Originally Posted by Lottie

Hi Courtney, Welcome! Sorry you are struggling so much. You have come to the right place. Lots of good people here who are willing to give support.-lottie

Originally Posted by AngieG

Hi, I stumbled across NT when searching for information re: 5 day Epideral treatments and SCS for CRPS. I live in the Chicago suburbs and Dr. Lubenow is one of my Doctors at Rush Medical in the city. He is pretty well known for treating RSD/CRPS.
My Sciatic nerve in my right leg was damaged in a hip surgery 2 years ago. I was temporarily paralyzed in my right leg. I've gotten most of the function back but My foot is still struggling along. I have only partial movement but signs of life still seem to be there.
I was diagnosed with CRPS about 8 weeks after the surgery. Pain in my right leg kept increasing to a number 9-10 pain especially at night and after several emergency room visits they admitted me. I was placed on IV pain meds there until they figured out what to do next. Several nerve blocks later, I entered a full day outpatient rehab program that was fantastic and I got back on my feet again. I still go to therapy, 3times/week. The biggest challenge in all of this is managing all the meds I'm on. Very,very high doses of Fentynal, Roxie, Lyrica, Amatryptilyn , and others. Though these meds keep me out of the emergency room and allow me to rehabilitate at therapy, I've begun to realize what the Docs have been telling me all along, that living life on these meds may not be a sustainable plan. But if not this route, where do we head?
I'm scheduled for a 5 day Epideral ,on Dec 16th in an attempt to switch from the Fentynal patch to a long acting pill. I'm very skeptical because they tried giving me the hydro-morph pill initially when they were weaning me off the IV pain meds way back in the beginning, and that strand of Opioid didn't work. I know between now and the 16th, I need to change my thinking on this. In order to get the CRPS to retreat, I need to convince my brain that it's possible. My attitude will need to get a lot better between now and then. (I'm working on it).
I'm here in the Forum to learn and discuss options with like minded folks.
We'll talk more soon, I'm sure.

Originally Posted by coldavis

Thank you Lottie! That means a lot to me! I had a really positive meeting with a disability doctor on Friday who thought my case was pretty cut and dry (but also said she didn't make any final decisions) so maybe things are looking up for me!

Courtney

Originally Posted by Stephaunne

Hello my name is Steve and I am 46. I was diagnosed with RSD in 2010. It took me 20 years of doctors visits until I went to a neurologist in Philadelphia PA.
My RSD caused me to lose my job as a nurse. I am on full disability. I can walk very short distances and for longer ones I have to use forearm crutches. The pain in my legs and lower back is bad at times that it takes my breath away.
I have pain in my hands and I get stiffness in my fingers my back and legs.

One of the best therapies for myself (self therapy) is kayaking. I go kayaking every other day for a few hours, it helps me get some exercise. I love to be in nature and this helps me relax.
I was going to my doctors for Lidocaine infusions and would have finished my treatments this past week but I received a call from my doctor and they told me that Medicare would not pay for the treatments any more.
My faith in God is really strong and I know that with him I am able to get through anything.
I hope to have conversations with a lot of people on here, I believe that if we ban together we can get through anything.
Steve

Originally Posted by Please Help

Hello I am new here... I have RSD about 7 years ago in my left arm from a car accident... I have the electric simulator in my back...Also I had a lower fusion in my L-4 L-5 and S-1 and S-3 in back....Had that two years ago.... Now out of now where in Jan. this year I woke up in pain..I get numbness down both of my legs and my arms.. Get pain in my lower back where it's hard for me to walk, sit and even stand...Went to the doctors and they said it could be Fibro???? It's been six mos about and still no better... Now the doctors say I could have an infection in my back since I have two different temperatures.... also said that I have a really bad flare up???? I was just wondering if anyone else is experiencing this at all .. Any help would be helpful..

Thank you

Originally Posted by jessiebell

Hello everyone,

I was diagnosed on my 13th birthday with CRPS Type 1 (formerly RSD) in my right foot. I had a soccer injury that involved a girl twice my size crushing my foot and then hitting that same foot a few days later. Looking back, I was always very sensitive to hot and cold and pain.

We went in for 2 MRI's, 3 X-rays and a few other tests thinking it was broken or i had torn a muscle, ligament or tendon. At this point it had only been a few weeks and we went to my pediatrician. Her husband, an orthopedic, had actually just talked with her a few days ago about "RSD" and some symptoms. So she sent me to him. My foot was cold, I couldn't walk, my foot turned blue, and i could sleep from the pain. He took one look at it and told me it was RSD and immediately put me on amitriptyline for sleep. That summer I relearned how to walk at the beach, per his suggestion as sand is easier to walk on and swimming would help. It was painful at first, but after a few months, i was able to walk again.

Honestly I can say I am very very fortunate to get an early diagnosis, at the time, my Dr was surprised since I was so young, but still I am glad I got treatment. i still have flair ups after injury (considering all the times Ive had them) but instead of medication I got to either my acupuncturist or my acupressurist and constantly rub or touch the area to desensitize it.

Originally Posted by Phaedra

Just thought I would share a little bit of how I ended up here and who I am. I am married. I have two grown children from previous relationships. I am or was a truck driver for 4 and 1/2 years. I was driving a bus at a well known Christian University. This is where I was at when I fell in the parking lot going down to the lower bus lot. This fall sprained the inside of my right ankle and tore the ligaments on the outside of my right ankle. I hit so hard on my right knee that It caused patella femoral maltracking problem, bursitis, chronic exertional compartment syndrome, and the MRI also showed a entrapped nerve in my knee. This is what caused the CRPS. Weather it was the damage to the ankle or to the knee that actually caused it, I don't know. I fell mid DEC. and only got a little better. It wasn't until I had the emg done in the first part of March that CRPS was even diagnosed by a orthopedic doctor ( not my doctor) in another city. I had to wait till the end of March to actually hear it from my doctor. Still waiting on the Pain Management Doctor don't get to go see him until Mid June. I so enjoy the waiting game that certain organizations like to force people to play. I have had a whole host of problems arise from this. Panic attacks, blood pressure issues, cycle problems, and of course spreading. I now feel this in both my legs and arms, I even feel it in my body. The newest thing is now my sugar likes to drop and make me sick. This is all new to me and have never had these kinds of issues. So now That I have shared my ugly story. What is next?

Originally Posted by ginnie

I am so sorry about your fall causing CRPS. I know how awful that is. I was lucky and only got PN from injury.
While you are waiting for pain management, look up Ketamine infusions. This is the latest being done for CRPS and it has a good track record. Hard to find places in the US that works with this. Tampa Bay hospital is one of them. This Ketamine has had remission reports, through JAMA which is a medical journal with articles from around the world. This mag. keeps up with the latest in research. You might want to ask you doctor when you go see him. If he is has education about this, he may recommend something like this. I wish you all the best. ginnie

Originally Posted by allentgamer

I have been a member here for a very long time, but actually never told the whole story of how I got RSD. Finally I put it down in video. So I decided maybe I should finally share it in this thread.
I have read all the stories, and my heart breaks for everyone. I will always be praying for all you

http://youtu.be/g5Q5msVJInk

Originally Posted by frequentfaller

Hi, I'm Jenn. I would have to write a novel to tell my entire story.
Firstly, I should note that I also suffer from severe Narcolepsy with Cataplexy. The wonderful sleep disorders team at Mayo Clinic in Jacksonville, Florida take great care of me.
I began having nerve entrapments - one after the other. After they healed with physical therapy, the pain increased. Long story short, I was diagnosed last month by my incredible anesthesiologist, with CRPS II. It's spread to my entire body, with autonomic testing done; and dystonia, at Mayo Clinic confirming all my symptoms but coming up with no name for my mystery pain.
Honestly, I'm a bit frightened after reading up on CRPS. Also, relieved. Relieved that I finally have a diagnosis, frightened and relieved (depending on the problem) that many issues I've dealt with for five years have been CRPS all along.
I don't use my laptop much due to the arm pain, but a sympathetic nerve block helped with range of motion. Because of this, my iPhone is my constant companion.
I'm 33, married (although my spouse gave up on me and not supportive in any way), have a six-year-old son with high-functioning Autism. I've been trapped like a rat in a cage, on SSDI since October 2010. My last day of work was January 23, 2008.
Well, I'm looking forward to lurking around a bit to absorb your insight and knowledge. Beside my health problems, I'm a friendly person with a great sense of humor. We need to laugh, right?
Thanks, everyone.