CRPS - anyone suffering with complex regional pain syndrome

I am new to CRPS have it in foot from twisting ankle

Anyone have full body RSD. I know there are not that many with full body and that there are no Doctors that understand what that means.
I’m looking at a stem cell therapy. Like to do it a Mayo but can’t contact anyone. So I guess it’s going to be Vanderbilt.

HI @drp985 you may have noticed I moved your post to this existing discussion on CRPS or RSD so that you can see what others have said on this syndrome. Simply click VIEW & REPLY in your email notification to get to your post.

That must be awful to have this affect your whole body.

I thought @mlross4508 @dmac5 and @lorirenee1 have all mentioned CRPS in the past and may be able to offer you support.

Here is a link to the contact information for Mayo: http://mayocl.in/1mtmR63

Back to you @drp985 how have you been treated so far?

Hi, @drp985 - yes, it is definitely good to see a doctor who truly understands what you are facing. Hope you may be able to contact one of the Mayo Clinic campuses about an appointment at the link ethanmcconkey provided.

How is this pain you are having impacting your daily life?

I have CRPS since 2015. Started in my knee and spread to both legs and feet. I was in a wheelchair, couldn’t deal with noise, vibrations, crowds, weather changes, etc. Nerve blocks, physio and meds weren’t helping. I read in a blog like this about a treatment in Italy and decided to try it even though the results were better for people who had crps less than 6 months. Best decision ever!!! I went in a wheelchair and left Italy being able to walk. It’s been 2 years now, and I’m back at my full time demanding job and some days forget that I have crps at all. It’s still there, but so manageable now- mostly just burning at night which is quickly solved with cbd oil and a good night’s sleep. I hope this helps somebody out there. The treatment was neridronate - I think it may be available in the US as well now.

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

Hi I'm new to this forum and was diagnosed with crps after a fall in 2018. It started in my left foot and is going up my leg and I'm starting to have symptoms in my right foot. I live in a very small town where doctors just don't know what to do with me. As soon as I was diagnosed with crps my physical therapist said there was nothing else they could do for me and told me to stay home and keep my foot up. I have no insurance and I feel stuck. I didn't know if there was anywhere I could go for help. The doctor I am seeing now is a low cost doctor that gives me pain meds but she never heard of crps before me and knows nothing about it. She even told me it couldn't spread which I know is not the case after researching crps after being diagnosed. Currently I am in bed 90% of the day to keep my foot elevated. If my foot goes down it turns a dark purple and is excruciating pain. If my foot is elevated the pain is bearable. But I see pictures of people in wheelchairs with their feet down. So I was wondering am I alone that I have to keep my feet elevated or does everyone just deal with the pain? Thank you

I always had the same problem with needing to elevate. I don’t have to do it much anymore, mostly at night and if medical marijuana- especially cbd which won’t get you high is an option I would try it. Everyone is different, but I can take it and literally watch my leg turn from purple to normal within a matter of minutes. If you can find ways to get improvements (for me the turning point was neridronate infusions) you can start internalizing the message to your brain that it’s improving. I also found massaging it myself helped to reduce the sensitivity and try to think positive and even say it out loud even if it’s just to yourself- I know it sounds crazy, but it’s our brain controlling it and they say that helps to believe it more. I know how hard it is to push past the pain, but there’s hope! I’m 98% better and my doctor was no help either- honestly learned more from these blogs

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

Thank you 🙂