Originally Posted by HeatherAnne

HI VANESSA!
Welcome! As you are, I am new to this forum but definitely not new to RSD. It sounds like you are definitely on the right track though with PT.

To introduce myself... I am HEATHER, and I'm not too much older than you, I'm going to be 21 in May. I have had RSD for 7 years now and I know what you are going through with being in high school and having RSD, so if you need a shoulder to lean on, let me know. It can be toughest when you are young with RSD becuase of your peers. I remember many people my age not understanding what it was and making fun etc..

SENSITIVITY... I remember my leg being so sensitive I couldn't sleep with sheets... One of my mom's friends with RSD recommended me using a VELUX or VELOUR blanket. It is extremely soft and so I wrapped myself in that in order to sleep. I remember using stupid things around the house that PT made me tap on my leg to make it not sensitive anymore. And I mean stupid and wierd things such as bottle caps, toothpicks, etc.. At the time of doing it I thought it was stupid but within a year I was able to touch my leg on a more constant basis. I still have days that happen that even a breeze hurts but its MUCH more manageable. PLUS I still do the whol desensitizing thing on my own and its like 5 years after I did that in PT...

BE POSITIVE and if you have any other questions... keep em coming

Originally Posted by InHisHands

Thanks, Heather.

That is what I try and do- rub stuff like stuffed animals, pillowcases, etc on my arm to work on desensitization. To sleep I wear a long sleeved shirt that isn't loose (so it doesn't run against my arms! ), but during the day I make myself do things that my arms dislike (like letting my arms feel fabrics/ breeze/ etc). To sleep I try and get as comfortable as I can get, to hopefully sleep better.

I understand what you're saying- rub silly things on the sensitive area so that (gradually) it will become not so hypersensitive. I am going to see if there are any more things like that I can do. Any ideas?!

For desensitization at PT I rub different textured desensitization sticks on my arms/ hands/ shoulders (I am in the "early" ones- there are much rougher ones that I look at and sometimes wonder WHEN I will actually be able to feel such a thing on my arms (!)... like the velcro! And sandpaper!...), and I do a pillowcase rub as well.

Heather, when you were first diagnosed what did you do? What were you told to do, as in areas of meds., PT, OT, etc? If you did PT, for how long until you realized that it wasn't "doing it", and you needed to move on? How much of a help was it to you? For how long did you go?

I am sure I have more questions for you... when I have time. Thanks for offering to help!

Originally Posted by babyboy39

Hello:

I have had RSD for the past year in my hand and wrist. Just recently for the past two weeks my muscles in my other arm have been twitching along with my legs and the back of my shoulder blades. This goes on various times throughout the day and night. Has anyone else had this problem? My doctor has told me that this is part of RSD.

Thanks

Originally Posted by aj822

Hey Babyboy39,
FYI... I too have had this twitching going on in my RSD leg just like you. It just started a few weeks ago. It doesn't matter if I am resting or using my leg. Just random twitching in various areas of my leg. Nothing I do makes it stop. I thought it might be from the nerve blocks I've had lately. I guess it is just part of this RSD.