Hi Janet and Welcome, You will find a lot of comfort and good information here on the forum. Even though we all are at different stages and react to different meds, we are a comfort for each other. I personally feel there is such a lack of knowledge among the medical profession, and I also feel fear is a factor because of so much litigation and so many different procedures can and do make us worse. So many Drs. really don't want to have us as patients.
I got RSD following surgery, but wasn't diagnosed for 4 years. It's been 14 years now and full body. 5 years ago I found a very compassionate Dr. -a psychiatrist, neurologist, and pharmacologist. He doesn't take insurance and I see him once a month $250 hr. He is compassionate, helped me thru some rough times. I respect him and he respects me. His knowledge and openness to treatment has kept me mobile and out of a wheelchair. I am crippled in my left hand (before this Dr.)
One way to find good RSD Dr. in your area is to look up RSDSA and put in your zip code. It will give you a support group phone number and name.Our support group in Phoenix is at Barrows Neurological Institute. Good place for support and Drs. names. Another website is rsdrx.com- a retired RSD Dr. still has his web site up-under puzzles are 140 questions and his answers. A lot of good information.
I believe most of us have weakened immune systems and my Dr. is encouraging me to get flu shot and h1n1 shot. I have a weakness in my chest.I never have taken the flu shot, but am going to this year.
Please know we care and want to be of support to you. Today I had a meltdown. Doesn't happen every week thank goodness, but today was pretty bad. High pain, etc. Your friend, loretta

Hi everyone,
I really want to thank you all for your posts, it really means alot to me that you would answer me. From what I've been reading this morning on the different posts---Im not like alot of you in the aspesct that Im unable to walk at all. Ive not walked in 2 years because the doctor that I first saw didnt want to listen to me & now Im either confined to my hospital bed or a wheelchair. I truly believe that if the first ortho that my doctor refered me to wouldve done a better "job" & listened to me that I would be able to walk now, but since I cant change the past, I have to live with where I am now. On rainy days thou that is really hard because the pain is as they say "out of the park". Ive never asked them for a "miracle cure"---all Ive ever asked them for was for some pain relief---you would think that I commited a major sin by asking for this, by the way I was looked at & swept out of their office. I still dont understand why they wont close their mouths & open their ears. Although both on are located in the same general area they have nothing to do with each other ---or so you wouldnt think so. lol lol
I dont live in a major city & doctors around here are really hard to find---especially "good" ones. I have 2 good doctors but neither one of them can help me in my current condition. They understand the pain that Im living with every day, but their hands are "tied" as to their helping me.
They dont "rush" me out of the office because they "overbook" their schedules---they spend time with me as a " real person"---which after seeing the ----what I like to call the "idiots" for so long, its really great to have someone that will atleast listen to me. Its also extremely hard around here to find a doctor that will take my insurance, so that closes alot of doors for me. I dont know if I said anything about my powered chair or not, but I got it after almost 2 months of fighting---but they have to wait on the "trough" for my leg before they can deliver it to me.
I cant exercise at all, I cant even stand the sheet on my leg, so it makes it extremely hard for most people to understand what Im going through---they think that they can "catch" it if they get to close, so they just stay away.
Ive had family tell me that I "enjoy my life too much", that I should "read a book", do a crossword puzzle, along with other things & that will make my pain all better. The thing that gets me is one of my family members was a nurse & she still tells me that reading a book, or doing crossword puzzles will take my pain away. Thats the thing that I dont understand. What happened to that old phrase--if you dont know what to say, then dont say anything at all??
Well I know that I have rambled on enough, because Ive had to shift positions in my bed too many times, so I will shut up for now---but hope to hear your opinions on this.
Thanks again for the comforting words because I dont get them from any of my family & they sure do mean alot.
Hope that you are having "dry" weather, because we are not. OUCH!!! Hate the rain.
Janet

Dear Janet,

I agree with the others - don't hesitate to get another PM doctor. Many of us have been through a lot of them. Keep looking. If it doesn't feel right then it's not. The only doctor that has lasted a long time for me is my Boston doctor at St. Elizabeth's. I have searched all over RI for a good pain management doctor and I can't find one. I'm just not going to bother anymore.

My PCP writes my pain meds for me. My husband and I have been going to him for 20 and 15 years, respectively, and we have a great relationship with him and his staff. I had one snafu with an admin asst. that cost me an incredibly painful weekend without meds - it happens. I was ready to switch to another office. But in the end we worked out a way for me to stay with him and just communicate through another asst in his office. Do you or your husband have a PCP?

Read FMichael's message very carefully. He is incredibly smart and well informed - one of the best! He gave you some great info. You may want to also read the info he provided on another thread regarding pain management books and their authors - we were writing about pain psychologists.

I really wish you the best of luck. I know what you mean about wanting to cut off the offending limb because it hurts so bad. Unfortunately, my worst pain is in my head. Can't cut that off.....I'm learning to breathe and it really does make a difference for me.

XOXOX Sandy

Hi all,
I hope that I remember what ya'll wrote so that I can hopefully touch on all of it. Sure do hope so.
My hubby built me a thing to keep the sheet & blankets off my leg because my insurance wouldnt pay for me to get one, which doesnt surprise me---I guess that its considered a luxury.
I found another great website about crps---its rsdhope.org they also have tons of information about it. I even printed out some of that to show the doctor but hes not interested in that at all---not sure why. I dont know if its because I found it on my own or that I wont let him talk me into that stupid SCS.
I dont know if I said before or not but I had rsd in my right ankle 7 years ago. Went thru the casting & the nerve blocks---the last one I had made my toes forever numb in my right foot, but atleast I was able to walk. Then I think that it spread to my already bad back & then my left knee, so obviouosly my health over the past 7 years has gone down hill.
I read on the rsdhope.org website & in neurology now how nerver blocks for crps are the worst things that you can do, besides that Ive already had 14 sets of them & Im not having anymore. The first doc that did the nerve blocks told me that I shouldnt have anymore than 3 & he did 7 of them. Guess he forgot what he told me. lol lol
I also know 2 people that have the SCS & they are against it big time. One is one of the nurses that come to my house, she said that she would rather leave it implanted in her rather than go thru the surgery of having it removed & it hasnt worked in a long time. The other says that it makes him flop around like a fish---& thats one thing that I definitely dont need.
I also meant to ask you all if you have spasms? I get them so bad that it makes you want to scream. I get them more frequently when it rains.
I live in Tn & Ive typed in my zip code trying to find a doctor that specializes in crps----the closet one---right now I cant remember where it is, but I know that its not close. Riding in the car is shear agony for me. Hubby made me a cushion for my leg, so that the bumps arent as bad, & I ride in the back seat, havent been in the front seat since the morning of my accident.
I know that amputation is drastic----Ive been doing research on it & it says that its the worst thing to do, but sometimes I wonder if the phantom pain is as bad as what I go thru especially on rainy days. I wish that I could just remove my leg & put it in a corner for being so dang gone bad & causing me so much pain, but I know thats not realistic, but sometimes I sure do wish that I could.
I really appreciate the prayers & the well wishes from all of you, I cant tell you how much it means to me. I just wish that my family would be offering the support to me that ya'll are. I cant tell you what that would mean to me. I just dont know why they dont understand. Before this injury we all talked on a regular basis---whether it was on the phone or email, but now its like pulling teeth from an elephant---it just doesnt happen. Maybe one of these days they will surprise me & actually call to see how Im doing---not that Im going to hold my breath for that to happen---I would probably turn blue first.
I hope that ya'll had a good weekend & that you had good weather. NO rain today but chilly.
I guess thats about all I know for now, I really hope that I touched on what everyone wrote---if not Im sorry & will go back to see who I left out. Hope to hear from you soon.
Thanks again.
Janet