Thread: Newly diagnosed
View Single Post
Old 01-26-2014, 08:25 AM
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
Default

Hi Kristin and welcome.
I'm sorry you have rsd but you have found a great group of people to help you to deal with this disease. I have had rsd for almost three years and it has changed from day to day. And though everyone is different with what they experience with rsd, I will try to answer your questions from what I have been through with it.
1) I started out with a constant deep aching stabbing cold pain for the first year and a half. The I got occasional hot burning pains mainly in my hands and feet. Those pains come and go. I also get pain when my skin or bones are touched due to the rsd spread and fibromyalgia that I got two years after rsd.
2)My pain level changes everyday. In the beginning it was an eight to a nine. Then after a year it was a six to a seven. Then after two years it was back to an eight to a nine again.
3)When I over do it my pain level rises and I am wiped out for at least two days afterwards and have increased pain. I also get coldness in my rsd hand when I use it too much like when I type. I get burning in my feet when I walk on them too much. It's the total opposite, but there is no rhyme or reason with rsd. I use a heating pad for for situations and that seems to help.
4)The symptoms of mine changes everyday and are at different pain levels everyday. So I just try to take it a day at a time and not focus on yesterday or tomorrow. I just think about what I am dealing with today. Otherwise it gets too overwhelming.
5)RSD can cause insomnia. I rarely sleep because of rsd and the pain it causes so I watch tv or read a book until I can fall asleep.
6)RSD can cause depression, though I had depression before rsd. It has gotten much worse since I got rsd. Seeing a psychiatrist helps me with that. I also see a pm dr and neurologist to help manage pain. I have had eight nerveblocks but they mainly helped with appearance and not so much the pain. Prednisone helped more with pain and getting some of my range of motion back, but my wrist and fingers are locked up still. I had to stop taking it after a few months because of side effects. I take other pain meds now, but am also trying to wean off of them because they are causing me problems with my stomach. My pm dr wanted me to get a SCS, but my neurologist and gp and psychiatrist said not to do it because of chance of infection and increase anxiety so I didn't do it. Surgery can cause rsd spread and I didn't want to take that chance. Others have had it done though and said it helped. If I were you, I would get several opinions at least before you get that done. And accupuncture caused spread too. But some people say that that helped them. Everyone is different so you have to get to know your body and what works for you in dealing with the pain rsd can cause it.
I hope you will be okay and will pray that you and everyone else here goes into remission. Take care.
Sincerely, Renee.
__________________
RSD ME
.
RSD ME is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AZ-Di (01-26-2014)