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
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I did that too but it is a long time ago it was that bad.
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There is a lot you do not know.
@MeSci
The results of your poll seem consistent so far with the results of a study that asked 393 patients with ME/CFS attending 7 different U.S. clinics, including the Open Medicine Institute Consortium, to rate their muscle aches/pains on a scale from 0 to 16 (if I understand the chart below correctly; the numbers may not refer simply to intensity of pain - I'm not sure...).
The 3 clinics represented by the lighter blue, aqua, and red colored bars provided a little over half (212/54%) of the patients, and at each of those clinics the number of patients reporting their pain to be "0" was right around 20%. Overall the number is a bit less, maybe 17% as a crude estimate. (See the 7 vertical bars at the far left of the graph over the number "0."):
(For much more additional information, including demographics and also similar charts for other symptoms, see this large downloadable pdf file beginning on p.180 with the study titled "Measures of CFS in a Multi‐site Clinical Study": Drug Development for CFS and ME Public Workshop Day 2. The chart I show for muscle pain is on p.195.)
The results of your poll seem consistent so far with the results of a study that asked 393 patients with ME/CFS attending 7 different U.S. clinics, including the Open Medicine Institute Consortium, to rate their muscle aches/pains on a scale from 0 to 16 (if I understand the chart below correctly; the numbers may not refer simply to intensity of pain - I'm not sure...).
The 3 clinics represented by the lighter blue, aqua, and red colored bars provided a little over half (212/54%) of the patients, and at each of those clinics the number of patients reporting their pain to be "0" was right around 20%. Overall the number is a bit less, maybe 17% as a crude estimate. (See the 7 vertical bars at the far left of the graph over the number "0."):
(For much more additional information, including demographics and also similar charts for other symptoms, see this large downloadable pdf file beginning on p.180 with the study titled "Measures of CFS in a Multi‐site Clinical Study": Drug Development for CFS and ME Public Workshop Day 2. The chart I show for muscle pain is on p.195.)
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I'm (slightly) comforted to hear that at least one other person has had the same weird stabbing pains I get
as well as the general achiness and tenderness and the joint pains without locus or redness.
I'm not pleased they get them at all, just relieved to hear I'm not alone.
I've never known whether or not to call the stabbing pain I get in my head a "new kind of headache" or not.
It's a strong pain, always in the same place but thankfully, never lasts too long.
But I get them all over, in my muscles too. I am assuming it's muscles on the surface of my scalp are doing my head ones.
as well as the general achiness and tenderness and the joint pains without locus or redness.
I'm not pleased they get them at all, just relieved to hear I'm not alone.
I've never known whether or not to call the stabbing pain I get in my head a "new kind of headache" or not.
It's a strong pain, always in the same place but thankfully, never lasts too long.
But I get them all over, in my muscles too. I am assuming it's muscles on the surface of my scalp are doing my head ones.
I'm (slightly) comforted to hear that at least one other person has had the same weird stabbing pains I get
as well as the general achiness and tenderness and the joint pains without locus or redness.
I'm not pleased they get them at all, just relieved to hear I'm not alone.
I've never known whether or not to call the stabbing pain I get in my head a "new kind of headache" or not.
It's a strong pain, always in the same place but thankfully, never lasts too long.
But I get them all over, in my muscles too. I am assuming it's muscles on the surface of my scalp are doing my head ones.
as well as the general achiness and tenderness and the joint pains without locus or redness.
I'm not pleased they get them at all, just relieved to hear I'm not alone.
I've never known whether or not to call the stabbing pain I get in my head a "new kind of headache" or not.
It's a strong pain, always in the same place but thankfully, never lasts too long.
But I get them all over, in my muscles too. I am assuming it's muscles on the surface of my scalp are doing my head ones.
I am very glad that I have little pain other than muscle aches arising from using them. I did at one time have a nagging head-, neck- and upper mid-back pain most of the time. It was very wearing.
I did a general pain-frequency poll here.
That's interesting. Mij, are you familiar with the term myokines?
http://forums.phoenixrising.me/index.php?threads/myokine-il-6-as-muscle-anti-inflammatory.34962/
http://forums.phoenixrising.me/index.php?threads/myokine-il-6-as-muscle-anti-inflammatory.34962/
Yes, I think it's just from usage, but it can last for days. It's not from lack of use, as I am quite active. So if I have used my arm muscles, e.g. from pruning a tree, they may ache for days afterwards, depending on the amount of use. If I walk too much, my leg muscles will ache for a day or two. (Leg ache due to muscle use can be hard to differentiate from PEM-type aching and weakness though.) The affected muscles tend to feel very tight, and can be very hard to the touch, when they are aching. I've noticed that when they start to recover, the muscles start twitching, so I usually welcome the twitching. However, there is also a type of twitching that occurs when I have lost a lot of electrolytes due to osmotic diuresis following over-activity. Complicated, this illness!
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.
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.
@MeSci it appears as though our myalgia-s come from different underlying causes? This was a topic I was always curious about.
What other symptoms do you experience with PEM? My worst involves the autonomic nervous symptoms. I get some muscle tenderness but not more than usual. A little more weakness though.
What other symptoms do you experience with PEM? My worst involves the autonomic nervous symptoms. I get some muscle tenderness but not more than usual. A little more weakness though.
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I wondered for a long time about the hard to the touch. Mine usely also become thicker, special my calves. That can happen overnoght.
In the world of bodybuilding, there will always be someone selling his program to "gain up to one inch on your arms in one day".
The method is to do a lot of high intensity lifting in repeated bouts throughout an entire day, together with taking lots of protein and energy calories. Any increase in arm diameter will actually be from inflammation/edema, since it is impossible to create enough muscle protein synthesis in one day to make any observable change.
Any long term increase would probably be from fibrosis which occurred because of the abuse.
CFS apparently greatly lowers the threshold, so that the same effects can occur from very little exertion.
The method is to do a lot of high intensity lifting in repeated bouts throughout an entire day, together with taking lots of protein and energy calories. Any increase in arm diameter will actually be from inflammation/edema, since it is impossible to create enough muscle protein synthesis in one day to make any observable change.
Any long term increase would probably be from fibrosis which occurred because of the abuse.
CFS apparently greatly lowers the threshold, so that the same effects can occur from very little exertion.
That occurred to me too - the differences!
My most-hated PEM symptoms are nausea, polyuria and insomnia. I also get weakness, worse bowel function, mild abdominal pains, eye strain/photophobia, sometimes a mild but nagging head- and neckache, poor co-ordination, loss of balance, swollen neck glands, tender armpit glands, nasal congestion, very slight dermatitis in my palms (was very bad before my dietary changes), lowered mood (which could be due to poor sleep), worse perceived temperature swings...there is probably more but that will have to do for now!
Most things are considerably milder than before the diet changes, and they almost disappeared for a short time.
My most-hated PEM symptoms are nausea, polyuria and insomnia. I also get weakness, worse bowel function, mild abdominal pains, eye strain/photophobia, sometimes a mild but nagging head- and neckache, poor co-ordination, loss of balance, swollen neck glands, tender armpit glands, nasal congestion, very slight dermatitis in my palms (was very bad before my dietary changes), lowered mood (which could be due to poor sleep), worse perceived temperature swings...there is probably more but that will have to do for now!
Most things are considerably milder than before the diet changes, and they almost disappeared for a short time.
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.
I don't think it's as bad as when I was taking an ACE inhibitor, which can cause hyponatraemia (low blood sodium), so with me it could be sodium deficiency.
I don't think it's as bad as when I was taking an ACE inhibitor, which can cause hyponatraemia (low blood sodium), so with me it could be sodium deficiency.
That's the normal self protection reaction to muscle tears. If you had created damage in muscle fibers, then you are more likely to create far worse damage if you continue. After all, you are now working with fewer good muscle fibers. A rope that has 10 or 20% of its fibers torn is more likely to shear completely, which in a muscle would be a catastrophic event that would likely lead to death in past times.
So the first line that the body uses to get the creature to stop the use of the muscle is pain. Humans have developed the idiotic saying of "no pain, no gain", but in reality pain does and should mean STOP DOING THAT RIGHT NOW! (as always, there are exceptions as in Biggest Loser and possibly Alan Lights data.)
If the muscle pain doesn't stop you, then the next line is stiffness. When I was young and dumb, I had more than once exercised my arm biceps so much that I could only hold my arms at a 90 degree angle. That pretty much prevented me from "going through the pain" as I would surely have otherwise done, which could have resulted in total rupture.
The stiff muscle is, of course, harder.
I have to wonder if my reaction to all that was worse than the average person, which would make it part of my many pre-CFS predispositions.
So the first line that the body uses to get the creature to stop the use of the muscle is pain. Humans have developed the idiotic saying of "no pain, no gain", but in reality pain does and should mean STOP DOING THAT RIGHT NOW! (as always, there are exceptions as in Biggest Loser and possibly Alan Lights data.)
If the muscle pain doesn't stop you, then the next line is stiffness. When I was young and dumb, I had more than once exercised my arm biceps so much that I could only hold my arms at a 90 degree angle. That pretty much prevented me from "going through the pain" as I would surely have otherwise done, which could have resulted in total rupture.
The stiff muscle is, of course, harder.
I have to wonder if my reaction to all that was worse than the average person, which would make it part of my many pre-CFS predispositions.
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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.
It does not happen in my arms anymore. Something must have changed for the better there.