hi everyone ,, everytime i go to a dr. i leave feeling alone and afraid. i went to my reumy today for my fibro issues and we talked about my rsd. i asked her how to differentiate between rsd and pn she said with rsd you feel more of that deep burning not like a surface pain and also rsd is more sensitive to light touch and breezes. this is a dr. i realy trust at first she thought i had pn when all the other drs. said rsd. she didn't treat me for the rsd but she treated it as pn by putting me on lyrica 75 mg every6 hrs. she did more than any of my other drs. she said if it was periphael nero. this dose of lyrica would have it under conntrol but it's not . she wants my neuro to do trigger pt injections not with steroids but with anestetic to see if it does anything for my arm and hand.she referred me to a new pain mngmnt dr. for possible ganglion blks. i had 3 of these a yr ago 2 gave real short relief like 1-2 days the 3rd did nothing but i didn't even have the droopey face so i'm wondering if it was a good block to start. i wear a glove on my hand all the time now to protect it from touching things and breezes. any oppinions on any of this i 'm looking for input because i'm confused aggrivated and very sad i can't emphasize the sad part enough. this is all still new to me and the whole last yr has been one test after another and a bunch of confused drs. since surgery was involved when rsd showed up. anyone know of good neuros and pain mangmnt dr. in the st. pete area of fl. itt's been stressful and as all of u know a big greiving process that isn't over yet . thanks for reading gail

Hi Gail!
I believe a lot of us probably more than not have all the same experiences that you my dear are going through. The sad, angry, afraid, alone feeling just sucks!! Today, I told my hubby to just leave me in our guest room and throw food at me!! He almost "lost it" and started LOL and then I started LOL but in reality, it does cause us many, many different emotions, stress, the pain is on going(Like our shadow) Gail, I had 3 ganglion nerve blocks done and all 3 didn't help one teeny bit. If you feel that they do help, even if only for a while, get them.. if not then see if your doc. can put you on a break through medication pill for pain. You mentioned your on lyrcia.It is something like neurontin...for nerve pain. I was so much in pain, tired yesterday, I cancelled my PT session! I used to be so energenic.. taking care of the elderly was my passion and my job. when I had to quit because of this RSD.. I was devastated! I had to have surgery for carpal tunnal, thought once it was done and over with.. swelling, pain.. etc. that I would of course be going back.. WRONG!!! I developed this RSD after the surgery! Please know this is all normal. some of us here are on antidepressents, pain meds. neurotin, lyrica etc. Just hang here with us.. we will all be here for ya hun! Love, Desi

I have RSD in my right arm, hand, back, neck, shoulders, pelvic area, right side, right foot and leg.

I have had 3 blocks also that put mine into remission along with PT and triggerpoint injections. My Dr. uses Lidocaine, Mericaine and/or Zylocaine in the injections. He has never used steroids because it takes several TPI's to help. I would let them try both. It sounds like she is trying to help you in some ways.

I do know those feelings. Like Desi said, I have had all of them and I think a lot of us do when we first start on the journey with RSD. It doesn't go away until you find a Dr. that is willing to help you deal with it and try and help you through it.

Councelling is a good thing to think about if you are not in it. I have been in it for 8 years but with me I also deal with major depression. I now have an implant in for depression which is doing nothing for me at the time. Depression is made worse by pain.

I am glad you found the forum here. There are a lot of good people here who will help you at least get through some of the loneliness that comes with the RSD.

i've had 4 surgeries on my right arm. When I first got the RSD I begged Drs. to cut my arm off. Some looked at me like I was nuts, others said no we'll get you through it and they did.

Don't give up on her helping you. It sounds like she is trying harder then most you have had. We all find help through different kinds of Drs. My help with RSD has came through my PCP, PA, Hand Surgeon and Anesteologist. With RSD it usually takes a team.

I hope you are getting some rest tonight and I hope you feel better tomorrow.

Remember, hang around girl.

Ada

Sorry you are going through this horrible time. I don't know where in FL this is or how close it is but it is a doctor that a friend gave to me and they helped her a lot.

www.rsdconsultants.com

It is Space Coast Neurology. They even have rental homes and discounted rates at hotels to offer patients who receive treatment. Hopefully they are close enough to help you. I'm in California, so hopefully one day I will have enough money to go see them myself.

Hugs.

desi, this is when my rsd flaired up after carpal tunnel surgery. i wish so much i wouldn't have had it. thanks to all of you for your support gail

Well then, Gail looks like we do have something in common! Gail, was your RSD caught early like mine? I wish I never had the CT surgery either I was due to have another surgery when this one healed up(Which turned into RSD) well, I was suppossed to have this surgery done on my left wrist, as the test showed I have CT in that one as well! As soon as my Ortho surgeon found out that this CT surgery was not going to heal, he said, you have RSD and I will not reccomend surgery on your left wrist! GOOD! LOL Here, turned out that I had more nerve damage in my left wrist then on my right wrist.. that I could not understand why my right wrist was hurting and not my left wrist?? maybe all along, I injured my wrist before the CT surgery and didn't even know?? am I making sense here?? anyway, Gail, I do HOPE THAT YOU GET THE HELP AND CARE THAT YOU SO DESERVE!! Love ya!! to you, Gail! Love, Desi

Hi Gail,
I know that we all know how you feel. Its so hard to deal with this disease. I feel all of those feelings on a daily basis.I thought that after 8 yrs that I should feel less depressed about the whole thing. I went to a new therapist 2 weeks ago and when she asked me what RSD was and how did I get it, I started to cry. I cried so hard I couldn't speak. She told me that I had suffered a great loss, like a death in the family. I had never thought of it that way. Its true though.We have lost so much and no one really understands. Besides auwful pain we have to put up with 24/7, no sleep, and the unbelivers, sometimes its the little things that bother me the most. This might sound crazy, but things like not being able to wear sandels, having to wear sneakers in the hot weather, not being able to go to the mall because it just makes me so tired. You are not alone here. I hope you feel better.

Sue K.

desi i also have ct in my left wrist and can you believe the jerkoff dr. that did the surgery on my r wrist is the one that said you may have rsd because of the after pain. he then said you need to have the 2nd one done too i told him noone is touching my left wrist he had the nerve to say yer gonna have to. that was the last time i ever saw him. he got mad when i told him the other drs i saw said he should have never done orthoscopic surgery because my wrist is to small. he just said i disagree with that and i've done hundreds he was an asshole. gail

sue , i miss the me that used to be she was happy secure, easy going, and a hard worker now i don't know what i am gail

Hi Gail,
Sorry to hear that you are going through all this. I think that many of us here have been to so many doctors with different opinions. I had 10 stellate ganglion blocks and some of them did work for a few hours. I don't know if they had any lasting effect. The last couple did not give any relief so the doctor suggested stopping them.
I used to wear a glove and still do when I have a major flare up. I have some of the cotton massage-type gloves and they feel good. I quit wearing them all the time so I could desensitize my hand. It also feels good if I soak my hands and legs in epsom salts.
I don't know any doctors in your area, I live in CA. Hope you find one you can trust.
Linmarie