hi im new here but not new to rsd.. have had it a few years, im a littel worried about someting u said, u said ur on nueritin and lyrica. now that is comen meds for rsd treatmen, i m yself have been on bolth, buttttttttt never at the same time, y becuse lyrica is the sister drug to nuertin there very close to being the same thing,, so pls pls ask ur doc, y he has u on 2 of the same types of drugs, there very very simyular, aslo i did want to know that were i live in ny, there is a law suit going on again nuritin makers becuse it has never been aporved for treatment in rsd and some people have had bad reactions to it ,, that were only on it bnecuse of there rsd , soo pls pls be vry carfulle with nurtiine. nurtine can be taken up to 3600mgs a day. highest dose.pls ask ur doc y ur on boltha dn have him exsplane the diffrences between the two fo them to u, if he cant, id be a little scared,.. any onw with rsd quesitons pls feel free to ask me im not a pro at it, but have been threw the ringer and back as far as treatments docs and drugs go for it

No, I should clarify. The Neurontin is making me drowsy, so I am in the process of weaning off of the Neurontin and tapering on to the Lyrica. That's why I mentioned both. I had to stay on Neurontin until my insurance company (in their infinite wisdom) let me have Lyrica. Thanks for watching out, though!

First of all ... Hello and Welcome to Neurotalk!!

I am so sorry to hear that you also suffer from RSD . I have RSD in my left leg and right arm, I developed it when I was 12 years old, I am now 13. I had a Sympathetic nerve block when I was initially diagnosed with RSD and my doctor injected directly into the leg which has RSD. Unfortunately, I suffered from complications and ended up wheelchair bound for 13 months. I am only just starting to get out of the wheelchair now. It was only after I had the block that my mum went researching on the internet and found an article that states that you should NEVER inject directly into a limb that has RSD unless it's absolutely crucial. My PM doctor said he didn't know that at the time and he wont do any more nerve blocks because of it now.

I don't want to scare you in any means - I just wanted to make you aware that you shouldn't inject into an RSD limb in case that is what your doctor is wanting to do.

I wish you the very best of luck and if you need someone to talk to, I am here.

Alison

Hi Lori Lee,

I also am new here and I wanted to say to you that I have had the sympathetic nerve blocks and am so grateful I did. They caught mine in the first 3 months and yours even sooner and from all I know that is the best for trying to hold it at bay.
Please go ahead w/the blocks - I too, was scared but am so glad I did. I credit the Drs. that did this for me for controlling it as well as it is today almost a year later. The only thing I experienced with the shots was with the first one, ( I had 3 ) I did not eat enough of a carbohydrate substance breakfast and had a drop in sugar and blood pressure. It resolved with no problems, just had to wait it out in recovery longer than most. And, the 2nd & 3rd no problem at all
I have since changed hospitals and the new facility cannot believe I have had no spreadage and for that I am grateful. I think being on here is great for all of us and we can all help each other out. May I ask what part of Pa. are in that is where I am also.
Take Care & MAKE THAT APPOINTMENT TODAY!!!
Robin
QUOTE=llrn7470;404015]Hi all-I am new to the board and new to CRPS. I have just been diagnosed about three weeks ago after elective knee surgery and a nerve block for anesthesia (or lack there of, in my case). Anyway, my PMR doc is pushing for a sympathetic nerve block. Ironically, I am a neurosurgical ICU nurse by trade, so I am not afraid of the procedure itself. I am afraid of what it may or may not do for my condition. Any experiences or suggestions? Just got off steroids and am being trialed on Neurontin and Lyrica with Ultram-my mental state is shot due to all of these medications and all I can be is afraid. Hope someone feels like being the voice of reason for me.
Thanks for giving me a safe place to talk about this incredibly crappy condition with those who can relate.
Lori Lee[/QUOTE]

[/QUOTE]

Hi Robin,
Thanks for responding to my post. I don't know why I was so nervous, but now that I have had it done (yesterday), I'm really glad that I did. Even though it only lasted for 12 hours, those were the best! I actually felt good enough to do some desensitization, go out to dinner with my family, and do some increased weightbearing on my left leg. The strangest thing was that the whole thing seems like a magic trick. Not sure if they do these with everyone, but they put little stickies to take temperatures on each foot and 10 minutes after my injection you could see the temperature go up on my foot and my previously purple leg turn pink. It almost seemed like I was touching my leg for the first time because it gradually didn't have the horrible burning and tingling sensation. I'm scheduled for at least two more.
I find this board wonderful too. When you have a question about this weird, rare, disruptive disease, you have somewhere to turn and ask questions, get answers, and know that you are understood. Sometimes I look back at the old posts just to learn something new.
I'm in southwest PA, about an hour and fifteen minutes out of Pittsburgh. I actually work at UPMC and commute each day. It would be nice to have a friend on the board. I see you have northwest PA listed; are you really far up there or more in the middle? I went to college with some friends that lived in eastern PA. It's nice to meet you.
Lori Lee

Hi, Lori.
I'm glad you had such a good response from the blocks. Alot of people do. My husband Reed didn't have good response from the only one he got, but it's definitely worth a shot if there is any chance of relief. I'm really glad you are one of the lucky ones! Good luck and welcome!