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Originally Posted by loretta
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
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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