hi Dianna, I hear your frustration and concern over this disease. It leaves a person just sitting there in shock when everything was fine previous to the trauma that occurred. I have had RSD now for almost 4 years.

Go the Department of Vocational Rehabilitation in your town. They can help with employment supports and signing up for any programs you might be eligible for. It is a free service and is all about assisting a person to obtain or keep their employment with their disability issues. You don't need a referral just get the initial appointment.

I will be praying for your pain level to be low and that you will find the right treatment. Do get things done in the beginning stages. As I am reading too that that is the best prognosis.

I keep jumping back and forth about the ketamine infusion. Have you done this yet? Do my symptoms sound familiar?

It really does sound like you have it Dianna. The best way that I have had to describe the pain is its like a porcupine, electrical feeling. The burning is just that as if you had been burned. My feet now are red and swell. I have RSD and lymphodema in my left foot.
I do need to keep the medication levels up. I take neurontin 1500mg a day and hydrocodone 750 (4) day.
I tried Methodone and could not do that one, I had slurred speech and not able to get my thoughts out. It wasn't a high either it was like a delay. I felt perfectly fine. Just couldn't talk so not able to work when I was in that state. I also tried cymbalta that did not work for me.
I have had 2 nerve blocks. The first did not work and they went in and did it directly into my leg rather than the spine. That helped a lot.
I am only now hearing about the Kenatine so I didn't realize that was a treatment.
How frutstrating Huh? I almost fear when night comes and the need to try to sleep. The worse time for me.

Hi there,
I am so sorry about what you are going through ((hugs)) I really do hope that things start looking up for you soon
it does sound like you have RSD.
I haven't had the Ketamine pump done. Most PM doctors will only consider doing the ketamine pump if all other treatments fail.
If you need anything just ask, I will try and help you if I can.

Take care
Love
Alison

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.

Thanks Alison, How long have you been in pain? What treatments are working for you? I'm so sorry you are going through this at such a young age, I hope you get out often with your friends. I feel like such a shut in these days. Good luck to you.

Hi there,
Many thanks for your reply. I haven't found any medications that work for me yet, I am currently taking Lyrica (Lyrica makes me sleepy), Baclofen and Tramadol. I don't get to see my friends that often, but my mom always makes sure that I can go out with my friends when I want to.
How are you??
Thanks
Alison

Hi Dianna

Has your PM dr tried any meds to control your pain? I know one member who has had amazing success with ketamine infusions since having RSD secondary to TOS. I take oral ketamine (100-150mg) per day though will not (currently) consider the coma because of other medical stuff that makes it more dangerous for me to have. I have RSD and generalised dystonia after a fall when I was 16 (I'm now 22) and have it full body. The ketamine has helped the most with the pain out of all the medication and sure beats oxycontin, MST, methadone, fentanyl, you know. Stuff like that. But in the end it can only be your choice whether to try it!!!

Best of luck and let me know if you want more info about oral ketamine.

Take care

Love

Frogga xxxxx