hi

swelling - elevation of leg above heart. I had severe swelling at the beginning (2 years or so) where I developed pitting oedema from toes to half way up thighs - mum still has the measurements... (my big toe was 12cm in diameter etc). The same also happened in my arms. Even now adays with a wrecked lymph system my legs and arms still swell more if they are not elevated/ if I upset the RSD etc. Movement will help with lymph drainage as will some things like using a flotron - (but that is VERY painful) or lymph massage (also agony but mum ended up having to do it).

Desensitisation - just start doing it from the thigh down? then it would mean if the pain goes up her leg then that is still under control and you are not starting from the beginning again! which is so frustrating. (sorry answering the SKIP one here as well).

Spasms - really really painful. Mine twist, jerk, lock and jump around. I take diazipam, trihexyphenidryl and baclofen to reduce them. As someone said you can get rebound spasms from baclofen so it's always worth coming off the drug to see if that improves things or not. If it doesn't there are other muscle relaxants that can be used. Have you tried hot water and epsom salts? some RSDers swear by them. Also some of the anti convuslants help with spasms as well.

I personally wouldn't contact the hospital until Wednesday but that's just me.

Are you around this evening?

Love

Frogga xxxxx

I'm sorry to hear your daughter is having such troubles. I hope things have calmed down a bit by now?

I am one of the lucky ones... Baclofen has almost completely stopped my spasms. I had them in both legs from the knees down. Even my toes would do it. They had gotten so bad I kneed myself in the chin once, while asleep. Michael also spent many nights sleeping on our air mattress. He was sick of getting bruised up

I agree that there is a great chance that the quick withdrawal of the Baclofen might be to blame. I spent one weekend without mine, due to a slow postal delivery. (My local pharmacy either mails me or hand-delivers my meds to the door, it's wonderful) It was pure agony, and the muscle spasms returned with a vengeance. I'd hate to think your daughter was going through that.

My feet have been swelling frightfully over the last couple of months, to the point that last week my neurologist asked me to review the matter with my cardiologist. He saw me last night and said he would put me on a diuretic, but first wanted to do an untrasound of my legs to rule out any blood clots. I had the study done this afternoon - my apologies to all you NHS folks on the turn around times over here - and was unofficially advised by the tech that everything looked good.

So, does anyone have any experience in using diuretics with RSD induced swelling, and if so, how did it go?

Mike

P.S. My consumption of Baclofen has remained constant over the last 10 or 11 months.

P.P.S. Tayla, I just found your rather discouraging report from 21 September on Ali's earlier thread.

Oh Mike, sorry about that! Of course that is just my experience with diuretics.
Maybe it would be different for you

Sometimes I would just love to stick some pins into my skin and relieve the pressure that way!
Good luck
Tayla

Hi Andrea, Ali how did it go yesterday?