the muscles around my knees - worse when I am bad

[snowathlete]

When I am at my worst, when I overdo it (like today: a hospital appointment, then a parents induction at my daughter's new school), I feel I have an increase in some kind of systemic inflammation in my body, the most noticable effect of that is noticable in my legs; in the muscles around my knees. I would almost say it is my knees, but I think it is more accurate to say it is the muscles surrounding, rather than the joint itself. So all my leg muscles, but much worse at the knee ends of those muscles.
This is a symptom I've had for a while, but has been worse the last six months plus.

My muscles there feel tired, fatigued, weak, almost switched "off," but more than that...they are giving off some kind of signal to my brain about what's going on there, but it's hard to articulate what that signal is. It's not quite pain, but tired/fatigued/weak etc. seem like inadequate terms.

Does this match with anyone else? I am trying to figure out if this is the ME/CFS or something else, perhaps part of my colitis.

 

[Tammy]

I get knee pain on and off.............and like you have a hard time telling whether or not it is from muscles, joint......sometimes it even feels like bone pain.

 

[lemonworld]

I struggle a lot with my knees too. Sometimes it feels like my knees and ankles is just going to give under me. But the worst is the knee pain. I actually havent had it in many months, but got it back really serverely today, after having some really bad days health ways. I always see a connection with either overdoing it, or just my body being in some kind of reaction, and the pain in my knees.

I usually describe it as ice-cubes in my knees, is it like that for you too? I feel like it's in the sceleton.. but i'm not sure. I also get it in my anckes and hips. I'm really curious if anyone have any theories about what it is and what causes it, or when you experience it!

 

[zzz]

Does this match with anyone else?

Yes, I had the exact same thing for many months. Daily use of nebulized magnesium got rid of it. I'd been taking plenty of oral magnesium for years, but it never made a difference.

Muscle and muscle-related pain in general is often a sign of magnesium deficiency in our illness, and can usually be helped with high intensity magnesium therapy.

 

[lansbergen]

Does this match with anyone else? I am trying to figure out if this is the ME/CFS or something else, perhaps part of my colitis.

Normal symptom for me during flares and I do not have colitis as far as I know.

 

[Sidereal]

I have this symptom during PEM.

 

[snowathlete]

Thanks for the replies everyone. I'm not sure mine is really 'pain' as such, it's certainly not as you described your symptom @lemonworld - as far as I would go in comparing it to pain would be to describe it as a dead leg, like when someone punches you in the muscle.

 

[Helen]

Hi @snowathlete ,

I had the same symptoms as you before I had IV antibiotics for my Lyme infection. Now I am even able to to do some very light muscle exercises without having the feeling that some "substance" is running out. I even considered Myastenia gravis before, but it didn´t match the whole picture. The inflammation is still there but my doctor thinks it will go away by the time and some specific treatment. FWIW.

 

[Valentijn]

@lemonworld - as far as I would go in comparing it to pain would be to describe it as a dead leg, like when someone punches you in the muscle.

I've had a major muscle in one leg stop working, after my first ME death-march through an airport. My other leg worked properly, and the other muscles in the affected leg also worked. But the thigh muscle I needed to use to lift my right leg was completely non-responsive for about an hour.

I couldn't get up or walk, which was somewhat disconcerting since it was the first time that had happened to me, I was traveling alone, and the airplane was up in the air by the time I realized that the muscle had stopped responding.

 

[Helen]

I've had a major muscle in one leg stop working, after my first ME death-march through an airport. My other leg worked properly, and the other muscles in the affected leg also worked. But the thigh muscle I needed to use to lift my right leg was completely non-responsive for about an hour.

I couldn't get up or walk, which was somewhat disconcerting since it was the first time that had happened to me, I was traveling alone, and the airplane was up in the air by the time I realized that the muscle had stopped responding.

I also had this experience quite often before the IV treatment, which I posted about earlier. I had to use crutches sometimes, but often forgot them in different places as the muscle strength was back to "normal" or rather the actual base-line, and I didn´t need them any longer. As the loss of muscle strength is totally gone I refer this to my Lyme infection that now is so much better, finger crossed. I also had sensory loss in different areas that are unusual when compared to neurological diseases, with some exceptions. With Lyme it is often seen, according to my ME and Lyme specialist.

 

[Valentijn]

I only had it happen once. It was pre-Lyme treatment, but since it was just the once, I can't be confident that mine was due to Lyme, or resolved due to treatment. But it's interesting to know about your Lyme connection - do you know if that's a somewhat common symptom of it?

 

[worldbackwards]

Does this match with anyone else?

Yeah, I get that, one of the first things I got when I started to get muscle weakness. I think they and the neck get most pressure on them so they go first.

 

[Helen]

I only had it happen once. It was pre-Lyme treatment, but since it was just the once, I can't be confident that mine was due to Lyme, or resolved due to treatment. But it's interesting to know about your Lyme connection - do you know if that's a somewhat common symptom of it?

Yes, muscle weakness is often described with Lyme, but I haven´t seen this kind of more "acute" and severe muscle weakness that comes and goes mentioned. As neurological symptoms can vary with Lyme due to the pathology with Lyme bacterias affecting both cranial and peripheral nerves, I think the symptom should be quite logical.

 

[maryb]

I had this come on out of the blue, I had scans, MRI, x-rays etc. Found nothing, then I read about the Lyme bacteria and the connection with the synovial fluid in the knee. Lots of Lyme patients report different knee problems. Makes sense for me, not sure if you were diagnosed with Lyme @snowathlete

 

[snowathlete]

I had this come on out of the blue, I had scans, MRI, x-rays etc. Found nothing, then I read about the Lyme bacteria and the connection with the synovial fluid in the knee. Lots of Lyme patients report different knee problems. Makes sense for me, not sure if you were diagnosed with Lyme @snowathlete

KDM diagnosed me with possible Lyme. I was not fully convinced I have it. I haven't had IV abx, it would be very difficult to arrange and I am not keen to take abx again after the oral abx destroyed my gut flora causing the ulcerative colitis. If not for that I might have found a way of trying IV.

 

[maryb]

Benefit of IV abx is it bypasses the gut. Sorry you weren't able to try it.

 

[snowathlete]

Benefit of IV abx is it bypasses the gut. Sorry you weren't able to try it.

Not so sure, I read that IV abx also get into the gut in high doses.

 

[maryb]

Well I would presume it does get into the gut at some stage, for me oral abx absolutely kill me but on IV I had no problem at all.

 

[panckage]

@snowathlete I get something similar. I think its mostly my knees and lower back that get weak. I have trouble bending over and my posture gets really bad. I've been keen of strengthening those parts of my body when I am able to. It helps, but only so much

 

[Dufresne]

Yes, I had the exact same thing for many months. Daily use of nebulized magnesium got rid of it. I'd been taking plenty of oral magnesium for years, but it never made a difference.

Muscle and muscle-related pain in general is often a sign of magnesium deficiency in our illness, and can usually be helped with high intensity magnesium therapy.

I've had pain in the tendons just below my elbows from overuse, however it only ever occurred when my energy was low. Cheney offers a possible explanation claiming hyaluronic acid isn't able to do its job repairing tissues because of the ME/CFS energy deficiency.

Magnesium used to help my pains as well, as did a number of other treatments Cheney proposed to address the underlying energy problem.