New to RSD
 

Hi all. I was just "officially" dignosed with RSD last week even though ive known ive had it atleast the past 3 years. My nuero said I could go to a PM dr but at this time there is no treatment for it. I talked with an anesthesiologist and he said at the sound of my sympthomes is sounds advanced and to not go to a PM doc because the only thing they will do is injections and epidurals and that will not work. And i also do NOT do injections. This is all secondary after having a botched tos surgery. It has now spread to both arms and my face. What have some of you done for treatment? Is there any medication? Thanks.

Welcome Tos8 to the forum. Feel free to look around, rant, rave, etc. We are all in different stages of our rsd and everyone has something to add which is great.
I would recommend obtaining a pain dr. there are other options besides injections. Such as Medications, Ketamine, Tens unit, Stimulator, etc.

Anyway welcome to the group.:welcome_sign::welcome_sign:

Hello tos
 

Sorry you have to deal with RSD. I knew I was experiencing something bad for awhile, and just got diagnosed early last week. I tried Gabpentin, and felt terrible. Keep posting here, and asking questions, and I will too. There are alot of folks here who have alot of experience with this and may be able to help the both of us. I also know that TOS is lousy, and its not great when RSD complicates things. I have a very bad degeneration of my ankle, and two surgeries evidently kicked off my episode of this dang thing. I will be here right with you asking all the questions I can and doing all the research I can on line. Glad to meet you, but I am sorry for the circumstances. Be good to yourself. ginnie

Hi tos8,

I'm a TOS to RSD'er too.

I wouldn't rule out injections....a series of stellate ganglion blocks CAN be quite beneficial to people with our conditions. For me, the SGB's helped with my L arm symptoms, but the L arm stuff has never been my primary issue. They did nothing for the 'burning golf ball' just to the left of T1 that is my major complaint.

The nerve blocks don't do much for me long term (from the steroids), but I do get a few pain free hours from the lidocaine in them. I wish I could schedule one just before I go to a party or family occassion :p Even though there aren't lasting physical effects, I find it a positive experience just to 'remember' what a lack of severe pain feels like. Sometimes it gets me angry......if the right shot can make me feel better for a few hours, why won't docs who've blown me off and WC pay for tests or treatments to look for more lasting results. Mostly, it gets me hopeful that SOMETHING out there can help me. Maybe a radio frequency abblation ? Who knows.

I'm laughing a bit, in a sad way, about your comments about knowing you has RSD for years before getting the official dx. I had to play the same games to find docs who knew about TOS and then RSD. That frustration doesn't help pain levels !

Love the dog!

Hi Finz. If i would have told my nueroligist that i had RSD 3yrs ago he would have known then. But its been easier for me to be in denial about it i guess and even though ive known ive just never told any of my doctors. The only reason i got an official dx was because I had to ask him why im having autonomic problems with controlling my body temp and he right away said its do to RSD, secondary to the tos surgery. So he knew immedetly what was wrong with me without me even having to tell him.

I do have a quistion, what is everyone doing with summer here and trying to keep your body temp regulated? Last night I got so hot and my pain shot threw the roof with the air conditioners on and the fans blowing that it made me very sick and i had to go to bed for awhile to try and lower my temp.

My nueroligist told me to watch my envioroment, but im in my own house and still have a ton of difficulty.


Thanks everyone!

I am so glad u said that. Yes I know thatsounds funny but in aprili started having what I thought it was bad hot flashes over 30 a day. (had a hysterectomy several years ago with no hormone replacement) so I called the ob and started estrogen therapy. Didn't give it any thought that is was Crapping rsd.


QUOTE=tos8;891202]Hi Finz. If i would have told my nueroligist that i had RSD 3yrs ago he would have known then. But its been easier for me to be in denial about it i guess and even though ive known ive just never told any of my doctors. The only reason i got an official dx was because I had to ask him why im having autonomic problems with controlling my body temp and he right away said its do to RSD, secondary to the tos surgery. So he knew immedetly what was wrong with me without me even having to tell him.

I do have a quistion, what is everyone doing with summer here and trying to keep your body temp regulated? Last night I got so hot and my pain shot threw the roof with the air conditioners on and the fans blowing that it made me very sick and i had to go to bed for awhile to try and lower my temp.

My nueroligist told me to watch my envioroment, but im in my own house and still have a ton of difficulty.


Thanks everyone![/QUOTE]

Try taking a cool bath with Epsom Salts. It'll lower your body temp slightly, and (hopefully) the water will reduce your pain. When you're cold, then a warm bath...

considering ALIF lumbar fusion
 

I am a 31 year old female with DDD, 2 bulged discs, severe stenosis, unbearable pain, all other non-operative treatments have failed. I am considering ALIF lumbar fushion with a orthopedic surgeon. Anything I should be aware of before going into this?

Obvisly RSD can spread after you have a surgery do to irritating the nerves. I am also going to be having surgery and im afraid the RSD will spread to my torso, so im going to meet with my nuero and hopefully we can have a game plan post surg to try and start treating my RSD agressivly and then hopefully it will stop spreading and wont spread any futher post op.