Two interesting things happened this week:
(1) I finally met the physician I’d been referred to last October, and now I know why there was a seven-month wait on appointments. The guy is both competent and humane (like Tod Worner, but a different guy). I like that in a doctor.
(2) I’d been planning to tell him everything’s fine now, but actually it’s not fine. I’ve had a wind-up of fatigue and the same kind of pain I was having last fall — it was still fairly mild on Thursday, but is getting more rather than less intense.
The purpose of this post is to try to find out if anyone else has experienced the thing I’m getting. The rheumatologist has never heard of it, and he’s pretty experienced in his field, and he is also familiar with the types of pain associated with disorders outside his field. The internet isn’t giving up much so far, either. But rare disorders exist, and so conceivably there are people in the world who either get this thing or have seen it in their practice.
If you are that person, my e-mail is below, scroll down to the bottom.
If you are not that person, help yourself to the blog discussion group for the purpose of general commiserating or talking about the thing you get that isn’t like my thing but you still want to talk about it. Please do not e-mail me with those well-meant comments, because I am notoriously bad at keeping up with my e-mail as it is.
Do please share this post around, though. There are sharing buttons below to make that easy for you.
(Please assure helpful strangers that I’m not interested in talking about religion or politics with them. My rheumatologist isn’t really into that. This is strictly a medical-bleg.)
The syndrome we’re talking about is this:
(a) Muscle pain. Not joints, not skin, not your stomach or your sinuses, none of that. Feels like it’s muscles.
(b) Aching predominates, some burning, and the odd needle-like stab.
(c) Affects muscles that have been recently exercised (in the past day or two). So usually legs, since I’m a person who walks, but if I did an abdominal workout it’ll be abs as well, if I did a lot of upper body stuff it could be arms or shoulders, etc etc. It is utterly unlike normal post-exercise muscle soreness. Do not make me lecture you on how experienced I am with the normal stuff. It is not that. Not. at. all.
(d) The pain only comes on when the muscle is at rest. (I get some calf pain with use, but let’s ignore that since it’s distracting. I want to focus on the more perplexing stuff.) By “at rest” I mean when the muscle is relaxed, for example if you’re sitting down your legs might be relaxed even if your upper body is engaged in some activity. So it’s particularly noticeable when laying down during the day for some reason, or when going to bed, but it certainly does not require the whole body to be relaxed. Time of day is irrelevant. The key factor is that the muscle that starts hurting is not presently doing any work.
(e) The pain is temporarily relieved by movement, stretching, or pressure, but returns as soon as the muscle is again completely at rest.
(So if I’m sitting and my leg starts to hurt, I can fidget and the pain goes away. As soon as I forget to fidget, it’ll come back. Unfortunately, one cannot fidget oneself to sleep.)This presentation is extremely consistent. It started intermittently about a year ago, became significantly problematic last fall, had largely gone away for six months, and has returned in exactly the same form as previously. This consistency is why I’m persuaded it’s a physiological problem that surely other people have experienced.
Some additional notes that may or may not be helpful:
(f) There is no correlation with mental state. Thinking or not thinking about it has no bearing on whether the pain shows up; being anxious or relaxed or distracted or you-name-it is irrelevant.
No relationship to menstrual cycle either. I haven’t detected any other certain associations, other than fatigue and exercise. (This prospect does not really keep me from exercising, because don’t be stupid, you need to exercise. But the sleep-deprivation? Yes, that will slow me down a lot.)
(g) Mine does respond to ibuprofen pretty well most of the time. (I try to avoid taking it habitually though; I only use it if I’m really desperate for sleep.)
(h) For those who are curious, yes my dysautonomia symptoms are ramping back up as well. So there does seem to be a strong correlation between when I’m feeling all that stuff and the pain-thing.
(i) In addition to the muscle pain, I also get random fasciculations along the same pattern, but they are not as prevalent. The muscle that is twitching is not a muscle that is hurting. (Probably because this particular thing involves muscles not hurting if they’re being used?)
(j) My diet is great and I take all the things and do all the things and present as a very healthy person. I have a happy and enjoyable life, including a loving family and many good friends.
For those of you who don’t know me personally, I pretty much live in the present. When something’s not bothering me, I promptly forget about it and move on and think everything’s fine now. Therefore I’m always a bit surprised and mildly insulted when symptoms come back later. (I thought you were gone. What are you doing here? Can’t you see I’m busy?)
Anyhow: If the description in (a) through (e) rings a bell with you, please e-mail me.
I can be reached at: currentresident [at] fitzes [dotcom].
Put something really obvious in the subject line such as answer to your bleg on “name that pain”, or I’ll accidentally delete you as spam. I get a lot of spam, so if your subject line is “hi” or “help” or “about your blog post” or “hot Russian singles want to sell you cheap Canadian Viagra” you’ll be cast into the outer darkness.