Hi I'm Eileen. I did my general "hello" this AM but didn't have feedback, so I thought perhaps I had needed to come directly to this forum. Received dx this past Feb. - started in my left leg but it is spreading so quickly (right foot, both arms, shoulders and hands) - drs have decided to go straight to ketamine to grind things to a halt? It will be a 3-day infusion in hospital. Any advice? How will the procedure go? How will it feel? What should I expect? My sister will be with me - what should she expect? Just a few ?'s! I'm scared. It's all happened SO fast, then spread so fast ... trying to stay in control/calm ...

I am thrilled for you that you get the opportunity for Ketamine infusion. Many here are looking for the same proceedure. When you have it, please post your results, and all that happened. From my own research, this proceedure isn't bad to go through. Our military has been using this for our wounded vetrans. American Journal of Medicine has some good articles about it.
I had Ketamine infusion in my cervical spine. Nothings to it, and I got good results. Different use of the medicine, but same principal. I wish you all the best, and I will be looking for your posts. Try not to worry. This could be an answer for you. Go into it with a positive outlook, it will be OK. Lots of people will follow you, and ask where and who does the proceedure. This will benefit all of the RSD and CRPS patients. ginnie

Bonnie I wrote you a detailed response re Dr decision for Ketamine but it all disappeared when I hit submit - said I was not logged in - I must have timed out? Hands must rest - will redo answer later on! So sorry, but OW! My typing very slow-must figure out how not to lose answering again... Thanks Ginnie!

Ginnie, thanks so much for getting back to me. I've just had a rough period, a little easing off last few days, so thought I had better get going while the going was good, and get back to you. Everything is a go for this week May 7,8 & 9. I'll have the ketamine infusions over 3 days. I'm going to GW in DC-Dr.Chin is the Director of the Spine & Pain Clinic there & is my doctor. She didn't like that my RSD was spreading so fast plus I'm allergic to opioids - so methadone is the only thing that doesn't blow me up like a balloon so it left me with limited options. The neurontin helped a little, but nowhere close enough to help me be anywhere close to 'comfortable' at all. I have CIGNA health & was expecting a song and dance over the treatment she wanted (considering they spent several months denying all the tests asked for to make a diagnosis), but I'm thinking now that it's a hard fact, they've stopped fighting it. I know how lucky I am! I just about fell off the table when she said "We need to do ketamine asap." I've been reading how people go so many years having to try so many different blocks, pumps, etc. I really think it's the combo of my allergy to pain meds & the rapid progression that have me in this lucky position. I promise I will post how everything goes after I make it through this week. Hopefully, you will all hear the results by the end of the coming weekend. Please send lots of prayers/positive energy my way. I went through 5 spine surgeries 13 yrs ago & if it could go wrong, it did, which is probably why I'm so nervous. Please take care everyone! Eileen

I am going to be praying for you. I am very happy for you that you can get this Ketamine infusion. Keep us all posted. So many with RSD don't get that option, and I think it should be available to all those with RSD or CRPS. Its gonna work, have faith that it will. I will be waiting to hear from you. ginnie

I'm sorry because I never got back to you or anyone-I have just recently even bothered checking the site. I kind of fell into a big black hole and am only now struggling to get out again. I guess that I just felt like I 'failed'. I was the lucky one who got to have ketamine and I just didn't respond to it at all. Whatever could go wrong did and I couldn't bring myself to hurt anyone else's hopes for the treatment. It started right from just trying to get a vein-I mean 5-6 picks every day of the 3day course, and that just started me out the second story window, then it made me violently ill, then the second day in I got what they called the 'ketamine headache'. They kept trying to counteract everything each step along the way, but the whole point is to keep increasing the dose of ketamine they're putting in the infusion. The second course had to start at the last dose and continue to increase, fighting the headache and vomiting-determined to keep going-then the hallucinations came. I only remember it being horrible. They had to bring my sister into the treatment area to calm me, apparently I was certain they were all out to kill me ... all in all, it was just plain a very difficult experience. My body's still a mess, the stellate blocks don't work, they just make me flare. The pain is bad-still haven't found a pain med I'm not allergic to - the burning is less, or at least comes and goes. Just started me on blood pressure med because it's not stable, it's just all over the map. I'm booked for ketamine again in July, they feel I just have to try again even though I swore I wouldn't last year. This 'woe is me' is why I just couldn't bring myself to post about my ketamine experience - I didn't have the right to possibly hurt someone else's hope for the treatment. Maybe I'll never know why my body can't handle meds - I'm just trying to keep going one day at a time. So, can't type anymore for now as my arms are yelling. I just felt I owed you an apology for not sharing my story in posts and I hadn't climbed far enough out of myself to check in - I couldn't bear to discourage anyone. I pray you're doing okay.

Hey Ginnie,
I noticed on your location that your in Fl. I'd like to ask you how or do you get any triggers from the humidity?
I'm in the mountains of NC so I experience both cold and humid weather. Both cause me great discomfort spiking my pain level sometimes rather high. I do good as a weather forcaster, ha ha.
I was wondering how folks in other regions do...

MEL, So very sorry you had such a bad experience when you had such high hopes.
Thank you so much for sharing though. I've been given Lidocaine infusions
with no results and next step was/is to be Ketamine. I'd been debating
whether to go ahead (so many risks & expensive).
Please don't feel bad for sharing your experience, we have to learn from other's experiences even though someone else may have miraculous results!
I'm thankful stellate blocks work for me, in combination w/meds. & therapy.
I'm not in remission but managed to get some function.
We're here for you & we all need to help each other get out of that
"black hole". Di

I'm sorry you have rsd but welcome Mel. I hope you know that I'm always here if you need a friend.

Mel, so sorry you had such a difficult experience. Come here anytime, there are lots of good CRPSy friends here! ~ lottie