Poll on myalgia (muscle pain)

Do you have significantly worse and/or disabling and/or more-frequent myalgia than before ME/CFS?

  • Yes

    Votes: 83 78.3%
  • No

    Votes: 23 21.7%

  • Total voters
    106

MeSci

ME/CFS since 1995; activity level 6?
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@MeSci my tryptophan levels were normal on my tests. But I found this, it could apply to a dysfunctional vestibular balance problem. This has always been a huge/debilitating issue for me since becoming ill. My onset was an acute vertigo attack.

http://www.autism.com/symptoms_toe_walking

Toe walking is quite common in young children, age 3 and younger; but toe walking, especially in children 5 years and older, is often associated with neurological immaturity. Many parents and professionals are not aware of the various interventions used to treat toe walking. The following interventions are listed from least to most invasive.

Physical exercises are sometimes used to stretch out the tendon in order to reduce toe walking, but this treatment has had minimal success.
A dysfunctional vestibular system, a common problem in autism, may be responsible for toe walking. The vestibular system provides the brain with feedback regarding body motion and position. It may be possible to reduce or eliminate toe walking by providing the person with therapeutic vestibular stimulation (e.g., being swung on a glider swing).
Toe walking may be directly or indirectly related to a visual-vestibular problem. I have conducted several research studies with Melvin Kaplan, O.D. at the Center for Visual Management in Tarrytown, New York. While conducting these studies, I observed four individuals who were toe walkers. In each case, their toe walking was eliminated within seconds after the child began wearing prism lenses.
I had a quick look for scientific info about autism and toe-walking and wasn't impressed by some of the hits. I am not convinced that it is something that needs treating through physical therapy, as the appearance and/or degree of the feature seems to coincide with those of other symptoms, and specifically relates to levels of distress. It's perhaps a sign of some kind of biochemical imbalance, and if this is fixed, the anxiety leading to these signs can be reduced.

I suspect that it may be serotonin rather than tryptophan that is depleted. This can occur in gut dysbiosis which causes tryptophan to be converted to kynurenine instead of serotonin via 5-HTP. This is mentioned in a few threads here. Dietary changes can help, as can taking 5-HTP.
 
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When I was a child I was sent for remedial classes because when I walked I 'threw' one of my feet - I think it was the right one. I think the classes were probably a waste of time as they couldn't correct the underlying problem, which I think may have been a neuro problem resulting from a severe case of chickenpox which also seems to have led to a unilateral facial paralysis (Bell's palsy). I see someone has referred to herpes viruses later - what a busy and interesting thread this has become!

I have occasionally had a 'shudder' in a leg, but not paid it much attention as I get all sorts of twitches/myoclonus.

I have always had rather an awkward gait, and have looked with envy at people who can walk elegantly!
I'm guessing your facial palsy (drawn down lip?) is on the opposite side of the leg you throw?
Did your leg throw look like how this man with autism walks at 11:30?

Anybody watched their gait between flares? When I did I noticed I did not land on my heels, roll over the footsole and push forward with my toes but rather land on the whole foot and not push with my toes.
A little trick is to look at the soles of shoes that you have on a lot and compare the wear pattern.
@Sherlock yes . I notice the right inner heel side of my thick house sandals are worn more than the left. When I'm preparing food and standing for any length of time I must be leaning more on my right leg without realizing because it's the strongest.
My right inner heal and forward on the toes is more worn out. What I've noticed with myself is that I seem to roll my weight onto the inside of my right instep and ball of the foot because my big toe is weak. My big toe can't seem to hold much weight, it folds up too easily and when I try to push off of it when I walk it just gives in. The only behavioral cause I can think of is driving with pedals on the right.

Tremor and twitching (fasciculations) can also be due to too much cholinergic activity or electrolyte deficiency/imbalance. I had violent, Parkinson's-like tremor of my arms when I had severe hyponatraemia, but have also found that these can be relieved or reduced by taking anticholinergics like diphenhydramine or chlorphenamine.
I had my first Parkinson-like tremor a few weeks ago! So exciting! I think muscle fasciculations are different. Fasciculations are good. You shouldn't try to stop them, IMO.

I used to find it uncomfortable switching to flatties - or bare feet - after wearing heels. It made my calf muscles too short so that I had to walk on tiptoe. In fact, I have often had the urge to walk on tiptoe even since giving up heels. It can be a sign of autism, and I am borderline Asperger's. But nowadays it only seems to happen when I have PEM. I find that interesting and possibly significant, as Asperger's seems to be relatively common among ME sufferers, and both conditions seem to have a significant involvement of gut problems, which may be at least partly causative, at least in some of us.
So, what I think I realized about toe-walking is that when you elevate up on your heals it takes tension off of your upper back, neck, and throat, which then allows your brain to relax. My mind becomes instantly clearer and I focus better. It actually becomes more difficult to "retreat" into my head.

I used to exercise a lot and do personal training. There is a phenomenon where when people do heavy squats, once they tire their torso starts to collapse forward and they throw their head backwards. Throwing the head back seems to be because the posterior kinetic chain, primarily used for "hip extension" movements doesn't have enough slack, and the feet forced to be flat on the floor while squatting appears to contribute to this.
 

Sherlock

Boswellia for lungs and MC stabllizing
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Throwing the head back seems to be because the posterior kinetic chain, primarily used for "hip extension" movements doesn't have enough slack, and the feet forced to be flat on the floor while squatting appears to contribute to this.
Amen to that, being very inflexible myself with a probable CTD. So Louie Simmons style squatting is preposterous to me.

There is the association between CTDs and CFS, but I've never heard what the possible mechanism(s) might be. Anybody know?
 

Sherlock

Boswellia for lungs and MC stabllizing
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Like a genetic or auto-immune CTD? For me, probably not. Disordering of connective tissue? Definitely.
Care to elaborate, Vic? You've probably noticed there's an Ehlers Danlos subforum here, though for me I'm the opposite of hypermobile. I do have a cousin with idiopathic abdominal wall hernias and a vertebral ganglion cyst, plus Eosinophilc Esophagitis.

Btw, speaking of movement, I'd seen you somewhere post a youtube from one of those twins done in his car, where he does the jaunty loose movements. That reminded me right away of something I'd seen by accident recently in connection with something called EMDR http://www.webmd.com/mental-health/emdr-what-is-it which is Eye Movement Desensitization and Reprocessing. The movements I'm talking about are not central to EMDR but are an adjunct.
 
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Care to elaborate, Vic? You've probably noticed there's an Ehlers Danlos subforum here, though for me I'm the opposite of hypermobile. I do have a cousin with idiopathic abdominal wall hernias and a vertebral ganglion cyst, plus Eosinophilc Esophagitis.

Btw, speaking of movement, I'd seen you somewhere post a youtube from one of those twins done in his car, where he does the jaunty loose movements. That reminded me right away of something I'd seen by accident recently in connection with something called EMDR http://www.webmd.com/mental-health/emdr-what-is-it which is Eye Movement Desensitization and Reprocessing. The movements I'm talking about are not central to EMDR but are an adjunct.
Basically I think CFS/ME is caused by musculoskeletal collapse that causes dramatic reduction in mobility, particularly in the neck/shoulders/chest/hips. It's not only makes movement inefficient and dramatically increases strain on connective tissue, but interferes with organs, causes ischemia, and somehow affects the nervous system, though I haven't fleshed out my ideas on how yet.

I think EDS makes people more prone to CFS/FM because their connective tissue is somehow weaker and more prone to damage/scarring. Hypermobility, I'm not quite sure.

The video I posted wasn't one of the Hodge Twins, it was Elliot Hulse. They do look similar. Basically the point I was making with it is if you can't move like he did in that video, then there's something wrong there.
 
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There's a myalgia pain that i always get after socialising but never ever at home (or after normal trips out for shopping or appointments), not even during crashes, and thats in the intercostal muscles front and back.

This is something that has stayed constant throughout the illness.

I can only attribute it to something to do with having to speak louder and laughing a lot when socialising. I joke and laugh a hell if a lot when i'm out and it seems even laughing is a punishable offense in this illness.

Imagine going to a GP and explaining that i'm paying the price, or bedridden, for laughing. I'd be laughed out of the office.
I've often joked that laughter isn't always the best medicine for some people.
 

taniaaust1

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The only thing I can think of that is helped (for me) by walking around a bit is stiffness, which I may get if I sit down too much.
Same here, its the only thing walking for me helps. I sometimes suffer stiffness when I first get out of bed. I dont notice it till I go to walk and then Im like an old person hobbling around trying to "destiff" if that is a word lol.
 

taniaaust1

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I had to answer no.

The first 8-9 years I was really ill my symptoms fit fibromyalgia criteria. My pain level was often a 7 on a scale of 1-10. I had 60 of 65 symptoms on one fibro scale, 85 of 100 on another.

Then after mono hit me at 35, symptoms slowly increased and changed to an ongoing case that the ICC describes well. If I take the same fibro inventories as listed above, my scores are lower than before.

I still have muscle pain and issues. It is different, though, more like burning or aching all over from exertion, or achy as if I had had the flu. Most days, pain level stays between 2-5.

The Mac truck doesn't come through my room at night quite as often. I remember waking up with every muscle in my body on fire and hurting.
I sounds like you are getting more then me and I answered yes. I only thou get muscle pain nowdays if Ive done too much.
 

taniaaust1

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How on earth does what meandthecat said 'sound like autism'? You obviously know nothing about autism or you wouldn't make such a statement.
I think the other poster was probably refering to just the head banging part.. which is in fact common in autism (of cause it isnt there done to distract from pain).
 

taniaaust1

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@Mij I did have it, believe me! I am extremely interested in learning why these diseases manifest as they do. Whether or not I continue to have it is the question. Is it a subset of the same disease process, a different face of it, or what? I think we all hope to know.

.
Gracie I had bad Fibro after the first year of ME and had it for then quite a few years till I got my remission from ME.. the FM got better as the ME did. Interestingly when I got ME again.. I didnt get the FM the second time around.

I'd love to know what was different about my body to not cause it this time...
 

taniaaust1

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Has increased (susceptibility to) muscle tearing been reported in ME/CFS?
I dont think any studies have been done on that and ME. I tore shoulder tendons when I reached out just to turn a powerboard off. The specialist I then went to for the shoulder said he thought the issue had been caused by some kind of "autoimmune disorder" though he couldnt say what.
 

taniaaust1

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@Sherlock I am intrigued by what you have described.

One of my clients was telling me about her husband's misfortune. All he did was turn over in bed one night - and his rotator cuff tore, requiring surgery. I do not know his full medical profile. They were religiously telling everyone they met to be careful - odd things can happen.
Gracie I just made a post about when I got a rotator cuff injury (thou in my post I just said my shoulder). I torn mine just reaching out to turn off something. Specialist said injuries done this easy is usually due to the person having an autoimmune disease or diabetes...
 

taniaaust1

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In the early days myalgia was extremely severe. During the first two years of being bedridden, every inch of muscle from head to foot was excruciating but on top of this every joint hurt too and also my skin (i say skin but its maybe just beneath the skin rather than outer skin itself)

When bedridden even the weight of a single blanket was very painful.
This post descibes well how my ME used to be .. even the sheets on bed hurt me. (add severe pain bone to the above to.. like someone drilling inside of bones). There wasnt a part of me which didnt used to hurt. Thank God Im no longer like that.