The first thing my doctor said was that it looked like cancer and I'd probably lose my leg.
Obviously, I panicked. When he said RSD instead, I was relieved - foolish child who didn't understand what that meant that I was. The doctor was very clear - if treatment was aggressive and they hit on something that worked, my chances for remission - he always said remission, never cure- were good. The first therapies that I tried were nerve blocks and epidurals, then a TENS unit, PT, and an arthroscopy to check for any physical problems.....
The nerve blocks gave me relief for about a week each.
Nothing from the epidurals or TENS unit, and PT made things worse. The arthroscopy made things spread.
My doc gave me narcotics for the pain, and it helped, but I hated taking them, because they made me fuzzy.

I was lucky - about a year in, I went into spontaneous remission. I was thrilled.....until it came back with a vengeance about 6 months later, and hasn't let up since.

it wasn't until 4 years into my diagnosis that I got onto Neurontin, which has helped me with pain control quite a bit. To this day, every doctor I talk to is pretty clear on this - you have to be aggressive with treatment in the early stages and try for remission - it becomes harder as time goes on, and the damage can be more extensive as time goes on. I know that sounds bleak, but you CAN reach remission. We're all praying for you!

Over 20 yrs ago I had my left ulnar nerve transposed - 3 times! and a 4th operation after that.

the 1st surgery moved the nerve and with a few months the pain came back. The 2nd operation showed that the nerve was embedded in scar tissue again so they cleaned that up and put "permanent stitches" around the nerve to keep it in the new position.

Then the "permanent Stitches" popped! The 3rd operation was called the "Learmonth" procedure. They removed all the scar tissue and the mylelin sheath around the ulnar nerve, cut thru all the muscles, and placed the ulnar nerve near the median nerve. This surgery was very diffiucult and took over 9 months to recover from but it did the trick.

Except, a yr later the pain came back again. They first thought that I would just have to live with it. They didn't call it RSD back then. But then they decided to do exploratory to double check that the scar tissue didn't grow back. What they found was down by my wrist, fascia had grown around the ulnar nerve and was practically severing the nerve it was so tight. The removed it and that was the end of my surgeries.

It's over 20 yrs later and my left arm is doing great.

My RSD experience with with trapped nerves in my ankle not my elbow. I always thought it was strange that I had 2 nerve - entrapment issues with different nerves 20 yrs apart. Is it common for people to have multiple issues with nerves?

anyways, when I read that your husband had issues with his ulnar nerve and had a transposition, it made me think that maybe your he has scar tissue around the nerve like I did? Maybe another surgery could help?

I truly believe that the doctor I found to do th 3rd and 4th surgeries is the reason why I got better. The first 2 doctors were ok but when the pain came back they weren't interested in going back in again to see if anything else was going on. If I didn't find him, I don't know what would have happened to me.

Just wanted to share,
Peace and hope to you,
Lisa

Hey there - It's been a while now but from what I remember they worked pretty well and relieved him enough to tolerate therapy - For some reason they had to stop - Insurance? or Something new they were trying? I know shortly after that he went to Mayo for their pain managment/clinic....so that might have been why too.


They just started new nerve blocks (for the RSD in his arm) and that lasted 3 days althought the first day was rough - he could not use his arms but he had pain relief for 3 days and they were able to exercise him in PT quite well during that time. They SAY that the next block should last longer? Guess we'll see......

I was a very active 14 year old. I was in gymnastics 24 hours a week. The first week of June right after getting out of school, I possibly broke my foot. They are now debating whether it was broken because one doc said it wasn't and 2 said it was but they were both pointing in differnent places so I don't really know. Anyways, it hurt in the cast, but I thought it was from the injury. After getting out of the cast in July, they put me in a cam walker and told me to ween my way out of using it along with the crutches. Well, it took me a whole month to get off the crutches, but I didn't wanna use them when school started the second week in August (school starts soooooooo early in South Carolina). I shouldn't have stopped using crutches, but there was no way I was getting around my high school in crutches.

The doctors (not my regular ortho doc, he was out of town everytime I had an appointment) kept on saying that I was exagerating and babying my foot and I really needed to get out of the boot asap. I tried one day at school and felt like I was gonna DIE. It hurt SOOOOOOOOO bad. After that, I went back to the boot for a while longer. We kept on going to visit the docs and they kept on getting mad at me. My orthos nurse practictioner got really mad at me for not being back to normal stuff and back in gymnastics. Then after my regular ortho came back, he realized that after knowing me from 2 previous and minor injuries, I normally bounced right back and he knew that something was really wrong. After many tests and stuff, he diagnosed me with RSD. I didn't know what it was and he and my mom kept really quiet when I asked what it was and if it was curable. That scared me lots. I did tons of research and just cried when I finally understood what it was.

I then ended up going back to crutches for a few more months until January when RSD took over both legs. I then moved to a wheelchair. I have had one nerve block done. It ended up making the RSD worse so they didn't dare go for anymore of those. I had 2 creams for my feet. I don't remember exactly what was in the first one, but it didn't do anything for my foot (before spreading to other foot). It didn't help, but it didn't make it worse. I stopped the cream. Then I was given a second cream with a vasodiolater. Unfortunatly, it led to a SEVERE allergic reaction and left me with Steven Johnson's Syndrome. It took everyone awhile to diagnose me with that because of the RSD and regular ortho was out of town. All the other docs said it was a rash, cellulitis, dermatitis, nothing (hated that doc) and tons more. That slowed things down a bit.

I went through lots of physical therapy. One place didn't really do much. Another place my mom thought was good and was happy with, but I didn't feel like it was helping at all. It made the pain even more unbearable to where I had to miss school the next few days.

I'm about to start intense physical therapy in 3 days and go homebound from school. Its gonna be 35-40 hours a week for a month. I'm gonna be the second person to go through with it at this place. The person before me was also a kid and now she is able to roller skate and do almost everything she was able to do They feel good about me too. I'll let yall know how it goes.

Hey,

I was very lucky to be diagnosed within 2 weeks of symptoms starting. The first rhuematologist I saw told me that I was going to have to have my arm amputated (it was black and totally dead). However, I got admitted for inpatient physio, OT and hydro along with loads of meds helped me to get some use back in it. As my RSD spread and I got worse the doctors told mum that they thought that it would be dreadful for a couple of years and then improve (basically, two years of getting awful, 1 year of bed bound and then 2 years of recovery).

However, I'm now 5 years in and continuing to go downhill - but it might not be due to RSD.... (have since been diagnosed with several neuromuscular issues which don't help the rsd at all!)

I guess in the end no one knows - but physio DOES help... it gave me my arm back... it's a shame that whatever it is has ripped the use of it from me again, but PT and especially desensitisation are DEFINETLY worth doing.

Love

FRxxxxxxx

Oh, do let us know how it goes!! I am thinking of you and praying that this will go well for you. I sure hope so!!

Currently I go to PT 17 1/2 hours a week. Rough, but worth it... so I hope it'll work out for you, and I know how you feel.


Thank you for sharing your story.