Pain Management Community

Although I don't have the answers you are looking for..i just wanted to let you know that I feel the exact same way you do. I'm physically, mentally and spiritually exhausted from RSD. I have it in my left hand and my left ankle and lower leg. And it is pure misery. If you need someone to talk to that understands this horrific battle, feel free to contact me. I know how pain affects every second of life. I'm exhausted from waking up with pain and going to sleep with pain.

Here is a good place to start -

http://www.rsds.org/aboutCRPS.html

I have been through many nerve blocks since I was dx'd in 1994. When I was first dx'd the Dr's told me I was making up my pain in my knee and foot. 4 months earlier I had a total knee replacement and tarsal tunnel surgery.

I went to Chicago where they at the time specialized in treating and diagnosing RSD. I was stage 3 at the time it was very severe.

Every time since then I had an injury or surgery it would flair up. I now only have RSD in my right foot and doing well with it.

Treatment is available seek out a pain management specialist who is also an anesthesiologist. Drs are not all aware of this condition sometimes we need to read up on it - print off the info and take it to your Drs. Good Luck

Thank you so much for responding! I am at an all time low. I went to an appointment with my primary doc yesturday. My husband was with me. This doc has known me for 20 yrs. I was in tears because I do not want to return to the pain doc that has caused me so much distress this yr. We even printed off 20 patient accounts of him pulling the same stuff on other patients. Our question to the doc was "can you provide us with a referral to another pain doc?" and "can you cover the meds if there is a interim between leaving the current doc and a new pain doc?". Guess what his answer was "I think you need to return for one more appointment at your current pain doc and get your meds for the next month." I am of a firm consistution that all doctors do is care only for themselves. I was so outraged. I also pulled back back out of whack over the weekend. I couldn't even sit strait in the chair yesturday. So he is going to have his nurse try to get me a referral today. I did my research over the weekend and found two local pain doctors that have excellent patient ratings. I gave him the name of those docs. However, my back was so bad and I knew I had to return to the jerk once again....so I bit my tongue and my pride and called to see if he could give me an epidural block sometime this week. To my surprise, they did it this morning for me. I don't understand it. The man is kind during procedure day but turns into Dr Jekel during office visits. What do you think is up with that? I am sure I will have to go through at least one more appointment with him....so I am going to do my very best to get in and out without punching him out. I am having so much trouble with this med cut. I am in agony. He asked me today, "so how is the new medication regime going?" Of course, this is while he has a needle in my back. I said it has been tough, but I am working through it. I mean, what else could I say. He is one of the weirdest people I have ever met. I am reading as much as I can about this disease. I have recently read that is some kind of neurological "fight or flight" response that manifests into the actual disease. I think that is why doctors can't put together. How a neurological event in your brain can manifest into a disease. This is why many say "it's all in your head." It starts out like that...but the disease itself is REAL! I totally feel I am in stage III right now. Of course many of the initial presentations are gone. The hot skin the blue color. Mostly now I just have swelling and unrelenting pain. I never got all the syptoms. Shiny skin, extra hair, thick nails. None of those. My skin is sore to the touch but not to extent where some people can't even let a bed sheet touch the skin. Let me know if you have gained any other info about the disease. I am trying to fill my mind with as much as possible. I have done quite a bit of research over the years. I recently aquired a physician text book about RSD. You can't believe the stuff that they teach these guys about this disease. And yes....they do teach them "it is all in our head." However, I have had a few sympathic blocks that worked well. So I know for sure it is RSD. Also got a definate diagnoses from the Mayo Clinic in Minnesota. I bought the textbook just so I could understand what these guys are thinking when they see us show up in their practice. Love to hear from you soon. We can vent together.

Thank you so much for responding. I have been to the site you suggested before. They do have a great deal of info. If you can read my response to the other post. I have recently come across so much info it is not funny. Stuff I never knew concerning RSD. Also the reason these doctors think "this is all in our head." I haven't been able to find a pain management specialist in my area that is also an anesthesiologist. So I am trying to at least find a pain doc who is well respected. It can't hurt. Feel free to stay in contact. Thanks again for caring enough to respond.

Hey lily772x. I don't know how we exchange e-mails from this site. If you wouldn't mind letting me know your e-mail, I will definately contact you.