Reflex Sympathetic Dystrophy (RSD)

by **regan** on Fri May 15, 2009 4:31 pm

My wife has RSD in her whole left leg and in her right arm. She is about to just give up and live life in a wheelchair with her pain. She is in extreme pain and I don't really know want to do. She has had a stim implanted and it dosen't work. We really need a doctor that knows something about this disease. If anybody has any input on a good doctor in ANY state it would be greatly appreciated. Thank You ~ Concerned husband

by **Bussey** on Fri May 15, 2009 10:28 pm

Hello,
I'm sorry to hear that your wife is suffering this way. RSD is a terrible monster. What treatments has she had already? When was she diagnosed with RSD? Hopefully, these questions are not redundant.

I would suggest that you go to the web site called RSDhope. I believe there is a section on the homepage of that web site that lists doctors from various states that treat RSD patients.

Take care, and God bless you and your wife.

by **regan** on Sat May 16, 2009 10:19 am

She was diagnosed almost 1 year ago, the only treatment we have recieved is a stimulator that dosen't work and medication that dosen't work. They have tried many mixtures of meds and we have had many different results, but no good ones. Thank you very much for your input.

by **Bussey** on Sat May 16, 2009 10:43 am

Hello,
The spinal cord stimulator should never have been the doctor's first course of action. That was a mistake. Nerve blocks are normally the first attempts at trying to control the pain caused by RSD. In some cases, the nerve blocks cause the RSD to go into remission, even if it is only for a period of time. If the nerve blocks provide relief from the pain, they are sometimes repeated every 3 to 6 months. Has the Dr. ever mentioned nerve blocks to your wife?

Other than the pain, which is horrific, does your wife have any other symptoms as a result of the RSD? Is your wife in a wheelchair because of the pain? If she able to walk?

I hope to hear from you soon.

Bussey

by **regan** on Sat May 16, 2009 3:13 pm

My wife has had a spinal tap and 3 nerve blocks that took away the pain for only about 30 minutes each. she isn't in a wheelchair yet, she can walk, it just hurts her badly. The medication she is on now makes her sleep alot and she is very depressed. Our doctor has gone as far as he can, we need to find a doctor that will stick with her until it is under as much control as we can get it. Any help would be greatly appreciated. Thank you for your response.

by **Bussey** on Sat May 16, 2009 10:19 pm

Hello,
Has your wife been treated by a neurologist that specializes in the treatment of RSD? Also, is she being seen by a pain management Dr.? It definitely sounds like it is time to move on to a different Dr. or doctors. Have you searched the internet for doctors that specialize in the treatment of RSD and pain management in your area?

I found out after it was too late to be of any help to me, that there are different kinds of nerve blocks that can be used to attempt to treat the pain caused by RSD.

I am assuming that your wife has RSD in her legs, because it is so painful for her when she walks. I have a friend who has RSD in her legs. From her, I found out that the spinal cord stimulator is more helpful when someone is suffering from RSD in their upper body. She has had a morphine pump for lower body RSD for almost 20 years now. It is very helpful to her. Recently, she spoke of some type of change being made as it relates to her medication. I think it pertained to her having to have fewer refills of her medication. She was very happy with the change. Perhaps, this is something that can be discussed once your wife has transitioned to another Dr.

I should mention to you, that any type of surgery can cause the RSD to spread. However, for no apparent reasons, the RSD can spread. This I know from personal experience.

It is important that your wife be treated for her depression. Perhaps, the family Physician, or another specialist that is or will be treating your wife can recommend something for her.

I hope this information will be helpful. I will keep your wife in my prayers. Take care.

Bussey

by **puckster5** on Tue May 19, 2009 6:31 am

you can try the coastal bend chronic pain centre. i beleive it is in texas

by **alaska49** on Tue May 26, 2009 1:57 pm

Where are you located?

by **puckster5** on Tue May 26, 2009 2:18 pm

i am located in ontario, canada. i came across this info on the internet, but havent visited myself.
i have rsd in my right hand, for a year and a half. it feels like it is travelling up my arm. i go for guethedine nerve blocks once a week. it helps if only for a few days to relieve the pain. but, i also find they make you tired. along with the other meds. sometimes all i want to do is sleep.

by **Bussey** on Tue May 26, 2009 6:06 pm

HELLO regan,

HOW HAS YOUR WIFE BEEN DOING? HAS SHE MADE ANY PROGRESS IN FINDING A DOCTOR THAT TREATS RSD? I HAVE READ ALOT ABOUT THE RSDHOPE WEBSITE. YOU MAY BE ABLE TO FIND A DOCTOR USING THAT WEBSITE. HOW IS THE PAIN?

PLEASE POST AN UPDATE TO LET US KNOW HOW YOUR WIFE IS COMING ALONG.

BUSSEY