can not stop moving

smallfry · 05-07-2010, 11:13 PM

please let me know if anyone can not stop moving or contorting their bodies, even with surgical fusion, because of the pain? I can barely type. I can't communicate by computer or read because have to move too much and can not control movements of body well. want to know so much info and to talk to people. can't dial phone sometimes. i will get a tan and spill salt on myself. if u see a pretzel lady, say hi.

fmichael · 05-08-2010, 02:35 AM

Quote:

Originally Posted by smallfry

please let me know if anyone can not stop moving or contorting their bodies, even with surgical fusion, because of the pain? I can barely type. I can't communicate by computer or read because have to move too much and can not control movements of body well. want to know so much info and to talk to people. can't dial phone sometimes. i will get a tan and spill salt on myself. if u see a pretzel lady, say hi.

Hi.

Have you been on Baclofen? It's regarded by a lot of doctors as the best medication for CNS induced cramping. I'm on 50 mg./day along with up to 20 mg. of Marinol for my worst days, which really makes a difference for spasms. That said I know some people who have gone so far as to get implanted Baclofen pumps, but at least 9 years into this, I'm no where near that.

Mike

keep smilin · 05-08-2010, 07:52 AM

Quote:

Originally Posted by fmichael

Hi.

Have you been on Baclofen? It's regarded by a lot of doctors as the best medication for CNS induced cramping. I'm on 50 mg./day along with up to 20 mg. of Marinol for my worst days, which really makes a difference for spasms. That said I know some people who have gone so far as to get implanted Baclofen pumps, but at least 9 years into this, I'm no where near that.

Mike

I have much movement also..kinda new for me..~ 6mos. Is it due to the terribly pain or due to the fact its a CNS nerve illness??? It is worse at times an others, thinking fight or flight response..and worse in my lower body which is where my RSD started, rt. leg.

Hugz, Kathy

smallfry · 05-08-2010, 09:37 PM

Quote:

Originally Posted by keep smilin

I have much movement also..kinda new for me..~ 6mos. Is it due to the terribly pain or due to the fact its a CNS nerve illness??? It is worse at times an others, thinking fight or flight response..and worse in my lower body which is where my RSD started, rt. leg.

Hugz, Kathy

kathy,and everyone i guess its up to the drs to diagnose. some drs. say its too expensive to do testing. what is the test for cns. i don't feel cramping, just like i am on fire and in a vice. hmm -- maybe there is cramping and i can't tell, can you? mike gave info that i will defin. pass onto doc.
how are we supposed to type. too hard. this is the only way out of isolation. i am so sorry you all are suffering so much

smallfry · 05-08-2010, 10:00 PM

Quote:

Originally Posted by fmichael

Hi.

Have you been on Baclofen? It's regarded by a lot of doctors as the best medication for CNS induced cramping. I'm on 50 mg./day along with up to 20 mg. of Marinol for my worst days, which really makes a difference for spasms. That said I know some people who have gone so far as to get implanted Baclofen pumps, but at least 9 years into this, I'm no where near that.

Mike

thank you so much. i will mention it to my dr. i welcome the suggestion. so glad you are no where near implant.

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