I can't believe that I haven't joined this forum before today. I've had RSD for seven months -- since June 12th. I had ankle surgery and woke up with EXTREME BURNING pain. While I'm sorry to hear that anyone else has this terrible disease, I'm so glad that everyone is here. I've had two failed nerve blocks, and I won't have any more. I've done months of physical therapy to no avail. The whole bottom of my right foot is numb, except for the burning, stabbing, electrical shooting pain combined with bone crushing pain and ice running through my foot. Gosh, RSD sucks. Faith in the Lord is truly the only thing that keeps me sane. Well, faith in Jesus and lots of Neurontin! hehehe I take 7200 mg of Neurontin, plus Vicodin, for the nerve pain. I also take Cymbalta for depression. I've just started Topomax since I still have considerable pain. For me, the best thing that's worked is Neurontin even though I have side effects like poor concentration and memory loss. I'm home on long-term disability through my now former employer, and I'm waiting to hear about SSDI (I should hear by March).

I hope your battle with RSD ends with you victorious! I've been reading the threads for two hours, much to my husband's dismay. I can't wait to read more!
Wordgirl -- Word Up!

Hello Wordgirl!

Although I am sorry that you have this dreaded RSD, I can tell you that you have found the most caring and sharing place for support that I've seen anywhere on the Internet. There are many well informed people here to communicate with and find the support you will need in this battle. Welcome, and keep the faith!

Best regards,

EJ

Welcome to the boards! Glad you found your way here and I look forward to "seeing" you around!

Hugs,

Karen

Welcome to the group. I just joined last week and have found EVERYONE extremely helpfull and easily willing to interject and help. In a pleasantly strange way, I feel very at home on this list. Finally, I can relate with people who have already been there, done that. I am looking forward to all that I have to learn!

The GABA-pentene meds didn't work for me; felt more stupid than I already am. Prayer is a good thing: have lots of callouses on my knees too! After gauging where I am at compared to others, I do feel a little guilty in that I did do reasonably well once starting stellate blocks at 6 weeks post-op. They probably are not the long term solution for me though, as my sympathetic symptoms are returning again, so #5 is around the corner I think. The RSD did kinda ruin me, I was a health care provider until this happened last April. Scared the heck out me me knowing what was coming down the road.

Welcome WordGirl,
I'm so sorry to hear about your RSD. Yes, it's wonderful you found us quite soon. You'll find such kind, compassionate, empathetic friends here. We have a lot of the same symptoms, yet some are more advanced than others, some full body, different lengths of times etc. My RSD came the day following breast biopsy, swollen arm, then frozen shoulder. Had about 100 pt and massage therapy. and went into remission for maybe a year. Then moved to the other shoulder. more pt. and massage. remission for a year. Then nerve pull in left hand while water skiing. all downhill.full body now 12 years. I have a great neurologist, psychiatrist, and pharmacologist all in one Doc. Was on 3200 mg. neurotin to stop the electrical jolts, jerks, stabs, spasms. Got much cheaper at Costco, saved $100 Switched over to the newer drug Lyrica and found it worked better on pain.Was on 400 mg. and not trying to taper off. Both Drugs have weight gain as a little bad bonus. I take Cymbalta, Vicodin. 6 a day and Ambien CR for sleeo and a anti-anxiety drug Lorazepam 2 mg. 3xday. Oh and 2 blood pressure meds. RSD is an autotomic disorder, effecting the organs than are involuntary. That means we sweat and then can be cold , our blood pressure can be high, and then drop real low. circulation -burning hands and feet, and then ice cold hands and feet. It's like the fight or flight syndrome. The sympathetic nervous system goes one direction and the parasympathetic goes the opposite, so the body is constantly trying to keep balanced. I monitor my blood pressure dailey. last night it was 91/53 and this morning 145//85 and tonight 150/94 I passed out over an hour one morning and bp was 60/40 Was in icu 4 days.
I've never heard of anyone over 3600 on Neurotin before. You must be knocked out most of the time. I had a hard time word searching, forgetting, starting sentences over again. sleepy. Wow, that's a lot.

I hope all works out well for your SSDI. That will be wonderful. Don't forget to ask your Dr. for a letter to DMV so you can get a handicap packard for your window. Helps so much for the store etc.I'm going to apply for SSD, I can work anymore. Hope it's not a hassle, I'll get an attorney if it is. I might just start out with one.My daughter is a court reporter. She'll know a good one.
Keep in touch and let us know how you are doing? Stay away from flu. If we get sick, it causes a flare up in RSD and that's not fun. Take care, Loretta Jewell

Welcome to the boards! You will find lots of good information and support here. This board can be such a comfort; you feel like we're all in this together! I was diagnosed with RSD in October of this year. I am currently on MSContin 30 twice a day with MSIR for breakthrough, Lexapro, Wellbutrin, Lyrica, and Klonopin. Already went through the sympathetic blocks with limited success and am going to be evaluated for a spinal cord stimulator (SCS around this board). Glad you found us and welcome to the group.
Lori Lee

I'm just going to repeat what everyone else has said. "This is a great place for support and information." We all are here for answers and support. I was diagnosed with RSD in 1989, now full body. However dreadful, we manage to survive. Welcome and all the best! Di

Hi.

Keep up the good fight.

Yeah, it's a lot of Neurontin -- I can't wait to come down from it, but the pain is already back up at 9 and I cried today (it's been awhile that it's been so bad that I actually cried!!). I'm really hopeful the Topamax will help, but it makes me sleepy, too. Thank goodness for my husband, Geno, and daughter, Zoe. They take care of me -- family is awesome. Have a blessed night, Wordgirl

Poor thing.....I am so sorry you are struggling so much right now. I hope the Topamax works for you as well. Give it time.....try to hang in there and over the next few days, you will begin to notice a slight improvement, then a little more, then you will feel like you can at least tolerate it. Topamax is proven very effective for many people with RSD. I hope and pray this is a quick process for you. The sleep may be a blissful escape for a short season while the meds work into your system.

I am SO glad you have your loving supportive family there with you. Let them love on you and DON'T feel guilt about receiving from them. They're only passing back to you what YOU have given THEM through the years. Please keep us posted on your progress. PM me ANY time.