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

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!

Hello All, I was just diagnosed with CRPS after my last surgical procedure on July 27, 2017. It's in my left foot, for the first 10 weeks I was in bed taking pain pills every 2 hours 24/7. It wasn't for the nerve pain it was to glogg my mind so I didn't have to focus on the nerve pain that was intolerable. The nerve pain was so severe I was on suicide watch by my family. Once the doctor saw me he diagnosed me right away with CRPS, he schedule a diagnostic injection a week later and I had some relief for about 2 weeks. Since then I have had 2 injections with Botox which last for about 2 1/2 months with some relief but gives me some hope. He started me on Terazosin which is a medication to lower my blood pressure. I haven't been on it very long so i will try to keep you updated on my progress. Most recently I have been having similar nerve issues now in my right foot but not as severe but it's the beginning. I have to say what has worked the best is my faith and praying 24/7 to take the pain away. I did go to pool therapy at first it was very difficult all I did was cry but I stayed with it. Each pool session got better then I started to have land therapy which started out rough then it got better. Both therapist had gone through CRPS courses which makes it much easier because they understand what we go through. Another thing to watch out for is being pricked by needles, every time I am pricked with a signal needle my symptom will worsen for about 5-7 days. I am now seeing a Christian Pain Psychiatrist that is going to start with a program called EMDR for CRPS & Chronic Pain. I will try to keep you updated on my progress. At this point of our life we have to try anything because there is NO cure for this disease. One other thing I want to share with all of you. I have a brother that is a Nero Chiropractor that practices in Sweden for over 30 years now. I begged him to fly home which I offered to pay for his trip. After thinking about my condition and changing his work schedule he came home for 8 days to work his magic on me. At first he could not touch my left foot nor work on it so he started from my head and worked his way done day after day. By the time he left he was able to touch my foot with little resistance from me. This was a miracle that he was able to touch my foot, prior to this a fly could not land on my foot if so it was very painful. After he left to go back home he did some research to find a Nero Chiropractor near where I live. This wasn't easy because there are very few Nero Chiropractors in the USA. If you can locate one I highly recommend to go see them. The one he found for me was just starting to take course from a doctor in Canada. When and if I get up to it I plan on flying to Sweden to have my brother work on me for about 2-3 months. I cant imagine what he can do for me after 2-3 months after seeing what he did after 8 days. Again I will try yo keep you posted when this time comes, it may be he'll come back home before I can fly.
Everyone that has this disease, I will add everyone of you to my daily prayers.
Good Luck - Steve

Hi, I see this is an old post. But my daughter's father was just diagnosed with CRSP in Denmark and I am from Sweden. Is there any chance you can share your brother's contacts? All the best and hope you have success in recovering and treating the symptoms 🙏

@schesse
Hello Steve. I Wonder if you can contact me? I would like to know more abort your brother ( his name and where I can find him?) that is a Nero Chiropractor that practices here in Sweden. I live in Sweden and have crps. Thanks/Linda in Sweden.