Hi Froggy,
" Know caps so sorry " let me know if this is to small yes sometimes i wear
a pair of real short silk shorts then I get so cold if I 'm put on the spot and I
have to wear a top I turn it inside out still misserable the sheet is so old
and so soft for some reason if my shoulder's are bare I guess the air thing
getting to shoulder blades and shoulder makes it better--crazy I know I tuck
the sheet around my breast off of my shoulders--the more I'm hearing I
really need to get off the med's I'm on how ? I was a manicurist by trade
can't use the left arm very well "know pressure" on it it will burn and hurt
you know, I will sure ask my Dr. about the new med what a night mare this is--home most of the time Dr. after Dr. found out more the last couple of
day's from all of you then the last 4 yr's.What does the clondine do? did
you have any side effects any of the med's you were taken or the ones
you are on now?
Thanks again
Susan

Hi Sarah

Thanks - that type face is much easier for me!

It sounds like you need to discover the sort of shops that I (if not the other people on this site) frequent. I live in very soft clothes -they are an absoloute must. I also live without seems...(sp?) as they really hurt.

I am not sure what you are like with pressure - but I wear skiing trousers (salopettes) now - to deal with the cold - they are fleece lined and lovely and warm (my legs are still ice cold but they don;t feel as cold - which is always good!!! I also wear the softest socks ever - they are made of very soft wool and go up to my knees - they are agony to get on but once they are on the screaming of my nerves calms down. Have you considered a "boob tube?" (I am not sure what they are called in the US - basically it's a piece of material that is circular and goes from your armpits to your waist/ hips. I tend to wear alot of fleece under my "real" clothes/ braces - mum made me a fleece neck warmer which goes down on to my chest and across my back - sort of like a poloneck without arms.. it works really well. Oh - also - if you soak your clothes in conditioner then they go REALLY soft.... it's totally the way forward - my carers soak some of my clothes - the ones that go next to my skin - I am trying to get over that bit - but failing atm.

It sounds like you need meds short term to get to grips with the pain - most of us on this site need meds to get through the day and to have any form of quality of life. It is hard - but we all live with this in some form or other. I really feel you should give the morhpine a try if it has been prescribed to you - if you don't try it you don't know whether it will work - it might not help the sensitivity but it might help other sorts of pain that you are getting - also unless the drs know how you react to it they won't know what the most succesful form of med will be for you --> so it might not help the sensitivity but it might help other parts.

You must miss your job a lot - it is a big change to go from being active and working to neither. I miss all the things I used to do before RSD - like play the double bass or be able to go out with my friends (I got this when I was 16).

Clonidine is (I think) a calcium channel blocker - I'm not quite sure how it works - but someone like buckweat (Roz) could tell you I'm sure. All I know is that it is often useful in reducing sensitivity. However, the only real way to improve it is working with a therapist on desensitisation - do you have OT's in the US? they are sort of like physios - but they deal with occupational therapy.

I don't get many side effects from my drugs - BUT - my drs have carefully tailored the doses and the different types to reduce side effects and to increase efficency. Basically, they allow me enough relief to study and for me to be able to go to lectures and to allow me to have the ADL (activities of daily living) done. They aren't a cure - but they give me a far higher quality of life than if I didn't take them. The worst side effects are constipation/ vomiting/ diarheeoa (why is that such a hard word to spell!?!?), fatigue/ sleepiness and spasms.

Hoep this helps a bit

Love

Froggaxxxxxxxxxxxxxx