I've always moved. I've always had repetitive movements my whole life. I can't sit still, I wish I could. I shake my leg, I move my fingers. At first I thought I was completely in control of them. Then, people told me I was doing my "air flute" playing when I didn't even realize I was doing it. That was a shock. The past few years I've been getting little spasms or something at night when I'm trying to sleep, which shock me awake. Or, if I try to suppress them, the feeling builds up inside of me until I go crazy. I call it bugs. I tell Brian (just Brian, because I've never admitted this to anyone before now, but I really have to come out of denial, so this is how I'm doing it), I tell Brian "make the bugs go away", and he'll rock me in bed, or quickly rubs his hands all over my body. That makes it go away, that feeling that I need to move.
But this morning, EARLY this morning, it went too far. It's happening in my sleep! Now that's just really not fair. I woke up at 5am this morning to every muscle in my right arm burning with pain. As I slowly came out of sleep, I realized that my arm kept going into full spasm/convulsions. I kept hoping it would stop, and the pain would go down, and I could go back to sleep, but now it's almost 8am, so clearly sleep won't be coming again this morning. I'm really tired because like most nights, I didn't get to sleep until 1:30am, because the bugs always keep me from going to sleep. The bugs have been keeping me up for years, sometimes as late as 3am! I put some of Leanne's wonderful sore muscle cream on my arm, and after ten or fifteen minutes it felt better. But then, since I was forcing my arm still, the bugs really built up!
In the three years I've known I have Asperger Syndrome, I thought these movements were what they call "stims", short for self-stimulating behavior. But in the past week, since I'm coming out of denial, I've been trying to learn more about myself. And the more I read about stims, I've learned that sometimes that description doesn't apply. I do stim, apparently, but most of what I thought were stims were this other spasming thing. I was even wondering earlier this week if it was simple partial seizures, since sometimes my arm and my foot on the same side of my body will move at the exact same time.
Anyway, I never understood the term "stimulating", since my movements were to get the bugs out, to get rid of the extra stimulation that was lurking in my body. I never figured it out until this morning. All my life, I thought I was making it all up, or just moving for fun, but doing it in my sleep, and until my arm is killer sore -- well, that means it's real and I need to stop denying it as well.
Fortunately, for some reason the answer was easy to find on the internet. I read descriptions, and it's not stimming, it's not Tourette's, it's not seizures (I don't think), but it is perfectly described by "tics". So, that's nice to know, at least I know what's going on. Oh, and the other good news is that I think I found a vitamin supplement that might help me with it! I'll have to run to the store today to try that.
Maybe this is a good thing. I've been trying to make the bugs calm down and to solve my insomnia for years, it's very important to me. Maybe this will finally help me figure it out. :-)
So, here's the running list of things I have that are co-morbid to (meaning also may accompany) my Aspergers. (Meaning things related to. I also have a messed up ankle and a huge blind spot in one eye, but those things aren't related. See what I mean? There are lots of other co-morbid conditions with Aspergers that I don't have, and am grateful I don't have, such as epilepsy, depression, and ADHD.)
Scotopic Sensitivity Syndrome
Digestive Intolerance of Gluten, Dairy, and possibly Soy
Central Auditory Processing Disorder
Synesthesia
Tics
Well, I'm going to go take some tylenol because my arm is still killing me and I can't type anymore. I can't believe I hurt my own arm in my sleep!
Well, have a great Tuesday.
Volcano!!
2 years ago
4 comments:
Have you considered restless leg syndrome? I know that can spread to other parts of your body like arms. Love all the pictures you have up on your blog. Have a Merry Christmas!!
Mia,
Thanks. It doesn't match all of the definition of RLS (which I got from wikipedia): "with RLS you feel an undescribable sensation in your legs that can most closely be compared to a burning, itching sensation in the muscles of the legs or arms."
I don't have any of those feelings.
However, the RLS site also says this: "Opioid detoxification has also recently been associated with provocation of RLS-like symptoms during withdrawal."
I finally admitted three weeks ago that I'm probably a person that shouldn't eat gluten, so I stopped at that time. I don't digest gluten, and it turns into an opiate in my system, so technically I'm in opiate withdrawal right now after being on opiates (meaning I ate wheat) all my life.
So, that might be why it's worse now and woke me up.
Thanks for the help. I'm sure it will help me in my research. :-)
If it's happening when you're asleep, then it's not a Tourette's related issue. RLS isn't necessarily painful -- sometimes it's just very annoying. Low blood iron levels can aggravate it, so in that regard a vitamin supplement may help.
BTW, you can ignore the nonsense about wheat gluten -- it does not really "turn into opiate", nor does it cause ADHD, AS, APD et cetera. Some people have gluten intolerance or coeliac in addition to ADHD, AS, TS or whatever, but there's no causality. Wheat does unhappy things in my gut too, but when I stick to a GF diet, the only thing that improves is my gut. I'm still the happy ticcy, APD, ADHD aspie person I've always been ... I just have an "ingrained problem"
You sure have my sympathies with the "bugs" -- I've been having (menopausal) hot flashes waking me up several times a night for a few months now, and I so miss a solid night's sleep!
Andrea,
Thanks for your comments. I'm sure you meant to be kind about them, but we might want to use the phrase "this is how it is for my body". I do not have RLS, nor do I have a low blood iron level (it's been tested recently.) So maybe it's not opiates, I don't really care. All I know is that the two nights I've lost a lot of sleep since I've been on this diet are the same two nights when I had a tad of wheat with my dinner. To me, that is a very important factor. I know gluten does not cause AS. But for some reason my body doesn't digest it, and stores it as fat, and is malnourished when I eat it, and my blood sugar drops to dangerous levels daily, and I have never ovulated without Clomid, and my AS symptoms are A LOT worse. So, we're different. As a matter of example, wheat does not make my "gut" uncomfortable in any way. That's probably why this took so long for me to figure out. Wheat affects my nervous system (a lot), but not my digestive system (that I can tell). So, we are opposite in that regard. Again, I appreciate that you're trying to help, but don't tell me that how it is with your body is how it is with my body. I've been believing people telling me that all my life (mostly doctors) and it never has proven true.
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