Reflex Sympathetic Dystrophy Support Group

First of all my doctor says i have sympathetic neuropathy and I went and got an IME and that doctor said I have CRPS-SMP...I have searched and looked at every available web page to find out what the difference is and I cannot find a difference. I think maybe my doctor just does not want to say CRPS and gave me a 2nd bone scan so he could say "you are fine"....I am not fine. I am going to therapy now for the first time in 10 mths since this injury and they are very informative. I may not look like someone who has stage 4 , but I do have sweaty palm...so sweaty sometimes it looks like there is a puddle in my hand. I have cold hand, discolored compared to other hand,burning,sweaty,tightness, sudden stabbing pains and to look at my hand it does not have any horrible disformation and I don't think anyone cares or believes me. Now they are finally going to send me to a pain clinic cause I told them that is what I want and the other doctor recommended it and I don't really know what to expect. I have had so many tests and no treatment until now....maybe they can help me, but I am not excited about anyone sticking a needle in my neck at all..I have had 3 kids and 3 epidurals and none of them worked, so I am thinking I am not a good candidate for this....WHAT ELSE DO THEY HAVE THAT WOULD WORK???? Any suggestions would be sooo appreciated...Thanks!

Welcome to our Group.

Once you get to Pain Management your options are generally the pain blocks and medication management, often, but not always followed by intense physical therapy.

I hope you are not offended by this but I've never known anyone who ended up in stage 4 in 10 months. Stage 4, which some doctors believe doesn't even exist would be the worse stage possible. Vital organs would be affected. Not as you described. Organs can be affected in end stage 3. At best from what you described you might be in stage 2, but more likely in stage 1 since it's only been 10 months from the onset of your injury.

I do not doubt your pain at all.

I do hope you get great care at pain management. Please keep in mind they aren't there to cure you, only help you manage your pain.

Wishing you the very best,

~Twinkle

April '11: I was taken by ambulance because of my in ability to breathe. The RSD is evidently creating problems with my breathing as has been diagnosed this past week from a lung specialist who did a "broncoscope" a few weeks ago. So I am in the ER in an open area. The nurse comes to me and I just make a statement, "I feel like I am going to die." Then she looked at me, "Well go ahead and die."

If I had been back in my 20's and in the frame of mind I was in, I would have probably gone bezerk! Pain can make you do the most unthinkable things. It can make you believe the most unbelievable things.

You feel like you are in the last stage. I understand what you are saying. You have hit the "pain wall" HARD and you are out of control with pain.

But there are things out here that can help us. Being experienced with pain is the hopeful beginning of understanding of how to control it. Twinkle just above me knows her stuff. Read her posts. She will teach you how to deal with your pain and how to live as close to a normal life as you can.

What I have learned here is "Pain is not the end of the world." Believe me when I say this, these people here know pain and they can help you.

My post is to be helpful, and believe me, I am on your side. There are many here who feel the same way.

Welcome

DP

I am fairly new to this site, I have RSD/CRPS, I am stage 3 (please correct me if I am wrong) mainly because of how long I have had this and new symptoms that I have. No one has all the answers, but please ask your questions. The people on this site listen. They have been great listeners and have given good advice. Do the Pain Management, because they have good things that help and some that don't, take the good and let it help you.

I had the same symptoms 4-6 months after I broke my ankle..the sweating, Hot burning pain..to the touch you are ice cold. Then I broke my hand on the same side of my bad foot. Those symptoms took 9 months to come...wow and I was so mad..when my rheumy doc told me the RSD was in my hand and spread up my leg..and now my whole arm aches at times. But never didanyone say I was past stage 2 ..but my rheumy doesn't go by stages..my pain doc didn't either. Now I am a little concerned, because when my foot is not swollen..it actually looks flat..like the arch gave out and my toes went flat..my rt foot actually could be a whole size smaller..I wonder whats next, because I have to forget the pain and work. But I did find a low income, no ins clinic that has saved me so much money..Now if my healthy husband can only find a job..I would be accepted for SSDI..He was laid off almost one year ago, but helps around the house.

It feels so strange since my fingers curled into my palm of my hand and typing with my pointy finger..hate RSD..Just my thought on the progression of this disease...Pain management was the best for me..but they are too expensive for me now..so I get no relief..but from Gabapentin..but I dont feel it is doing much now..I have to take the antispasmatic meds if I dont want to look like I have seizures..

Best of luck and good wishes to you..

Caring much...I know this is one disease I wish I never was diagnosed with..its so hard..but you can make it through it all in all...just have faith and keep moving..dont lose the movements..or it will all stiffen up on you..and then the limb doesn't rely to anything at all..

Best wishes

Patty

Regardless I think seeing a pain doctor who deals a lot with these conditions is important.

and all of you who send responses....I think I should have worded my post better....

I meant...I don't look like someone who is at stage 4...NOT that I am at stage 4 and that I don't want to get to that point. Sorry for the confusion. I have no idea what stage I am at. I did however have some more MRI tests and they now think that the stellate block will do me good. They found some nerve roots that are impinged in neck....So we will see ....

If the block works does that mean you don't have CRPS??

Thanks for all the helpful idea from everyone!!!

Sorry for any mis understandings. Most of those who even have stage 4 don't look like it to the outside world. People have no idea.

From what I understand is that if the sympathetic nervous system cannot be blocked then it's likely the patient does not have CRPS. Blocks are used for 2 reasons, one to relieve the pain and 2 as a diagnostic test to see if the SNS can be blocked.

Hope this helps,

Best wishes always,

~Twinkle