Temporary or Permanent Muscular damage?

[ChrisD]

It's a question that I have posed to this thread before about whether people are seeing physiological changes, but I cannot find my original thread for the life of me and want to change the question slightly.

I'm finding myself on a very very gradual but stable recovery (although at this pace it feels like it could take years) but my main concern is the issues with my muscles all over my body.

So firstly I want to ask if other people experience constant and/or severe muscle stiffness with crepitus (Noisy muscles and joints - cracking and popping)?

If you do, do you experience periods of muscle recovery - perhaps with good nutrition/certain supps/meds - but only to return to a weak, fatigued, damaged state with a flare?

Which muscles are affected and how badly? For me, my outer hips feel very damaged and they are always stiff and pop/crack, my upper back muscles, muscles in my arms pop with movement (Fingers and hands also when in flare mode), My knees constantly crack, my neck - all of these locations and probably more previously would be painful when they 'cracked' too but now the pain is less so with rigorous anti-inflammatory supplementation and diet.

Is this all simply to do with low energy being delivered to the muscles and joints and therefore they cannot function properly? Or could it be an inflammatory process that is damaging the connective tissue either temporary before repair or because it is now so persistent, perhaps it is permanent and will become a regular occurence?

I certainly feel like the form and structure of many of my joints has changed significantly, particularly my knees turning in and my upper back having less strength to hold shoulders out, and I know for a fact from a spinal X-ray that I have significant spinal degradation that I feel is quite noticeable in my posture. Anyone else?

 

[pattismith]

Hi @ChrisD ,
Glad you feel a bit better,

being ill for 35 years now, my knees and hips has become more and more cracking these times, as my muscles became more weak, so I thought there was a link too.

from time to time, I happened to block one hip when doing some movments because of this, it is rather painful.

Since I started T3 to improve my Low T3 Syndrome, my joins still crack but I didn't block my hip, so I have some hope, but I started not long ago so It may not be meaningful...

 

[AdamS]

I regularly get joint pain/cracking (mainly in my elbows, knees and neck). I’ve also found that my upper back, like yours seems to have less endurance, so I tend to lay down now if i’m using a laptop.

I’m unsure about what causes this and whether it is permanent damage. I also have EDS type 3 so maybe that could be a factor but I don’t think that explains it fully because other than a couple of sports injuries, I never really had any major joint issues before my onset of ME.

 

[InitialConditions]

One of my first symptoms was constant crepitus in my knees when turning position / swiveling whilst standing.

 

[ChrisD]

I regularly get joint pain/cracking (mainly in my elbows, knees and neck). I’ve also found that my upper back, like yours seems to have less endurance, so I tend to lay down now if i’m using a laptop.

I’m unsure about what causes this and whether it is permanent damage. I also have EDS type 3 so maybe that could be a factor but I don’t think that explains it fully because other than a couple of sports injuries, I never really had any major joint issues before my onset of ME.

When ever I do any kind of exertion, even just standing, my upper back is the first thing to weaken and lose support, then my jaw stiffens and cracks (perceived by my doctor as anxiety - i.e. clutching my jaw, even though it's not at all). Initially I wondered if over training of certain areas when I had PVFS had permanently caused weakness, so for example; Upper back from pull ups, Outer hip from Hip Press and so on - these are the workouts where I would potentially over do it when in a slightly better state of health (No PEM at that point).

Or maybe these are sites that are just universally weakened for all. At what point did you get your EDS diagnosis?

 

[AdamS]

When ever I do any kind of exertion, even just standing, my upper back is the first thing to weaken and lose support, then my jaw stiffens and cracks.

Initially I wondered if over training of certain areas when I had PVFS had permanently caused weakness, so for example; Upper back from pull ups, Outer hip from Hip Press and so on - these are the workouts where I would potentially over do it when in a slightly better state of health (No PEM at that point).

Or maybe these are sites that are just universally weakened for all. At what point did you get your EDS diagnosis?

Interestingly, weakness is not something i've experienced to a great degree with ME. It's more my endurance which is greatly affected. I had quite severe issues with joints/ligaments though in my milder/PVFS days where I could still work, especially when over exerting. In this phase I had the following:

• Severe joint pain in right elbow (lasted around 8-9 months), still flares up now and again.
• Plantar fasciitis (Lasted about 10 months before I did Graston Therapy which helped tons).
• Medial Knee pain which gradually improved as I scaled back exertion.

So can training when in PVFS/very mild phase of the illness cause damage to joints? Maybe, but what makes the joints more susceptible to damage in that phase i'm unsure...inflammation...autoimmunity, who knows?

My EDS diagnosis was made around 4-5 months after my first major relapse. Sadly the only treatment offered was physio/exercise which obviously isn't feasible with ME. I just make sure I support my back with a big pillow if using a laptop now to counteract any pain, or lay down, my back is okay usually when standing but obviously standing too long causes it's own issues as I have POTS too!

 

[Sherlock]

So can training when in PVFS/very mild phase of the illness cause damage to joints? Maybe, but what makes the joints more susceptible to damage in that phase i'm unsure...inflammation...autoimmunity, who knows?

That "why" is what I most need to find out. For me, the injury/damage to small joints absolutely requires two parts:

1. the underlying susceptibility
2. the actual physical trauma/stress that causes the injury, which can be any previously normal movement

I haven't as yet heard any MCAS expert that knows that. They only say it's "migratory", while for me there's nothing random or mysterious about it.

The inflammation that causes the susceptibility can come quickly (like overnight) and even sometimes go quickly. But there has in the recent period been a base level for months that is only slowly getting better each week.

Having sometimes quick changes (like overnight) going from okay to very bad seems more inflammatory than cellular autoimmunity driven. Even more so, sometimes having a rapid improvement seems to rule out autoimmunity -- and to rule out proteases, which used to be my first suspected cause.

 

[Sherlock]

...but what makes the joints more susceptible to damage in that phase i'm unsure...inflammation...autoimmunity, who knows?

My EDS diagnosis was made...

I'm looking into the culprit being 5-lipoxygenase (5-LOX), as Boswellia is helping a lot and 5-LOX is known to be inhibited by Boswellia (IIRC, by chemically binding). 5-LOX is known to inflame joints and Boswellia is a long-used Tx for ordinary osteoarthritis, etc.

Because applying DIY topical capsaicin works so well (and quickly) for me, I'm also looking into making some sort of topical Boswellia.

 

[negativelift]

So firstly I want to ask if other people experience constant and/or severe muscle stiffness with crepitus (Noisy muscles and joints - cracking and popping)?

If you do, do you experience periods of muscle recovery - perhaps with good nutrition/certain supps/meds - but only to return to a weak, fatigued, damaged state with a flare?

Which muscles are affected and how badly? Anyone else?

I’m stiff all over 24/7 but it feels like it’s centred around my spine/trunk. Legs I would describe as being more weak than stiff. Arms don’t really feel stiff at all and are definitely stronger than my legs (relatively speaking). Something is always aching though. I sound like an old man when I sit down or get up.

Also feel it takes me quite a bit of time for my body to conform to ‘new positions’ if that makes sense. Say i’ve been sitting for a bit, maybe only 30mins so not ages, when I come to get up i’ll feel as though i’m really hunched over still and have to conciously make a point of leaning back (way past vertical!) to straighten my torso out. I get that kind of stiffness is probably normal but not after such a short period. Knees stay bent a bit too until they straighten again and I walk it off. Worst is when bent over at the waist with a straight back (which I know you shouldn’t). That takes forever to feel like i’ve straightened out again.

In terms of cracking I get hips, knees (badly when squatting), ankles, shoulders and wrists just when rotating. Not elbows though weirdly. Never been overweight so my lower body joints shouldn’t have taken too much of a beating. And i’ve exercised way less than the average person over the last 15 years so I can’t imaging they’re in any way worn out.

No specific patterns noticed other than everything being worse with a relapse.

Bottom line is i’m 35 but feel like i’m about 65.

 

[Sherlock]

Say i’ve been sitting for a bit, maybe only 30mins so not ages, when I come to get up i’ll feel as though i’m really hunched over still and have to conciously make a point of leaning back (way past vertical!) to straighten my torso out. I get that kind of stiffness is probably normal but not after such a short period.

That might be related to what is called in inflammatory arthritis as 'gelling'. Inflammatory arthritis is said to be worse in the morning (osteoarthritis is not), though yours seems to come on super fast, not just overnight.

In terms of cracking I get hips, knees (badly when squatting), ankles, shoulders and wrists just when rotating. Not elbows though weirdly. Never been overweight so my lower body joints shouldn’t have taken too much of a beating. And i’ve exercised way less than the average person over the last 15 years so I can’t imaging they’re in any way worn out.

No specific patterns noticed other than everything being worse with a relapse.

Bottom line is i’m 35 but feel like i’m about 65.

I've always had crackable joints even pre post-viral CFS. (Some CTD.)

These days, my small joints are almost always injured. When extra inflammation sets in (unknown triggers), they get extra bad. Add a bit more inflammation and the joints become loose. E.g., my wrist will crack merely from doing a motion as if using a screwdriver, with no actual screwdriver. Add a bit more inflammation and they get swollen and stiff enough so they won't crack anymore, until inflammation subsides. My joints can sometimes get much better very quickly.

I've begin experimenting with making topicals and using them every day, rather than just using them at very bad times.

 

[ChrisD]

@RobR83 Your description matches mine exactly, I am sorry that you are experiencing these symptoms as well but I am glad there is someone else out there, the 'gelling' or freezing in position bit especially, it takes me about 30 mins to adjust from lying to sitting to standing and as you say it can feel like you are moulded in that position and that you are resisting it.

 

[negativelift]

That might be related to what is called in inflammatory arthritis as 'gelling'. Inflammatory arthritis is said to be worse in the morning (osteoarthritis is not), though yours seems to come on super fast, not just overnight.



I've always had crackable joints even pre post-viral CFS. (Some CTD.)

These days, my small joints are almost always injured. When extra inflammation sets in (unknown triggers), they get extra bad. Add a bit more inflammation and the joints become loose. E.g., my wrist will crack merely from doing a motion as if using a screwdriver, with no actual screwdriver. Add a bit more inflammation and they get swollen and stiff enough so they won't crack anymore, until inflammation subsides. My joints can sometimes get much better very quickly.

I've begin experimenting with making topicals and using them every day, rather than just using them at very bad times.

@Sherlock Thanks. I hadn’t really thought about arthritis. I guess because i’m not that old. It’s certainly no worse in the mornings so I guess lying proves quite neutral for me in that respect. Mine seems to be centred around bending. Or having limbs in bent positions.

@ChrisD Yep, they do seem to match pretty good. The freezing thing I find also works the other way too in that it takes me a good 30-40mins or walking to feel like I have loosened up and have a smooth flow to my walk, by which time i’m almost done anyway I get the impression regular people only need a few strides to find their rhythm. There’s a distinct awkwardness to my walk initially, I guess from the stiffness. Feels hard work too.

Also forgot to say before but I feel quite wobbly around the waist when standing. Not like rolls of fat wobbly but just not very secure, like there’s a distinct weakness there. Could just be a weak core from years of sedentary lifestyle but I don’t know? I feel like i’ve been exercising enough recently that I should have felt an improvement, but i haven’t really. I do press-ups and planks for example and I don’t sag in the middle easily doing those. But say a stiff door that needs pushing open will prove quite difficult for me compared to people who I would expect to be stronger than. I guess my ability to brace my back and exert force is lacking for whatever reason. Weak legs too probably don’t help given that’s the base you are working from.

It is quite heartening to find people with similar problems. Especially with something like CFS that’s so poorly understood anyway.

 

[ChrisD]

Yep, they do seem to match pretty good. The freezing thing I find also works the other way too in that it takes me a good 30-40mins or walking to feel like I have loosened up and have a smooth flow to my walk, by which time i’m almost done anyway I get the impression regular people only need a few strides to find their rhythm. There’s a distinct awkwardness to my walk initially, I guess from the stiffness. Feels hard work too.


EXACTLY THIS, I wonder if many others feel this? or if it's quite unique experience? I find the first 20 mins or so of walking difficult and then I get into a rhythm/flow and maybe have a good ten minutes (still not completely normal or healthy) and then hit my threshold around 40 mins total too. I also find that if I stop as I am walking to talk to someone or if my dog is sniffing something, then it completely upsets this rhythm and I start to feel those uncomfortable postural feelings again and more pressure on the knees, hips, ankles. I often tell people that I find walking easier than standing (Orthostatic intolerance) because atleast when walking I can create some momentum and just kind of lean and fall forwards, placing my feet in front of me - so I am sure there is an apparent awkwardness to my walk too.

 

[negativelift]

Yeah, same, once i’m going it’s fine. Stop start walking is not so good for me either. That slow shuffle walking you have to do when with kids/old people really does me in because like you say there is just no momentum. Apparently proper walking should be done with 90 deg elbows to maximise efficiency but i don’t think many people bother. Mainly because it looks silly.

Do you find changes in terrain elevation catch you out? Like going from flat ground to suddenly uphill. I always scuff my feet the first few steps even when I know full well what’s coming up. I feel like that kind of thing should be automatic. Maybe it is and we’re back to the stiffness theory; with my body (even while walking) somehow conforming to a basic position or set of positions for that terrain and being slow to adjust to a slightly different position/set of positions.

It could also explain why uneven ground makes me swerve about a lot which I don’t notice as much, if at all, from other people. Say i’m walking behind someone who is taking the exact same route. They seem fine; straight as an arrow. I look drunk!

Also looking around while walking causes me to scuff/catch my feet. I generally have to look straight ahead and down at the floor about 8-10 feet in front ideally.

In general my walking and coordination including balance is terrible compared to what it used to be.

 

[percyval577]

I certainly feel like the form and structure of many of my joints has changed significantly, particularly my knees turning in and my upper back having less strength to hold shoulders out, and I know for a fact from a spinal X-ray that I have significant spinal degradation that I feel is quite noticeable in my posture. Anyone else?

Before I got ill I was about 2 cm taler than my father. Afterwards at some stage I was 2 cm smaller.
When I too started a very slow recovery I soon told it to an orthopaedist. Answere: "Yes, everybody shrinks of course."
Well, I forgot to tell my father this interesting news. However, a bit later I had some very good moments, and at some of them I suddenly got tall again, a funny feeling as if I was a puppet and somebody would lift me up.

Therefore I don´t think that there is any real damage coming with all this crap. Maybe it´s only by posture, or maybe the nerves (I think) are steadily able to induce some "beginning" inflammation or so.

Since I started T3 to improve my Low T3 Syndrome, my joins still crack but I didn't block my hip, so I have some hope, but I started not long ago so It may not be meaningful...

I only have very seldom joint cracks, and only sometimes for a period joint pain (most often one knee).

Yep, they do seem to match pretty good. The freezing thing I find also works the other way too in that it takes me a good 30-40mins or walking to feel like I have loosened up and have a smooth flow to my walk, by which time i’m almost done anyway I get the impression regular people only need a few strides to find their rhythm. There’s a distinct awkwardness to my walk initially, I guess from the stiffness. Feels hard work too.

I know cement, and if something would retract my legs and arms from moving into the direction they need to.

or it's quite unique experience? I find the first 20 mins or so of walking difficult and then I get into a rhythm/flow and maybe have a good ten minutes (still not completely normal or healthy) and then hit my threshold around 40 mins total too. I also find that if I stop as I am walking to talk to someone or if my dog is sniffing something, then it completely upsets this rhythm and I start to feel those uncomfortable postural feelings again and more pressure on the knees, hips, ankles. I often tell people that I find walking easier than standing (Orthostatic intolerance) because atleast when walking I can create some momentum ...

Sometimes (only since I am very slowly improving) I have kind of a walk mania, and then I must not stop, but suddenly the energy or coordination has gone after about 12 kilometers, and I must not go one further step with any normal speed. This mania occured around every thenth day for about two years.
Mostly then I feel only normal enough and not especially loosend up or in a rhythmic flow. But before my illness arrived I sometimes (mostly at night) hopped surprisingly fast forward, and felt like a spring. This occured only once again now.
PS: I got a Morbus Scheuermann when I was 15. Later when I was ill sometimes my upper back felt such bowed that I felt the urge to make it bow the other direction putting my back on a t-shirt or a book. But it didn´t help much, yoga did though not all too bad.

 

[negativelift]

@ChrisD I don’t know if there’s anything similar near you but I plan on having my gait analysed later in the year. I wanted to do it sooner but been waiting until I feel like i’ve got past any problems which could be put down to simple deconditioning. Anyway, the University of Salford have a Podaitry clinic which you can self refer to. It’s free as they’re just students learning but it’s still a proper analysis. I think it only costs if you end up needing orthotics, like something to put in your shoe. And even then it’s only if you want them.

 

[ChrisD]

Do you find changes in terrain elevation catch you out? Like going from flat ground to suddenly uphill. I always scuff my feet the first few steps even when I know full well what’s coming up. I feel like that kind of thing should be automatic. Maybe it is and we’re back to the stiffness theory; with my body (even while walking) somehow conforming to a basic position or set of positions for that terrain and being slow to adjust to a slightly different position/set of positions.

It could also explain why uneven ground makes me swerve about a lot which I don’t notice as much, if at all, from other people. Say i’m walking behind someone who is taking the exact same route. They seem fine; straight as an arrow. I look drunk!

Also looking around while walking causes me to scuff/catch my feet. I generally have to look straight ahead and down at the floor about 8-10 feet in front ideally.

Agree with all of this to a tee as well! even just a small change in gradient and it seems to take a while to react to surroundings and awareness of space and I indeed scuff my feet on the floor, in fact my shoes and trainers are totally worn out from the arch to the heel of the shoe but the tread is preserved at the toe end. My physio gave me the reason for this and sort of correlates with everything we are talking about now.

Talking about adjusting to settings or environment, I feel that we do a lot more work with our eyes and senses than we realise, atleast I feel that I am mitigating a lot for lack of balance and coordination by registering things with eyes and touch. My reason for this, is because when I walk through pitch black in the house or wherever, I find myself struggling to walk in a straight line and basically falling over and bumping into things compared to where I would once confidently walk through a darkened corridor as normal (maybe better eyesight and night vision then too). Now it is as if darkness or darker environment switch off all balance and even weaken my posture - as if I could just instantly drop to the floor.

I really notice that when I am in a worse patch or a flare, that my knees bend inwards more and also push forward with my calves pushing out backwards, my hips weaken and hence don't provide support to posture. Where the said healthy person has a more straight to bowed arrangement of their lower body muscles and can therefore find more balance on uneven ground or varying gradients.