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

Mij

Senior Member
Messages
2,353
Likes
4,973
@Sherlock in the link that you provided me, you wrote that you no longer get PEM by taking anti-nflammatories. Could you tell me what other PEM symptoms you had?
 
Messages
137
Likes
54
My muscle hardness feels as though it involves excessive and continuous contraction of the muscle fibres. My suspicion is that this is due either to excessive release (or impaired reuptake) of acetylcholine or to electrolyte imbalance.
Yeah it could be. I think this is basically how pesticides/organophosphates contribute to these fatigue syndromes. They're acetylcholinesterace inhibitors. Acetylcholinesterace is an enzyme that unbinds ACTH and stop muscle contraction. So when you inhibit that it prolongs and intensifies contractions.

But I think the real reason why traveling muscle tightness is a problem for many in CFS is because of collapses in the musculoskeletal system. Basically, when a muscle is shortened and becomes tight from use/overuse, the resistance to tension in our skeletal system automatically re-lengthens it. But, if there is a slip in the skeletal suspensions, some joints somewhere aren't aligned correctly due to some muscle becoming too extremely tight and short, the suspension collapses, and the passive forces normally applied to those muscles during rest that helps restore muscle length are gone, and certain joints/muscles become extremely tight. This tightness and instability then radiates to other areas, because everything is connected.
 

GracieJ

Senior Member
Messages
761
Likes
1,770
Location
Utah
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.
 

GracieJ

Senior Member
Messages
761
Likes
1,770
Location
Utah
As for life before I became really sick...

I can't say I had muscle pain. But I definitely had impairment in usage, unable to keep up in gym classes in spite of having previously been very active and flexible. I was already practicing forms of pacing in my teens and 20s without realizing it.
 
Messages
10,157
Likes
17,067
meandthecat said:
mine is a world of pain, like many PWME I have felt this way for so long I can't remember what it was like before. I have got old with this disease, old people traditionally feel more aches and pains. I have got used to pain and so work through it, not that it seems to get any less. Occasionally I find myself in a space where there is no pain and its absence shocks me. The pain is not as bad as it used to be when I would bang my head on the wall for the relief of more acute sensation but I think it has changed me, a loss of innocence perhaps. I hurt, therefore I am
Really...? That sounds like... autism. Man I can't imagine pain that bad though. I had it fairly bad sometimes, mostly localized around injuries. Only widespread for a week or so, and it doesn't sound like it was as bad as what I hear a lot of.
How on earth does what meandthecat said 'sound like autism'? You obviously know nothing about autism or you wouldn't make such a statement.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,218
Likes
13,152
Location
Cornwall, UK
Yeah it could be. I think this is basically how pesticides/organophosphates contribute to these fatigue syndromes. They're acetylcholinesterace inhibitors. Acetylcholinesterace is an enzyme that unbinds ACTH and stop muscle contraction. So when you inhibit that it prolongs and intensifies contractions.
A couple of small corrections to avoid confusion - the spelling is acetylcholinesterase, sometimes shortened to AChE. It's an enzyme, as can be deduced from the '-ase' ending. Acetylcholine's abbreviation is ACh. ACTH is adrenocorticotropic hormone, and is the step between CRH and cortisol. Different system.
 

Hip

Senior Member
Messages
16,546
Likes
36,081
Many studies on enterovirus infections in ME/CFS patients looked at muscle tissue biopsies, and found enterovirus present in the muscle tissues. The muscles are not the only tissues or organs that enterovirus likes to infect, but it makes me wonder whether the muscle pain might be caused by this enterovirus infection of the muscles.

All the following ME/CFS studies found enterovirus infections in the muscle tissues:

Enteroviral RNA sequences detected by polymerase chain reaction in muscle of patients with postviral fatigue syndrome
Gow JW, Behan WM, Clements GB, Woodall C, Riding M, Behan PO. BMJ. 1991 Mar 23;302(6778):692-6.
➤ This study found 20% of ME/CFS patients had high titers to coxsackievirus B, compared to 14% of controls. Furthermore, 53% of these ME/CFS patients had enteroviral RNA sequences in their muscles, compared to 15% for health controls.

Amplification and identification of enteroviral sequences in the postviral fatigue syndrome
Gow JW1, Behan WM. Br Med Bull. 1991 Oct;47(4):872-85.
➤ This study found that ME/CFS patients were 6.7 times more likely to have enteroviral RNA in their muscle tissue, compared to healthy controls.

Persistent virus infection of muscle in postviral fatigue syndrome
Cunningham L, Bowles NE, Archard LC. Br Med Bull. 1991 Oct;47(4):852-71.
➤ This study found enteroviral RNA in 24% of ME/CFS patients' muscle biopsy samples, and Epstein-Barr virus DNA in a further 9% of these biopsy samples.

Persistence of enterovirus RNA in muscle biopsy samples suggests that some cases of chronic fatigue syndrome result from a previous, inflammatory viral myopathy
Bowles NE, Bayston TA, Zhang HY, Doyle D, Lane RJ, Cunningham L, Archard LC. J Med. 1993;24(2-3):145-60.
➤ This study found enteroviral RNA in 26% of ME/CFS patient's muscle biopsy samples, compared to 1% in healthy controls.

Studies on enterovirus in patients with chronic fatigue syndrome
Gow JW, Behan WM, Simpson K, McGarry F, Keir S, Behan PO. Clin Infect Dis. 1994 Jan;18 Suppl 1:S126-9.
➤ This study found enteroviral RNA in 26.4% of ME/CFS patient's muscle biopsy samples, and found enteroviral RNA in 19.8% the muscle biopsies of patients other neuromuscular disorders. From these results the authors concluded that "it is unlikely that persistent enterovirus infection plays a pathogenetic role in CFS." However, this conclusion may not be a logical, since enterovirus is associated with a wide range of diseases, and thus might also be playing a role in these other neuromuscular disorders.

Enterovirus in the chronic fatigue syndrome (full text here)
McGarry F, Gow J, Behan PO. Ann Intern Med. 1994 Jun 1;120(11):972-3.
➤ This study details an autopsy of a deceased ME/CFS patient. Enteroviral RNA was found in the heart, muscles, hypothalamus and brainstem of this patient, and this RNA showed an 83% similarity to coxsackievirus B3. Control tissue samples taken from four patients who died of cerebrovascular diseases, and another four who had depression and committed suicide, showed no evidence of enteroviral RNA.

Enterovirus related metabolic myopathy: a postviral fatigue syndrome
Lane RJ, Soteriou BA, Zhang H, Archard LC. J Neurol Neurosurg Psychiatry. 2003 Oct;74(10):1382-6.
➤ This study found enteroviral sequences by RT-NPCR in 20.8% of ME/CFS patient's muscle biopsy samples, while all the 29 control samples were negative for such sequences.
 
Last edited:
Messages
137
Likes
54
Many studies on enterovirus infections in ME/CFS patients looked at muscle tissue biopsies, and found enterovirus present in the muscle tissues. The muscles are not the only tissues or organs that enterovirus likes to infect, but it makes me wonder whether the muscle pain might be caused by this enterovirus infection of the muscles.
Those are some sweet sources. I've been wondering what the relation is between these "flu-like illnesses" and CFS is. My thought was that some viruses may actually be attacking muscle, causing scar tissue buildup and shortening.

I was puzzled at first too, then I wondered if @Vic meant the head-banging.
Yeah headbanging. Seems fairly common in autism.

A couple of small corrections to avoid confusion - the spelling is acetylcholinesterase, sometimes shortened to AChE. It's an enzyme, as can be deduced from the '-ase' ending. Acetylcholine's abbreviation is ACh. ACTH is adrenocorticotropic hormone, and is the step between CRH and cortisol. Different system.
Ah yeah thanks for that. Hadn't committed those to secure memory.
 

Nielk

Senior Member
Messages
6,967
Likes
10,706
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
You don't feel that this is a description of myalgia?
 

GracieJ

Senior Member
Messages
761
Likes
1,770
Location
Utah
You don't feel that this is a description of myalgia?
Of course it is myalgia. My response was concerning the poll, the timing, and the relative severity.

Compared to about eight years of constant Mac truck fibro pain, it is mild now. Not the same.

I point it out because no one can explain the reasons why this happened this way.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,218
Likes
13,152
Location
Cornwall, UK
Of course it is myalgia. My response was concerning the poll, the timing, and the relative severity.
I think I see the problem. You had no myalgia before getting fibro, then bad myalgia after getting fibro, then milder myalgia after the fibro turned into ME/CFS? I hadn't foreseen this possibility! I think that you should really be a yes, although to answer completely literally it would be no. I had been thinking in terms of going from not-ill to ill-with-ME/CFS when I worded it!
 

Mij

Senior Member
Messages
2,353
Likes
4,973
Of course it is myalgia. My response was concerning the poll, the timing, and the relative severity.

Compared to about eight years of constant Mac truck fibro pain, it is mild now. Not the same.

I point it out because no one can explain the reasons why this happened this way.
Since you have both FM and M.E. would you describe the type of myalgia/pain as different from one another? I don't mean in severity, but the type of pain you experience.

I don't have FM, but in the past I have experienced sharp stabbing and burning type myalgia. It was transient though.
 

GracieJ

Senior Member
Messages
761
Likes
1,770
Location
Utah
@MeSci That sums it up.

I do answer literally. Way too much second-guessing around here. As I could not assume the purpose of your poll, I went with the timeline of my own illness to illustrate another twist to the story. Of course, comparing it to pre-illness would be a yes.

I went 14 years without a diagnosis of any kind. It has been 24 years now since I became really ill in a world that wanted to shut me up for daring to say I was ill. It has only been in the last three years that I am seeing the full picture, thanks to Phoenix Rising coming into my life. I appreciate the polls and discussions.

@Mij I am not sure I even qualify as having fibromyalgia anymore. Either the symptoms have changed or are managed, not sure. My experience is that the pain is similar in the patterns across the body, but it was much worse in those early years.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Likes
774
Location
k8518704 USA
@Sherlock in the link that you provided me, you wrote that you no longer get PEM by taking anti-nflammatories. Could you tell me what other PEM symptoms you had?
Actually, I overcame what I now consider to be PEM by using exercise only - this was years ago before I knew anything about CFS besides having heard the name (about Cher). I would exercise very short and hard with maybe 1/2 or less the weight I was used to, then spend 2 days or more in bed with the flu like symptoms and fog. I thought of it as paying the price. Then I'd repeat when I felt able to do so. Now that you mention it, I don't recall any extraordinary muscle soreness from then. What resulted for me was systemic.

As for anti-inflammatories, I think that could have merit (as well as anti-oxidants) but would be less important than using anti-acid such as bicarb. However, @Woolie recently reported "I do still seem able to get PEM" despite a medium dose of prednisone, which would be much more powerful than herbs or NSAIDS. http://forums.phoenixrising.me/inde...ed-should-i-continue.35521/page-2#post-559020

I wouldn't use anti-inflammatories now peri-exercise because that would probably blunt any benefit. Statins are known to do so. Then again, I recall one study with normal senior citizens getting a better improvement from exercise when taking NSAIDS. So the right amount of desirable inflammation from exercise is probably a Goldilocks thing :) Bodybuilder types, btw, might take the pro-inflammatory arachidonic acid in capsules, while CRON longevity type avoid AA in food like the plague.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Likes
774
Location
k8518704 USA
found enterovirus present in the muscle tissues. The muscles are not the only tissues or organs that enterovirus likes to infect, but it makes me wonder whether the muscle pain might be caused by this enterovirus infection of the muscles.
I had always thought that my start was from an ordinary virus, but because of enormous stress the virus had somehow gotten in really deep, so to speak. I didn't know what that meant mechanistically, but this idea sure seems to fit.

But can anybody speculate on how intracellular non-lytic viral RNA would result in easier muscle tearing? How would contractile proteins in myofibrils be easier to break? If the structure is defective, the muscle should presumably be weaker, too, since it wouldn't be doing its proper job -- unless there is only a small number of weak links. Do people find that a muscle prone to tearing is also weaker?

Or alternately, how would the sarcolemma (the membrane of muscle cells that needs to be able to get shorter or longer) be more likely to rupture? A ruptured sarcolemma would presumably result in more inflammation than damage to myofibrils as cellular contents might spill out.
 

Mij

Senior Member
Messages
2,353
Likes
4,973
@GracieJ you could be right that you may never had FM. There are particular "tender points" with FM and I think this is how it's diagnosed. There are ppl who also develop FM after having CFS for 20yrs. I was afraid at times that I was developing FM because I had 2 of these "tender points", but it was only for a short time and then it went away.

My understanding now is that M.E and CFS type pain is an all over the body type pain.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Likes
774
Location
k8518704 USA
It only happens during flares. It does not last. When the inmflammation is over it goes back to former size. The strange thing is that the core of the imflamation is higher up ( hip/pelvic area).

It does not happen in my arms anymore. Something must have changed for the better there.
I also find that muscle problems quickly come and go, so that tends against longer duration causes like fibrosis.

It can happen during a virus cold, during dysbiosis from sugar->candida, or rarely without a trigger that I had noticed. The rising tide of inflammation floats all boats, and I usually feel previous tendon injuries then also.
 

GracieJ

Senior Member
Messages
761
Likes
1,770
Location
Utah
@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.

The tender points are no longer supposed to be used for diagnosis of FMS as of 2010. Of course, their use continues, sometimes to patient detriment.

I think the patterns in one or the other disease are going to vary with patients.

Fibromyalgia clients come in for therapy, and I am full of questions for them. I have to shut up! The few ME/CFS clients I see describe their pain differently. Not taking notes, wish I had time to do so.

Sorry, @Sherlock , we keep crossing posts.