate phenomenon from the stiffness for me.
 
No joint stiffness

No crackling

Muscles...hm. Something happens but wouldn’t call it stiffness, more tension or inability to fully relax the muscles even when otherwise feeling completely relaxed. Years ago a physio commented on it. It’s there almost all the time at a low level but gets noticeably worse after exertion, mostly in the muscles used (I think, haven’t been paying close attention)

On rare and totally unpredictable occasions – though never during PEM - I get a couple of hours when all my muscles fully relax. Bliss. But no matter how much attention I pay to that wonderful sensation in the hope of conjuring it up again later, it never works, so much for mindfulness and brain retraining...
 
I don't think I have muscle stiffness except for sore neck and shoulder that can feel taunt. I have felt a stiffness in my hands and fingers when I have overused them playing a game on the net and can get PEM from that.

One thing that has always bothered me though is not being able to tone my muscles. Every time I have tried I get a bad PEM and have to stop. So I am not able to get anywhere near toned muscles. It is strange that when I feel my lower leg muscles they feel like I have some muscle at the back. Maybe that area doesn't trigger PEM as badly as the butt, thigh and upper arm area.
 
Severely affected and difficult to say tbh because not very physically active, I’d say no. Maybe if I was more active? Maybe ‘it’s complicated’ would be better as an answer. But it’s not something I’d say is noticeable or limiting currently. There’s can be a sort of pain or tightness perhaps, but it doesn’t feel like the muscular stiffness you describe. And definitely no new/different cracking or stiff joints as described.
 
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jnmaciuch said:
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.
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I definitely fit this pattern to the extent that if I keep on pushing myself my right hip will give way which stops me immediately. Other times I have had my left thigh give way when walking my dog but probably not in a fit state to be doing this.

It was never as bad when I was younger but now I am 77 it’s a lot harder to deal with but my muscles have been a big problem for me for over 25 years with this illness. I therefore cannot believe it’s a neurological issue.

I believe there was a professor Newton from Newcastle university who did tests on muscles in a Petri dish with healthy controls v ME patients and things changed in a negative way. She presented her findings at an InvestinME conference many years ago but maybe her findings were never replicated?
 
AliceLily said:
I don't think I have muscle stiffness except for sore neck and shoulder that can feel taunt. I have felt a stiffness in my hands and fingers when I have overused them playing a game on the net and can get PEM from that.

One thing that has always bothered me though is not being able to tone my muscles. Every time I have tried I get a bad PEM and have to stop. So I am not able to get anywhere near toned muscles. It is strange that when I feel my lower leg muscles they feel like I have some muscle at the back. Maybe that area doesn't trigger PEM as badly as the butt, thigh and upper arm area.
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I also have problems with my neck and shoulders not helped by being a chronic migraine sufferer too. I have a good tiger balm cream I buy on line and I find it helpful. When I rub the cream into these muscles they are extremely painful.
 
Snoopydog1 said:
I also have problems with my neck and shoulders not helped by being a chronic migraine sufferer too. I have a good tiger balm cream I buy on line and I find it helpful. When I rub the cream into these muscles they are extremely painful.
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Yes, I get severe headaches too. I never know whether to call mine migraine. It's been a long time since I had tiger balm in the cupboard. I can't remember whether the hot or cold came first with it now. Lol.
 
No, I don't think so, it's more increasing pain and weakness in my muscles as I use them and afterwards. Possibly some stiffness across the shoulder and neck after using my arms a lot, but even there it's pain that predominates.
 
jnmaciuch said:
since it might be a strong clue against purely neurological pathology.
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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.

More specifically to this thread, is a survey with 3/4 answers supporting one position and 1/3 refuting it good questionnaire design? ;)
 
Crackling occurs in tendon and joint compartments in two contexts. It is not related to muscle.

Bony or cartilaginous cracking or grating occurs in old people and others with destructive arthritis.

Soft tissue crackling is a sign of healthy tissue and is extremely common in young women who most frequently mention it to me in the context of sports, worried that it might be abnormal. It occurs when the free fluid content of a synovial compartment is minimal (i.e. normal) and significant negative pressures can occur on movement with cracking when soft tissue are sucked into new positions. In pathological synovial structures with increased free fluid cracking is not a feature.

When people report stiffness in muscles and joints they usually mean discomfort on movement, as maybe in DOMS. Joints can also be stiff in the unrelated sense of having limited range of movement due to tissue swelling. The joint moves normally up to a certain point and then stops - the classic case being a rheumatoid patient being unable to hide their fingernails on fist closure. But people tend not to report this as "stiffness", although in RA it goes along with discomfort stiffness.
 
Andy said:
Isn't this something that inactive people, whether they have ME/CFS or not, are likely to encounter if they increase their activity?
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It’s something that happens consistently to me even if I’m doing a level of walking that I do quite often
 
Jonathan Edwards said:
I can see that but cracking is a sign of healthy tissue.
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I’m describing something that never occurred before my illness when I was much more active

[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]
 
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jnmaciuch said:
I’m describing something that never occurred before my illness when I was much more active
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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.
 
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