CRPS - anyone suffering with complex regional pain syndrome

Thank you Gail - my daughter goes twice a week for PT and sounds just like what she has done to her - it helps but the CRPS keeps hitting her body so relief is temporary. I'll ask her if it referred to as ART. she now has Esophageal Spasms leading into stomach and now taking special blood pressure meds which can help slow or stop the spasms....it appears the CRPS is attacking many parts of her body... but she is a fighter... praying somewhere out there is a pill to slow or reverse this ugly disease.

I don't claim to know anything about CRPS, but i had chronic pain in my right lower back, hip, leg, knee and ankle for 1.5 years. In December, 2016, I had a laminectomy surgery on my L5-S1 to fix a problem that affected my left lumbar area with acute pain. The surgery stopped the left side pain. I went through PT and pain meds for my right side pain, and nothing helped. I finally decided to try Active Release Therapy (ART) that I read about on Mayo Connect and others said had helped their pain. I had 8 sessions (2 per week) and each week my pain was less. I am almost completely pain free now, and it's been a month since my last session. I go for a touchup on Monday. This is the best thing I have ever done for my pain. ART involves deep pressure on various muscles while the practitioner moves my limbs in different directions. I use a local chiropractor, Todd Andrews, who is also certified as an ART and sports medicine practitioner. He also uses laser therapy to warm and relax the muscles. The theory behind this therapy is that your muscles get bound together with your nerves, and they have to be released in order for the pain to dissapate. I am amazed that after 1.5 years of constant excruciating pain, I am now only having a little pain at night when I sleep. I can handle that! I recommend that you check out this therapy for your daughter. Best of luck, Gail B.

Hello I’m Cindy’s and I was recently diagnosed with CRPS after an accident I had at work in 2019 to my left foot and the pain is absolutely intolerable. I’m seeing a pain management doctor which has me on gabapentin she also just prescribed terazosin and a cream to apply when I’m able to touch my foot. I had a nerve block done in January 2020 and I had a severe reaction to the steroid and ended up in the hospital so needless to say the nerve block didn’t work. My employer, friends and family do not understand the unbearable pain I’m constantly in. I was wondering if anyone has any advise or suggestions on how to deal with the pain or anything that has worked for them. I have an appointment to go to the Cleveland Clinic on Monday for more treatment. All suggestions and advice is very much appreciated. Thanks

Hello I’m Cindy’s and I was recently diagnosed with CRPS after an accident I had at work in 2019 to my left foot and the pain is absolutely intolerable. I’m seeing a pain management doctor which has me on gabapentin she also just prescribed terazosin and a cream to apply when I’m able to touch my foot. I had a nerve block done in January 2020 and I had a severe reaction to the steroid and ended up in the hospital so needless to say the nerve block didn’t work. My employer, friends and family do not understand the unbearable pain I’m constantly in. I was wondering if anyone has any advise or suggestions on how to deal with the pain or anything that has worked for them. I have an appointment to go to the Cleveland Clinic on Monday for more treatment. All suggestions and advice is very much appreciated. Thanks

Welcome to Connect, @k135, @cindy78 and @sassycat. While we wait for others to join in and share their insights, I’d like to offer this information for Mayo Clinic, about CRPS.
Complex regional pain syndrome (CRPS) appears to be an autoimmune condition, in which the body responds in an unusual way to a perceived threat. As the immune system fights to defend the body, inflammation occurs. https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/symptoms-causes/syc-20371151

I’m certain fellow members, @mlross4508 @gracie2018 @suerc @healingone @scruffy1 @barbbie @jeffyoung @dmac5 and others will return to share their insights with you. You might also be interested in viewing these Connect discussions:
– CRPS and Nevro SCS https://connect.mayoclinic.org/discussion/crps-and-nevro-scs/
– Anyone used Spinal Cord Stimulation for pudendal nerve entrapment? https://connect.mayoclinic.org/discussion/anyone-experienced-in-using-scs-for-chronic-painb/

I thought I’d provide more details about the treatment that @k135 has mentioned–Neridronate: https://journals.sagepub.com/doi/full/10.1177/1179559X17732971

Neridronate is approved in Italy for CRPS but the FDA has not approved this drug or its equivalents in the USA. Although patients with CRPS Type 1 have found success and gone into remission, there is no research that shows anything from a new injury, serious illness/disease, extreme stress, or simply stubbing your toe wouldn’t cause a return of the CRPS either in the same place or possibly in a new area.
"Major trial of CRPS ‘potential cure’ drug Neridronate halted” https://www.grunenthal.com/en/press-room/view-media-statement?pressReleaseId=01a51358-e3c6-493f-9353-377a34884dd7

I also have CRPS that I've had in my right foot for about 6 years now. I have an Abbott DRG implant, along with a NALU stimulator in my leg. Sometimes, nothing seems to work. My doctor recently scheduled me for a Lumbar sympathetic block to see if that might give me relief. I think we are trying to keep from going to a stronger med than the gabapentin and tramadol that I am currently taking (and I think I've developed a tolerance for it). Anyway, I was wondering if the steroid you are referring to is the same as the sympathetic block I am to get? I am hopeful the same thing does not happen to me. BTW, I am enrolled in the 3 weeks Mayo Comprehensive Pain Rehabilitation Center soon......and hoping it works!