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Muscular Dystrophy therapy?


Min

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So he wants me to get some therapy for my MD (nemaline myopathy...pretty much no info on my type so there's no treatment for it) and I was wondering what this would be like?  Is it like physical therapy?  I had that as a kid, it wasn't bad.

He also wants me to wear braces on my ankles as I have a weird gait, and said something so small as an athelete's brace could help.  I've tried the big bulky ones before and it made it more painful than usual to walk so I ended up not wearing them, else I wouldn't go anywhere.  Anyone know anything about this?

I asked about what meds I could use for my all over body aches (I get joint pain because my muscles are so weak) and he said pretty much only aleve or advil, because of the big vioxx scare and all that.  Have any of you had luck with any other med that doesn't have side effects that might kill me?

I think that's all.  I'm tired just typing this. ;)

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I asked about what meds I could use for my all over body aches (I get joint pain because my muscles are so weak) and he said pretty much only aleve or advil, because of the big vioxx scare and all that.  Have any of you had luck with any other med that doesn't have side effects that might kill me?

I think that's all.  I'm tired just typing this. ;)

sorry i don't know anything about the therapy you mentioned...

BUT, i have arthritis and my doc lets me take celebrex.  it's related to vioxx and bextra, but didn't get pulled.  my doc is *super* conservative about pain meds and med side effects, so i guess he and the FDA think it's safe.  they just started a 4 year study to examine the effects of aleve, advil and celbrex on the heart, but er... my pain won't wait for 4 years.  some people think that advil and aleve may have mild vioxx like effects on the heart... and some people think the vioxx thing was over blown and want their fucking pain meds back.

i tried taking rx aleve (naprosen or however you spell it) but it tore my stomache to bits and didn't work that well on the pain.

celebrex is a lot easier on my stomach and MUCH more effective for the pain.

all meds have their risks, and i tend to be an FDA doubter... but the FDA left us with joint pain our celebrex, and damnit, i'm going to take it because it works and without it i can't sleep b/c of the pain and i shuffle like an old lady.

viva la celebrex!

er, ok.  it's late.

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he told me he wouldn't rx me celebrex..he's afraid cause of the other meds.

i take naproxen for my back, i had two back surgeries (scoliosis) and still have pain.  but i was wondering if there's anything specific that i could take that's not like vioxx or celebrex.  i already have heart problems and really don't want to take them.

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he told me he wouldn't rx me celebrex..he's afraid cause of the other meds.

i take naproxen for my back, i had two back surgeries (scoliosis) and still have pain.  but i was wondering if there's anything specific that i could take that's not like vioxx or celebrex.  i already have heart problems and really don't want to take them.

ah, ok.  i didn't know you already had heart problems.

hm.  i think for pain if you can't do NSAIDs the next step is usually an opiate based pain med... though docs are usually weary to give these to young people for chronic pain because they're addictive and hard on the liver. 

i do take one other thing for pain, and this is going to sound silly.  i read about it in a book by an MD about chronic fatigue (which causes joint pain.)  tart cherries contain anthocyanins.  this stuff makes them red, and also has antioxidant and anti inflamitory properties.  heh.  i know, this sounds silly.  so, i um, drink tart cherry juice every day.  it's sour.  from whole foods.  i know it's weird... but i figure the worst than can happen is um, i drink juice.  (and the cranberry juice thing did work for my UTIs so...)

anyway, i'm sorry i can't reccomend a specific pain med.  hopefully someone else will come along with more knowledge of pain meds.

i'm sorry you're in pain.  pain sucks.  a lot. 

best of luck to you.

penny

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i just had a thought (while researching pain meds for another type of pain problem)... whay about lyrica?

i know it's for neuropathic pain... but maybe? 

i dunno, it's worth googling and asking your doctor about maybe?

i started to try and do so research on it for you, but i don't know anything about muscular dystrophy so i'm way out of my league here. 

(sorry for yet another reply that's not from personal experience.)

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