Gitta
I know it is hard, but hang in there. I have rsd in my back. It started in my left foot and now covers both feet, legs, half a butt, (right half), and the center of my back to the shoulder blade. It can move and spread. I know it's hard to say that this pain is rsd. The burning and all that goes with rsd is like no other pain. I've had all the meds, 2 spinal cord stimulators, which caused the spread to my butt and back. I've just finished the Pain Pump trial, which is where they put a cathater into the spinal fluid in the back and hook you up to an external pump which puts morphine or duliudid into the spinal fluid. I'm getting my perm. one place Jan 19th. I wish I had never tried or had the scs. it caused the rsd to spread. The pain pump seems to be wonderful tho. I had 5 days of trial in the hospital. When we found the meds that worked for me, my pain went from a 7-9 a day down to maybe a 2. It's amazing how it stops pain. I've had rsd for over 5 years, and I feel that once I heal from surgery, I can go back to doing things like riding my horses, and maybe even work part time. I'm excited.
By the way, Denmark is the MOST BEAUTIFUL play on this planet. They also have the most beautiful people in the world. This comes from someone who has been lucky enough to live in Asia for 10 years, and Europe for 9.

Hugs to you and your son
Mary

Hi mary

Thank you for your answer and your nice words! I really hope it works out for you.....I really dont know how you all cope with this thing!

best wishes
Gitte

I had my RSD in my right hand, that spread up my arm into my neck and across my back,... it is real. I am going through Ketamine infusions right now and actually have the 3rd infusion of my 1st set tomorrow.

I just am wondering, has your son had an MRI done on his back? for over 10 years I have had painful attacks in my back and my "rsd" doc said it was just the RSd. The signs/siymptoms fit what I was feeling in rest of body. Then 6 months ago he said he wanted to do an MRI with contrast on my back. That the pain was getting worse, my activity levels were bottomed out over the pain and he want to double check to make sure nothing else was wrong. Now, I've had several (well enough MRI/ct scans/xrays/denisty/etc done to glow in the dark like an area 51 client) tests done throughout my life, every area I have complained of this pain has been checked, double, triple quadruple checked.... The results of this last mri proved that I had something far more wrong than just RSD in the back. Arachnoiditis. Its a bundling of the nerves around the spinal cord, in the spinal canal. Its dibilitating, its non treatable, or uncurable. ONly a few things can cause this, menigitis as a child, trauma/injury, or methatraxate injections into the spine. I have had none of these. The neuro I see says he has NEVER seen a case where one of the three things has never happened and someone suffer from this. My only options are a pain pump or HIGH levels of narcotics to help the pain. Please have his back thoroughly checked. This acrachnoiditis feels EXACTLY like my rsd and that is how its been treated since I was offically diagnosed. Most days my back pain is in the lower area but there are times the pain radiates all the way into my neck and shoulder blades. It will hit so fast and hard in my upper back that I loose my legs and breathing abilities instantly.
I just want to offer this info, because of my own experience. My RSD dr is awesome, he has literally given me some life back from my treatments and trust him better than all the other docs I see. He would have been doing something different for my back had he even known there was a chance of this disease in me. The one thing I do hope you prepare for, if you choose to look into this route, if you go to a neuro for an odd mri result on your son, the lil monster (dr) may try to say your child had menigitis and you never knew it. This was said to my mom and she about tore that neuro's head off and spit in his throat. She was highly offended by his demeanor and insinuations. Because of her own health she monitored my sis and I very carefully and took us to dr's anytime we seemed half sick. Unforturnately she has watched me grow into the medical case I am now and made sure to never ignore my complaints of pain like hers were ignored. I sure hope your son feels some relief soon.

Give some serious thought to the pain pump. I just had the inhospital trail and it took my pain from a 8-9 down to maybe a 2, It was hard to tell, because I was sick from the morphine before they changed it and put me on duiluid. It was great. The trial hurt so much less then the trial for the scs. I get the perm pump implanted Jan 19th. recovery from the surgery is a pain, but afterwards, you can drive, ride horses, in short, get a lot of your life back. One thing tho, the pump is only as good as your dr. If you have any questions, just pm me.

hugs
Mary

Im sorry to hear that you are not only suffering with RSD but also other pain... Yes my son has got a MR scan and x-ray and nothing to see and that their argument that its all in his head. But, there wasent anything to see on the MR scan and x-ray at his leg either...! Thank you for your concern.

Gitte

My RSD seems to be just spreading into the part of my back that was already bad. It's extremely frightening and everytime I feel it it seems likle the end but so far it really hasn't been too bad. I get a shot of terrible pain but it's been short lasting.

I've had the bad back for decades so I had plenty of time to beef up the muscles in the area. As long as I don't put it out again I might be OK.