RSD/CRPS

@dcanada54 I saw Dr Sainburg and Dr chidgey. They put in my spinal cord implant. After that was put in I ended up seeing Dr Russel Davenport in Charlotte who is the anesthesiologist that specializes in PAIN MANAGEMENT. I cannot say enough good about this man! He is incredible. I want to encourage anybody with CRPS to find an anesthesiologist that specializes in pain management. (stay away from PAIN MANAGEMENT doctors that herd you in like your cattle. They just don’t listen and all they’re doing is getting a paycheck .) What Dr. Davenport has done with me is just this side of a miracle. I also want to encourage folks to watch their diet. First off, get off of all sugar. And I mean, all sugars. It causes inflammation. You will have a withdrawal headache that lasts several weeks. I ate a small piece if candy daily and gradually got off of it. I want to encourage you to also get off of red Meats. Eat fruit and vegetables, fish and white meats. Stay away from caffeine. Eat nothing processed. There is a group up in the New England area that gathers together for CRPS meetings. I got their blog. Look them up. I found out about them on the Mayo website. Keep moving! I know it hurts like the devil and there’s nothing we can do about it other than fight it with exercise. Swimming helps. I go to PT. Drink lots of water. I have a Boston Scientific Implant and it has its pros and cons. The part I like about it is that I can get an MRI. The down part about it is the staff is not well trained. It is very irritating to get lip service instead of the correct answers. When I went to UNC, that Representative hooked my legs up backwards. It took six months to get this resolved, and I ended up finding someone in the winston-Salem area of NC who figured out what was happening. My original rep is still with them in the UNC. Sad. That was extremely aggravating. Do your homework if you’re getting an implant talk to your anesthesiologist who specializes in pain management for guidance. We are all different but this is the route I went. As you know, knowledge is very limited about CRPS in the medical field.

@cmp4001 What an awful story. I am so sorry.
I am having to get my SCS battery replaced as it is 6 years old and not holding a charge.
My original contact was with my Boston Scientific, the brand of the stimulator. He made an appointment for me with the surgeon who they use for replacements such as my situation. Have you contacted the representative from the brand of stimulator you have. There are designated procedures in place for these issues? It worked for me.
Regarding RSD/Crps, I had my first case after a minor car crash that did enough damage to my THUMB that required surgery. From that I developed RSD! VERY PAINFUL. Desensitization therapy over many weeks did resolve the pain.
I am currently experiencing another CRPS event in my hand after a broken wrist. And so we will see what the doc recommends now. Again, I am so sorry.

@mel143 I have experienced RSD/CRPS twice now-maybe three times. (Being evaluated currently). Both/all three were a result of trauma. Broken thumb, broken wrist (just call me accident prone) and TKR. DOCTORS have told me that once you develop RSD you are likely to experience another😟. However, the first incidence was resolved by PT using desensitization treatments. This was introducing different objects to the hand. That INCLUDED DRIED CORN IN A TUMBLING MACHINE, FEATHERS, TOUCH, MASSAGE and other material I cannot remember. Sounds ridiculous doesn’t it. But after twice a week for 4 weeks my hand accepted stimulus without pain or discomfort in any way!
Back to normal— only to return to opposite hand after 10 years (from the broken wrist. I am scheduled to have the battery replaced in my Spinal Cord Stimulator next Tuesday, Sept. 1. The stimulator is in place due to pain of back issues. The hope is that the impulses from the SCS can be directed to my hand also. I am a true believer in SCS as it has controlled my pack pain successfully.
I have just had two in a series of three nerve blocks in hopes that is a solution.
You know, as I write this I realize just how much of my adult life has been spent trying to resolve pain issues. I am 84 years old-hoping my last years will be pain free.
Don’t stop trying to find a solution for your pain- - I have not. 😊

@harrie123: I'm so sorry to hear you and others are suffering from this somewhat rare but unfortunately very painful condition. Complex Regional Pain Syndrome (CRPS) - formerly referred to as Reflex Sympathetic Dystropy (RDS) - is generally divided into two categories. Type I is caused by injury, illness or surgery; Type II is associated when a specific nerve injury has been identified. Both present with similar symptoms including buring pain, sensitivity to touch, mottled skin, temperature or skin color/nail growth changes in the region. Both can present challenges in treatment. As either can take some time after the triggering event has occurred, it does usually fall to specialists such as pain management providers who rely on a multidisciplinary team that may include physiatrists - Physical Medicine and Rehab (PM&R) providers who focus on restoring physical function and pain relief - anesthesiologists who can provide interventional pain treatments, physical therapists, and behavioral health therapists. An implantable spinal cord stimulator (SCS) may be one approach to treat this syndrome although others may respond to less invasive measures.

Many people don't understand the complexity of this condition so explaining it to others can be met with confusion, sometimes even doubt that this is a valid medical problem which can contribute to the frustration of a person facing the multiple issues associated with it. This is an excellent guide to CRPS and may assist with not only understanding it yourself but in explaining it to others: https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/symptoms-causes/syc-20371151

I myself will be having a surgical procedure later in the week but if you can, please let me know how you respond to the to the battery replacement on Tuesday as I'm anxious to hear your results.

This is an update regarding my CRPS. Just prior to Christmas, I entered remission from Complex Regional Pain Syndrome (CRPS) and discovered that I had developed severe tendinitis in both legs. I engaged a highly skilled physical therapist who employed ASTYM therapy on my legs, successfully managing the condition. Unfortunately, in July, due to a highly stressful situation, the CRPS symptoms reemerged. I subsequently underwent bilateral sympathetic nerve blocks. Additionally, I had my Boston Scientific implant removed because the battery became exceedingly painful, particularly as it was nearing depletion and required recharging. The device was implanted four years ago. I am grateful for having received the implant; however, I am equally relieved that it has now been removed. While Boston Scientific provides a reputable product, their training resources appear to be inadequate. I was disappointed by the unprofessional behavior of their representative in Chapel Hill. I strongly recommend that anyone considering an implant consult an anesthesiologist with specialized training in pain management. I continue to monitor my diet, exercise regularly, and maintain proper hydration. My objective remains to overcome this condition once again. Fortunately, it has not recurred as severely as before.