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While this topic has been covered several times in the past couple of yerars, there has not been a lot of dialog and posts regarding this subject.

On our Facebook feature, questions regarding RSD/CRPS came out wanting to see it discuss on our forums.

Oor standard approach into introducing new forum categories, is to first introduce the subject matter in an appropriate forum container. Then based on the amount of activity, some of those new threads become their own forum category.

That may never happen, but the ability to post to this thread exists, plus the ability to open new threads.

We encourage anyone suffering from or know someone suffering from RSD/CRPS post here
Ron DiLauro Spine-Health System Administrator
I am not a medical professional. I comment on personal experiences
You can email me at: rdilauro@veritashealth.com


  • I made a rather lengthy post on RSD/CRPS tonight on another discussion on RSD. It would probably fit better in this discussion. Can the post be moved by moderator?
  • I had previously made a couple of posts under recovery from surgery, but am now dealing with new diagnosis. I am 66 yo female five months PO from five level lumbar fusion with titanium implants dive levels and into pelvic area.. I had typical nerve pain first four weeks which has steadily improved. Back and side incision healing. I put this surgery off for years, partly because I also have lupus in remission, but finally had to have something done. Back is doing well and original back and leg pain is gone; however now I am suffering from the worst pain I have ever experienced in my big toe and the tendon above as well as some pain in my ankle (all left side) foot has slight swelling and has distinctly different coloring from right foot. I have already lost a lot of mobility in the foot. I am scheduled to start PT in two weeks, hopefully sooner. Trying to walk and move as much as possible but anything touching that toe in the least is very painful. I am awakened during the night out of sound sleep with searing pain. I've had Doppler for possible blood clot because oh history of bilateral dvt 12 years ago- negative, as well as CT. Scheduled for MRI and return PO visit in two days. It seems almost every posts I've read about RSD concern people a lot younger than I. I don't know if my age will have an impact on the treatment or symptoms of RSD. I am curious if anyone knows. I have a strong faith, but this has been devastating news. I would appreciate any comments.
  • RSD/CRPS is a uniquely painful condition that has specific diagnostic criteria . Has anyone diagnosed you with RSD/CRPS?
    Have they ruled in or out, neuropathic pain from the surgery as the cause?
    Have you tried, medications such as Lyrica, topamax, gabapentin, cymbalta to treat the pain? Are they effective?

    CRPS/RSD is a disorder of the sympathetic nervous system and is difficult to treat, however age has little to do with it.....the most successful outcomes are the ones who are treated early and aggressively .....movement of the effected limb is essential......
  • Sandi, thanks for your input. I wound up back in the hospital to remove a large seroma at the L5S1 level. This was seen on MRI 4 weeks postop. Dr. Said he removed seroma and cleaned out area as well as the level above. He stated " there was no way that nerve can touch anything now". I was discharged six days later, with same pain I went in for, sharp, electric type shocks in great toe left foot, as well as my second toe has dropped causing me to trip. I went to my pain doctor who did a nerve block at the head of the peroneal nerve on the outside of my left knee. Other than short term relief from the numbing, my toe is the same. I am scheduled for another injection this coming Tuesday, one week from previous. I am Aldo going to Physical therapy three times a week, wearing a tens unit, taking 600 mg of gabapentin TID as well as cymbal ta, 60 mg bid. I am still in pain meds and muscle relaxers, more for my back than anything else. Pain dr. Seems to thinks this could in part be due to the positioning of my legs on the operating table for seven and a half hours and then pressure from the leg cuffs. I am trying so hard to stay positive, but it's the most difficult thing I've ever had to deal with. My surgeon is concerned with my back, which, after two surgeries, is doing well, I believe. A lot of spasms, but seems to be healing. Pain dr is holding off on diagnosing RSD just yet but is certainly leaning in that direction. Am I missing anything here. I have read a lot about how the human growth hormone to stimulate bone growth used in the cages on all levels can often cause this. I guess I want to be mad at something or someone! Works better than crying. I am getting better about that.
    I appreciate any input you might have.

  • It is hard to differentiate between the normal post op pain, and neuropathic pain at this point.......for me, I felt burning unlike anything that I have ever experienced, followed by my shoulder, and as it spread, down my upper arm, then lower arm, wrist, hand and fingers, they would be bright red , as if I had gone out and burned in the sun for days, a deep red is the only way to describe it, then just as quickly, everything would turn blue and cold.......clothing felt more like really gritty sand paper that would irritate my skin......and send me screaming due to the pain....things that normally shouldn't cause pain, did.......immense pain.
    Eventually I developed contractures and atrophy.
    What you are experiencing may be related to the nerves being impinged or compressed during the surgery......the thing that I will strongly suggest is that if you are experiencing pain from things , like the breeze blowing across your skin , normally un noxious things that are causing you severe pain, then it is time to find someone in a large city who is familiar with the treatment for RSD....
  • Sandi, thank you for your response. I'm so sorry to hear of the pain you you are experiencing . I also appreciate the advice regarding finding a new specialist, although I'm not real sure how to go about doing that. But I have to do something proactive; I think that will help me feel less helpless,, if that makes any sense. The strangest thing is that I feel no connection
    between my back and my toe, back just feels achy and sore and I can tell it's getting better every day. Pain in my toe which is constant, seems totally unrelated in my mind. And the sharp stabbing, shocking sensation that I get in toe just comes on with no provocation. I'm very concerned about leaving the house, because when the pain hits I can't help but cry out. I'm going stir crazy here I'm sure you understand that. Have you found any sense of normalcy in your life at all? I think besides fear of RSD, feeling as though I can't be in public places is a very big issue for me. I think I'm rambling, so I will stop now frustration setting this morning and it's Mother's Day I would so love to just be able to enjoy my children visit, again, thank you for your comments
  • I am now 7 months postop, and have a definitive diagnosis of CRPS.
    after three ESI's and 2 sympathetic blocks, I just completed a trial of the neurostimulator, and am really struggling as to what to do next. I honestly can say I did not receive significant pain relief while in the trial period (3 weeks). I am not wearing a brace for dropfoot, the pain has progressed into my ankle and up my calf. The dr's staff are really encouraging me to have the permanent stim implant but I have pretty much decided against it. It was ore a distraction than a pain relief. Plus, the riskks are just more than I'm willing to take because of lupus and long term prednisone use (16 years) and risk of infection. Plus not being able to have further MRI's. I have yet to meet anyone who did not have the permanent implant; I' wondering what happens next. I haven't driven in 7 months due to the pain, and pain meds. The brace keeps me from falling, but when I take it off, the pain is searing. My back hurts terribly from muscle strain from the change in my walk. Sleep is almost non-existant. Once I lie down and try to relax, the sharp pain in toe, ankle and leg keeps me awake. I'm feeling "handicapped" and "disabled" and beginning to get really angry at the surgeon, whose last comment to me as I walked out after an appt., was "you sure walk funny", thinking he was being funny. I was not amused, to say the least. I've been seen by two pain specialists who confirmed the CRPS dx as well as my rheumatologist. I guess I just need some encouragement. What's next?
  • specialized in treating RSD, picked one, who I worked with for seven years......I did the ganglion nerve blocks, a gamut of medications, and more nerve blocks, and the best thing that I did was force myself through excrutiating physical therapy. And I do mean it was excrutiating.....but it was the only thing that allowed me to regain my arm, hand and fingers, as well as most of my shoulder function back.
    As much as it hurts, as painful as it is, the worst thing that you can do with RSD is to avoid contact with other objects, or not use the effected parts.......it only intensifies the sensitazation of the limb.
    I know how difficult and disheartening it is to live with this condition, and how no one can really understand the symptoms and how the littlest thing that shouldn't hurt, causes immense pain, that is beyond description to most of us, but physical therapy is the most important part of dealing with the syndrome.....and continuing it for as long as it takes. The more you use it now, and persue treatment with someone who knows what they are doing when treating it, the better the chances for remission of the symptoms and regaining the use of the limb involved.
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