seeking others with post polio syndrome

[mopaul]

there are so few of us left, i'd like to discuss health issues and get suggestions.

mo

[mopinko]

1. hi mo

can't help except to say that i have a good fried battling this. he is just such a go getter of a person, and has battled all his life. he is a painter, and taught art for the park district here for many, many years.
he has to exercise every day to keep his muscles working. he lives with a lot of pain.
one thing that helped him a lot was to take some zoloft at bedtime. his muscles cramp up at night and cause him pain. this helped him a lot. after about 1 1/2 years, he got off, and did not get the symptoms back.

tell us more about what is going on, what helps and what doesn't. part of what is happening with me is damage done by west nile virus. there is some info emerging that is showing post west nile to be similar to post polio. maybe there are similar things that us other 'sickies' are dealing with that might be helpful.
how do you sleep?

[mopaul]

2. hey

i have insomnia quite a bit, and i take meds for high blood pressure, so they knock me out around noon for about an hour every day. but pain all day from sitting constantly, and when i do get up and move around, it can be problematic. just now starting a program of phys. ed. and rehab. hope it helps. used to be very physically active, but have really gone down hill the last 10 yrs. '

at least i can still whine and moan. there were a lot worse off than me by far. i'm taking nothing for it, for fear of getting hooked on more meds than i need.

we sickies are the only ones who understand each others whining and complaining, but most folks of course don't wanna hear it, and i don't blame them.

i can still get to most nightclubs to work in my band, but some aren't too easy to get into. and always seeking graphics jobs of some kind, a full time job in itself.

i'll study up on west nile virus, i know it's pretty nasty. i know of a lot of folks with various afflictions, but even cheerleaders get the blues i guess.

hang in there m p

[mopinko]

3. well, my completely uneducated advice

is to do whatever you can to fix that sleep. i am a new person after fixing mine. it is just so freaking important, and docs don't do/know shit about it.
can you take that med at bedtime, so it will knock you out at the right time? naps are very bad for sleep.
is the pain associated with muscle cramping? do they give muscle relaxants for that? part of what helped me was taking one at bedtime, so that i was not cramping up in my sleep. if i have any pain, they work better for me than any pain pills. those just f'ed me up.