Hello Becca!!
 

Nice to "meet" you, Becca. :welcome_sign: Wow, you've had RSD for a while...

Since you are around my age, I was wondering if I could ask you a few questions??


For how long did you have RSD before being diagnosed?

When you were first diagnosed, what did you do (what medication, PT, OT, etc)?

Were you told you would/ woudn't fully recover? What did the Doctors think of your case?

You mentioned you had a nerve block done. Did your Dr. try everything (s)he could before doing that? Was it sucessful? How much pain are you living with now? Is it getting better, worse or staying the same? Has it ever completely went away and then came back?

Sorry for so many questions. I hope you don't mind. I wanted to ask someone my age these questions to see what they did, and what they were told by their Dr.. Thanks! ;)

Just wanted to thank everyone who responded to my post! It is nice to meet you all, too. :) This board/ everyone on it has been a help to me in my search for answers to the many questions RSD brings.

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 :D

Thank you, Heather!
 

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!:eek: ), 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!

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

Twitching
 

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. :eek:

Hi AJ
Same thing, it doesn't matter if resting or not. The twitching just like the bolts burns deep bone aching spasms just comes and goes all day. It is mostly in my arm but definitely moves to my legs and the back of my shoulder blades. The scariest is when it twitches on left side of my chest. It startles me every time. I thought it might have been side effects from the drugs but I have been taking the same meds , and like my doctor informed it is just one more thing to deal with having RSD.
Thanks for responding, I feel a little better knowing I'm not alone.

I too have the cold and hot thing.... all I can feel is PAIN!!! I haven't been able to tell if something is cold or hot in a long time.

I have to have the air running to keep the humidity down in the house...plus I can't handle the heat.... but it's a vicious circle.... I can't stand the cold either.... Most comfortable for me is above 72 but below 75. It's nearly impossible to keep between those temps.

Right now I have a small (6 inch) fan sitting on the floor running but not pointed at me.... it's just to keep the air in my bedroom from getting to hot over night.... if it get's too cold... it's just close enough to me so that I can reach and turn it off.

As far as muscle twitches... YEP have those too... Sometimes they are visable to the eye... other times they are deep against the bone. I think I have had every muscle in my body twitch, spasm, or cramp at one time or another. Most times they are painful, sometimes just annoying....but ALWAYS twitching, spasming, or cramping some where in my body. It's really weird when my face does this and it hurts too!!!!

I'm at the 5+ year mark... full body with facial, scalp, and internal organ involvement.

I sincerely wish you the best and pray for low to no pain days for everyone!!!
:hug:
Abbie