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Hi, Kate,
I took Tegretol (Carbamazepine) for a while and it was
helpful. Pain wasn't my primary complaint, though -- I had more pain then than
now, and it's intermittent. But it did help with general symptoms. My neuro said
it helps "quiet down" the nervous system. I stopped taking it because they have
to keep a watch on your liver functions with it. I don't mean to scare anyone --
I don't know what the parameters are for safety and long-tern usage. I know it's
used by epileptics, so some degree of long-term usage must be ok (best to
consult with a dr.). But I felt I would rather see if I could get by without
it.
It's hard to balance when and how far to push the body.
There's no improvement without some push beyond what feels comfortable.
But exercise and moving in certain ways can cause some muscles to spasm or
stiffen or just not feel right. Sometimes -- most often -- that's just a
temporary thing that settles down after exercise. My PT wanted me to ride an
exercise bike, but it was extremely uncomfortable. In the beginning, I could
hardly use my left hand to even to wash my hair. Any exercise I tried with it
seemed to send it into convulsions of sorts. So it was kind of a back-and-forth
thing -- working with it a little bit, then backing off, then trying again
another time.
I was hoping someone might have something more scientific to
point to. :-) There might be links to some studies about this at the TMA and
TMIC web sites -- there are tons of resources and articles behind some of the
links there (www.myelitis.org and www.myelitis.org/tmic respectively). I
need to dash off this morning or I'd take a few minutes and look around, but
maybe someone else knows of articles about this issue.
Barbara H.
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