Muscle and joint stiffness worsened by activity

[jnmaciuch]

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.

 

[OrganicChilli]

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.

 

[Kitty]

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.

 

[jnmaciuch]

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.

 

[Verity]

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.

 

[Ravn]

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...

 

[AliceLily]

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.

 

[hotblack]

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.

 

[Snoopydog1]

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 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?

 

[Snoopydog1]

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.

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.

 

[AliceLily]

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.

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.

 

[Trish]

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.

 

[Andy]

Isn't this something that inactive people, whether they have ME/CFS or not, are likely to encounter if they increase their activity?