My RSD
 

I hope this works. Am I in the RSD community? If so, I'd like to introduce myself. I was diagnosed with RSD about 5 years ago and never knew that a community for RSD existed. I also have multiple sclerosis. My RSD initiated in my arm after some nerve revision surgeries went terribly wrong. It's been a long and very painful road and the incision still hurts terribly. I have one surgical incision that is about seven inches long that hurts the worst. Please share your ideas how you handle this severe pain. It's Nice to be here.

Welcome...
 

Hiya,
Yes you are on the RSD community. Welcome to Neurotalk, I am so sorry about everything you are going through ((hugs))
Please let me introduce myself:
My name is Alison, I am nearly 13 years old and I suffer from RSD in my left leg and right arm. I first developed RSD in my leg on the 16th March 2007 after an ankle sprain. After 4 months of physiotherapists telling me to stop imagining the pain, I was diagnosed with RSD, I felt as though my life had just ended. Immediatley after diagnosis my PM doctor performed a "Guanethidine nerve block", which caused me to lose my balance (I can't walk my leg shoots out in front of me)
2 months later my PM doctor prescribed me "Amitriptyline" to try and help me sleep but I suffered from a nasty side effect of "blurred vision", this resulted in a knock to my right arm. My arm began to swell, I got the burning pain, colour changes etc. 2 weeks later, I was diagnosed with RSD in my arm. The RSD in my arm has been into remission, but the RSD keeps flaring up when the weather is cold etc.

So far I haven't found anything that helps with the pain. Are you on any pills? some tablets can help control pain and other symptoms. Other people find that physiotherapy helps.

Take care and if you need anything just ask
Thanks

Welcome!
 

Hi Hola,

Sometimes there seems to be nothing that helps, and other times I am able to at least calm them down by taking hot baths. Some people, however are unable to bath...I don't have sensitivity to outside stimulation much at all.

When my skin feels like it's badly burning I find fighting mine with moist heat helps. My symptoms seem to be worse this winter than they were during warmer days!!!!!

Anyways, good luck to you...I hope there is something out there that can at least take the edge off when you need some relief!

Please visit often, you will find great support here!

GHL

Hello Hola,
Welcome to the RSD forum.
What treatments have you tried already?

Hi
 

This storm has knocked me offline and I'm sorry for the delay in getting back. Thanks to all that have posted. I have tried stellate ganglion injections in the neck ( times 15) that only helped temporarily. I have tried Elavil and then Topamax. I tried some OT, ,such as the tens unit and some ultrasound therapy as well as some narcotics. Material hurts my arm and so does anyone touching it, yet no one understands this that knows me since the surgical incisions have healed. I had a terrible infection after the surgeries, yet the surgeon didn't believe the pain at first. One of the incisions is so long and on the inside of my arm that it's unavoidable touching it just by putting my arm to my side or getting dressed and wearing a simple shirt. I can't understand why it hurts with a simple breeze of air still. The ulnar nerve is something I would never get transplanted ever again. I wish I knew all of this before these horrific surgeries. I also had a fatty pad graft to the hand with a medial nerve relocation the same day as the ulnar nerve transplant. I suppose nerves should never be transplanted nor relocated, but now what to do for the RSD that terrorizes me every day? A weird thought is having a skin graft over the incision area. But I just don't know what to do yet. Thanks again everyone for understanding this complex disease and why it just won't leave us alone. For a while my nails grew considerably on that arm with a huge increase of hair growth, then the purple skin arrived, the blotchy skin and now the muscle atrophy despite any exercise. It hurts to the bone omg.

Hi
 

This storm has knocked me offline and I'm sorry for the delay in getting back. Thanks to all that have posted. I have tried stellate ganglion injections in the neck ( times 15) while under Morphine and placed on a radiographic table, but all of that radation worries me now, that only helped temporarily. I have tried Elavil and then Topamax. I tried some OT, ,such as the tens unit and some ultrasound therapy as well as some narcotics. Material hurts my arm and so does anyone touching it, yet no one understands this that knows me since the surgical incisions have healed. I had a terrible infection after the surgeries, yet the surgeon didn't believe the pain at first. One of the incisions is so long and on the inside of my arm that it's unavoidable touching it just by putting my arm to my side or getting dressed and wearing a simple shirt. I can't understand why it hurts with a simple breeze of air still. The ulnar nerve is something I would never get transplanted ever again. I wish I knew all of this before these horrific surgeries. I also had a fatty pad graft to the hand with a medial nerve relocation the same day as the ulnar nerve transplant. I suppose nerves should never be transplanted nor relocated, but now what to do for the RSD that terrorizes me every day? A weird thought is having a skin graft over the incision area. But I just don't know what to do yet. Thanks again everyone for understanding this complex disease and why it just won't leave us alone. For a while my nails grew considerably on that arm with a huge increase of hair growth, then the purple skin arrived, the blotchy skin and now the muscle atrophy despite any exercise. It hurts to the bone omg.

Hi Hola,
 

Welcome to the board.

You might ask your Dr. to give you a script for Lidocaine patches. They work pretty good. You could put one on the areas that hurt. You can use 3 of them 12 hours on and 12 off. I think they help a lot.

I have had the ulner nerve surgery, along with the Thoracic outlet, 2 rotator cuff surgeries and just had surgery to release a nerve on the middle finger of my right hand. All were done on my right arm and hand. I still have others to go but we wait until I can't deal with them no more. My left side I have had one surgery under my arm. The RSD was brought out with the TOS surgery but due to having blocks the other 5 times, it didn't spread. I have been lucky in that way.

I would ask for a block before any surgery that you might have to have to keep the RSD from spreading.

I'm sorry that you are in so much pain. I do know what it's like. I can remember when I first started out how bad it was. I became suicidal over it.

Please take care and I hope you start seeing some better days.

Ada

Ouch
 

You have been through a lot too, way too much. I think those nerve blocks probably helped, you're right because I don't think it's spread luckily. I had a paralyzed right side though and a droopy eye for a while and a runny nose with an arm that I couldn't move on it's own. I had to pick it up with my other arm for a while to move it around. Those lidocaine patches sound really good, thanks for that suggestion. I no longer go to that pain management clinic, but I will try to ask another doctor for those. I remember wearing some pain patches too for a while, they stuck to the skin, I wonder if those are the same things. They helped a lot and made the skin numb which was nice. The hard part was peeling them off, that hurt. I'm sorry that you are also dealing with so much pain. My elbow hurts so bad, where the major surgery was on that ulnar nerve as I type this and the arm looks crooked. I was thinking of a pain pump also. Well thanks again and I hope that you also find some extended relief from this nightmare of RSD. You all made me feel less alone with this situation. :hug:

so sorry
 

So sorry for your pain, I use a gel you need a script from custom meds now called the Snyder Center for Pain Pharmacology. It is fantastic. You dont have to have the pain of pulling the lidocaine patch off- I do love those thou too. you doctor will need to call the pharmacist there, Dr. Steve is how everyone knows him, and he will prepare a mixture for your specific type of pain. I have now been getting this gel script for over 3.5 years. I could not live with out it. Ithink it would be particuarly helpful for under your arm. Make sure the pharmacist is told that your injury is there as he will make an non sticky mixture of meds. Sorry you are suffering.CZ

Pharmacy is listed it is in Inverness, florida. private message me if you physican needs the number.