luthier,

There is a thread for scs and pain pumps, you should check them out. http://neurotalk.psychcentral.com/thread114132.html

I am sorry you have rsd. It is not fun and It must be hard to continue working 60 hours. Anyway please feel free to join the forums and keep us informed on how your doing.

I am not sure I am in the right place. I have sympathetic maintained pain syndrome. Just diagnosed. From what I understand this condition is very close to RSD, but I don't really understand how it all works. I have overlapping symptoms like allodynia, hyperalgesia and hyperesthesia. I do not have edema or distal extremity pain or problems....so the doctor is still narrowing down my exact diagnosis.

I have been called a liar, treated like ****, called a drug addict ect......but I am a survivor and I am not lowering my self worth just because people are uneducated related to pain syndromes.

I am a registered nurse and only saw one case of RSD.

Anyway, I had cervical ribs in my neck that were removed. The pain syndrome was triggered before my surgery when I had severe nerve compression due to crushed by the extra rib.

Both of my shoulders are involved, as I had surgery on both sides.

I recently moved and went to a terrible pain management MD.He called me a liar and did not give me a referral. Said I was drug seeking. Eventually I found another doctor and I processed the referral and made sure it got to new doctor. Now I have appointment on 16 of may.......but for now I am SUFFERING....OMG

I am trying to stay strong....brave. I am very very tired. hello everyone

Hello to all. Just found this site and wanted to contribute.

A little history on my condition-

In summer of 2011 I was involved in a minor mva(rear ended). I struck my left shoulder on door frame, left elbow struck arm rest. Might have hit head on door as well (no bruising or bumps). Originally diagnosed with sprain of pinkie and ulnar nerve neuropathy.

After about 9-10 months of cortisone shots to little finger and elbow (no improvement), a PRP shot in pinkie (no improvement), months of 2 different courses of physical therapy, couple of MRIs, and an EMG (which showed a compression of te nerve through the cubital tunnel I had a submuscular ulnar nerve transposition in Spring of 2012.

I have since had a couple more courses of OT including a session of work hardening that actually caused me to re-injure my elbow (as evident by another MRI) and was demote back to OT. Just recently the doctor sent me to a pain clinic to rule out CRPS. Well what do you know, it wasn't ruled out but added to my growing list of diagnosises (to include medial encondelytiyis(sp)).
My symptoms for CPRS are: swelling from basically elbow to fingertips during night time (will wake up swollen and then it takes about 2 days for swelling to go down-sometimes longer), change in skin colour, pain in elbow and fingers, numbness in pinkie and ring finger (alternates between pain and numbness), pins and needles in forearm, changes in tempatures to touch (elbow and forearm burning hot fingers ice cold).
Now have a stellate ganglion block scheduled for next week.

I have been out of work since the original accident.

It's nice to know I'm not crazy and there is actually something wrong with me that others are going through. Turns out a friend has this and is so bad they were talking about a spinal cord stimulator or drug pump.

Hi

I developed CRPS following wrist surgery in December 2012. Unfortunately, the surgery was on my dominant side. I have been going to seeing the surgeon and a pain specialist and going to physio.

I had a steroid injection in my shoulder. That resulted in one magical day during which I could make a nearly normal fist. I also had a stellate ganglion block which doesn't seem to have done much of anything.

I am slowly getting some range of motion back in my hand and wrist. However, I still have pain in my entire arm - well, basically from my neck through to my fingers.

I have been trying to stay positive and keep up with things at work despite the disruption of the doctor and physio appointments. Strangely, I am finding the increase in the range of motion discouraging because the pain is still the same. I guess I just thought the pain would start to go away when the mobility improved and seeing the mobility come back is making the pain seem more permanent.

So, I am struggling a bit with my motivation at the moment and trying to work up the energy to tackle the pile of work I brought home with me. Of course, I know I shouldn't complain. I haven't been dealing with this for very long.

I feel your frustration. I am in the same boat (except my injury is my non-dominant side. I go for my stellate ganglion block Monday morning.

Good luck with the block. My advice would be if they offer you sedation, take it. I don't like sedation so I did it with just a local. If I have to do it again, I will definitely use light sedation.

I hope the block works for you.

Thanks for sharing Kim. And in my opinion, five minutes of this is too long. I've had CRPS II for ten years. A back surgery that changed my life. I worked for many years with this and still do, but not anywhere near the pace I use to could do just a few years ago. I am lucky enough to be able to work my own hours. This has become a must. CRPS is unpredictable. Working with this condition is tough at best some days. Are you taking something like Neurontin for pain control, for neuropathic type pain? I know that for me at this point it would be hard, if not impossible to live without this med. Be good to yourself and rest when needed. Hang in there hon. All of this is fairly new for you. Keep doing research and you will hopefully find what works best for you. It seems we're all the same with this and yet we're all different.

I’ve made over a 100 posts and had yet to ever post here. It's long but here it goes, my CRPS II life as I know it.

When I was a young girl I slipped on some outdoor metal & concrete steps and a few days later experienced my first electric zingers of a bulging disc. Before my back surgery in 2004 I had seen and would get relief from chiropractors, but never saw a medical doctor when episodes arose.

On July 4, 2004 my mother passed away from a five year battle with breast cancer. My being only 36, an only child, my mother and I very close and my last living parent, this was a devastating loss for me. I was simultaneously going through a divorce. I have three children ages (at that time) 2, 11 & 15. My mother lived in West Texas and me in Colorado. 19 road trips to see her the year prior, and being with her for nearly a year up until her death, times were hard to say the least. After her death, I went back to Colo. bought a home, and back to TX I went to sell her home. While packing up the home she had lived in for 20 years, I started to go for runs in the mornings to try and burn off stress and the weight I had gain from my pregnancy a couple of years earlier, not to mention high cal road food for nearly a year too.

I started to have a nagging lower back ache. As each day passed it got so bad, I thought wow, this is really the most severe it’s ever been. I am out of state and put off an ER visit as long as possible. While at the ER the doc takes an x-ray, reads it, and comes to get me to show me the x-ray. He says “were you in a car accident?” I’m like nooooo. He tells me I have a very ruptured disc that is compressing my spine by 70 some odd percent and that I need ER Surgery, like right then. I say whoa doc, um.. I’m from out of state and I’m packing up my mom’s house, and well, yeah that’s not happening right this minute.

On December 4, 2004 I went in for an L5-S1 discectomy with an anticipated hospital stay of 3 days and a full recover in one year’s time. I woke up from surgery screaming in pain. Pain in my foot. My right foot could not tolerate even a sheet. My ankle felt shattered. I couldn’t move from the waist down for a week. I also could not lift my head after surgery for a week because the doc nicked my dura, and were afraid of a massive headache they couldn’t control. With this new condition, I really struggled to be a single parent of three, the youngest only two years old.

After a week, I slowly started to learn to walk again. The feeling running down my calf into my foot never came back. The pain I awoke from surgery did subside somewhat over the years, thank God! But today I have issues of spread, and tremors, and such. My limbs and fingers/toes get ICE cold. They turn all colors of the rainbow too.

Spread… over nearly ten years it has gone from right to left leg, then sporadically in my torso, and now very well into my arms and hands, neck and shoulders. Vision issues, intestinal issues, sensory (sound can be the worst) issues, joint problems.. if I kept going I would only sound like a hypochondriac. However all very real.

The upswing to my story is that I fell in love with a longtime friend, and it took five years of asking and I think my testing him, for me to say yes. I really wanted to be sure he knew what he was getting into. And much to my relief he is on board 100%. He waited me out and I am so happy for it. He gets it as much as anyone can who doesn’t have this. Life is funny with all it offers. We totally work around all things CRPS II. We keep a sense of humor.

When I first was Dx, three months after surgery, there was not hardly anything on the web about CRPS. Years later I was grateful to find this site. I am often asked by professionals if I have a support group, and well, I always reference this site. I always find solace here.

Two months ago my now husband and I eloped to return to a big reception. The night before the reception I broke my left foot in two places. I continued to walk, dance and wear heels the rest of the weekend (you only do it once, right??) before discovering just how injured I actually was. Just one short week after being put in a non-weight bearing boot my pain began to show RSD symptoms such as an increase in pain, my foot turned blue to the point of it looking dead, and the constant feeling of pins and needles. My original doctor simply put me on medical leave from my teaching job and told me to keep it elevated that it was simply from the break. My instincts proved true that something just wasn't right and I was blessed enough to have an amazing second opinion dr. that diagnosed it RSD immediately. He quickly referred me to the best anesthesiologist in the Charlotte region and I had an appt. with that dr. a week later. He said I'm lucky in that we caught it earlier than most so that I have a real chance at beating it. I'm going to beat it. I'm taking Lyrica 3x/daily as well as Nucenta. They are already helping me to walk--something I haven't done in over 5 weeks and what I thought was impossible with the electric shocks of pain in my feet and legs when I tried...that was a big achievement in and of itself. Today I had the first of 6-8 weekly sympathetic nerve block injections. I'm feeling hopeful. I have too much to look forward to with my amazing new husband and my own career and personal goals to let this stop me..maybe just slow me down a little bit to remind me of my strength.

Hello to u all I hope ur all havin better days..I have not been on here for awhile cuz Ive been laid up in bed only gettin up when I hav to. I hav been in tears tryin not to scream from pain & tonite is no better I really dont know how much more I can take of this..Anyone that has any advic er plzxx lay it on me cant take many more days/nites like this