Welcome to the forum. Sorry to hear that you are going through this.

You sound a lot like I did when I first started. I had TOS surgery and ended up with RSD. As Gigglebabe said, I have never heard of the sympatheomy working for anyone for any long length of time. Most people get worse because of them I do believe.

A lot of people are talking about the ketimine infusions on here. How are you having them done? My Dr. gave me ketamine shots along with other meds along the way. Triggerpoint injections they are called. It takes many of them but it was one way of getting it calmed down. I had the burning in my chest, neck, hands arms, back. Like you, I was a mess. I had 3 SGB's and they did help.

I had TOS surgery in 2000 but I do believe I already had the RSD and it just wasn't diagnosed until after the surgery. I was pretty bad off before the surgery.

As far as the disablility. Someone will most likely find this article for you that I am talking about. It's for Social Security for RSDS. I believe it's some new bills SS has passed. You can get SS on this. It might be a fight but it can be done.

As far as work, if you want to go back to work, do as one said and check into rehab. It will be a long battle and they might still tell you they can't get you back to work. That's what happened to my husband years ago. They tried to rehab him and then decided his health was too bad. I hope that won't be the case for you.

Welcome to the forum and you will get a lot of advice from these good people here. It seems like we have been through everything there is to go through at this point all together.

I am on Methadone for pain. Most people can't handle it. My dosage is very low but I have noticed that if I up my dosage my pain does pretty much go away for what time it's in my system. I am close to remission though. It took 7 years to get to where I am.

Like you though, I have neck and back problems. I was also diagnosed with Fibro, Cronic Pain Syndrome and Central Sensitation Syndrome around the same time as the RSD. The TOS Drs. in Denver diagnosed all of those. The reason I am telling you this is sometimes people have more going on then just the RSDS so you might want to address that ideal. Fibro comes a lot of times with RSD.

Lyrica is a new med out for nerve pain. People are swearing by that one.

Good luck and welcome again to the forum.

Ada

Thank you. I will ask my doc about the Lyrica on my next visit. Has anyone recovered completely from CRPS? Do you think I should put off the ketamine iusion until my condition becomes worse or do it now?

So sorry to hear you have been diagnosised with RSD, It does sound like you do have it. the blocks are very important early on as they can put you in nto remission. there is no cure. Ketamine is also a wonderful resource early one- although it doies not work for everyonte. use the search this forumn key for " ketamine" and you uwilll get all the information you need. I coulldnt makee it with out it but everyone is different. The key is to keep the pain managaeded. When the pain is uup RSD is spreading- it is very opportunistic. BE sure to read the intactabel handbook quide, it it indinsible. Meds alone are not enought. Thisis the best mannual I have ever found for our disorder, accepting it and managing it. Good luck and keep us posted.
CZ2007
Coma in Germany Ketamine, May
Booster Infusions continuing now.

Where do I find this intactabl handbook guide? So it sounds like the ketamine is working for you, but you still have some pain. Would you mind explaining your current condition before and after the infusion. Oh, and did you go into a hospital for days using a high dose or the low dose. I'm kinda confused on the infusion. I saw a video clip for one done in a hospital. Yet my doc wants to do one to me in his office from9am-3pm-is for 4-5days and let me go home at night with an IV bag.

Thanks for your help.