Anyone out there with RSD/CRPS?
Interested in more discussions like this? Go to the Brain & Nervous System group.
I know quite a bit about it, what’s going on?
I have a Tbi that is similar to an RSD I think
I do it has taken over my life
I am more recently diagnosed, and the disease is spreading to my other arm and other parts of my body. Does anyone know if Mayo Clinic has a clinic dedicated to CRPs anywhere in the US?
I just got diagnosed today with CRPS II. I also have idiopathic SFN and ALS-4. All three combined are incredibly challenging and painful…character building and humbling, for sure!
Anyone here experienced amputation due to CRPS (RSD)? I've been pleading for 2 years now someone rip my arm off… I've heard there is increased quality of life afterward and minor to no residual/phantom pain…any truth to this? How does one live with daily without losing sanity? Help!
Jump to this post
@rivermaya34, So sorry to hear about the new diagnosis and the pain you are having. I know it has to be really difficult when you start thinking about amputation. I have read about phantom pain in missing limbs in stories from combat veterans. I'm wondering if you might find a discussion started by @rwinney helpful. She may also have some suggestions for you.
Mayo Pain Rehabilitation Program: What's your experience?: https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
@rivermaya34 Hey Karen, I'm Rachel, it's nice to meet you.
Thank you @johnbishop for bringing me in to the conversation. Karen, you ask a great question…how does one live daily without losing sanity? I've asked myself that question many days.
I took a quick peek at your bio and some of your posts. Wow, girl! You impress me. I admire your positivity and strength. Setting your titled diagnoses aside, how have you currently been managing your circumstances? What does your daily routine look like?
Thanks @johnbishop for the suggestion/connection, and the encouragement too… I once worked at a prosthetic company for several years and saw quite a lot there. My best friend is an amputee and I am very well aware of his daily struggles, and so I didn't make that statement from yesterday lightly. I just feel like here lately I'm 'losing it' and that's exactly the opposite of what I desire to happen. I've been doing pretty well to counter it for a long while now, but man there've been just so many incredibly overly challenging days here lately in regards to pain, and unfortunately I can't separate myself from my own body as I'd like to often times…what's the old saying, 'whatever doesn't kill ya only makes ya stronger?' … lol aye yaye aye smh. I'll check that discussion board out!
Hey @rwinney, so glad to meet you! I've been thru hell'n'back 10x over by this point in my life, so honestly these are just newly colored flames of the fire. 9/10 days I do pretty ok with keeping my head up and smiling. Encouragement is one of my gifts, and being an empathetic peacemaker at heart, I truly enjoy nothing more than uplifting others. That being said, I am only human and do suffer a number of 'bad days' that I wrestle with quietly. Over the course of many years, I've slowly drawn back on certain activities and recently at work, allowing few to step in and help as needed. I stay pretty busy, though – working full time, full time college student (I'm in my 4th year of BBS, pursuing MBA after), hunting on the weekends, I teach 5th grade Sunday school and coach 1st/2nd grade basketball, learning new languages on the side and pursuing multiple other closet hobbies in my 'spare' time. I try to go for a walk or run if I feel up to it, and I eagerly desire to return to the ice. My daily routine depends on the day, honestly…usually working 6-4 then come home and get plugged into school or whatever else. I don't sleep well most nights, so pretty steadily exhausted all the time. But, I'm grateful to wake up each day with new mercies on my side and adventures that await! 🙂
I called the Mayo Clinic in Fl. Told them I have CRPS. They were able to direct me to the University of North Carolina to The anesthesiologist/pain management department. Check your teaching universities.
I strongly encourage you to find an anesthesiologist/pain management doctor rather than fooling around with just a “pain management physician”. I went to a pain management physician and he didn’t even spend five minutes with me before announcing he was giving me a Botox injection. He just herd the patients in and out. No questions asked. I left without the injection. I wanted to know what it would do to me. Do your homework. Botox weakens the muscle.
I have used a Sprint implant for 60 days and it helped immensely. It’s not a permanent “fix”. It was used to see if they could get the communication going in the nerves plus I got some relief. This company is out of Beachwood Ohio. Call them. I am currently waiting to get a Boston scientific implant into my spine.
Remember one of the best things you can do for CRPS is to make sure you get a good nights sleep. The other thing that I am being told is keep it moving. I’m working on it. Use a pool of you are able. Lose weight, too.
@rivermaya34 Whoaaaaaa girl, I am EXHAUSTED reading about your daily routine and activities. 😰🤪 You most definitely are a motivated person (as you should be at your age) and one might think you are a bit of a perfectionist, over achiever, and go-getter. Am I right??? It takes one to know one, and I relate big time! 😉
Your recent post speaks of arm amputation. I'm so sorry that you experience such pain and frustration. I also experience chronic pain and went through hell and back. After years of confusion and my conditions building, I became unable to work and declared permanently disabled. I struggled with this especially being a person similar to yourself that had been an over achiever, perfectionist, and go getter. My stuff really hit hard around age 41 and gained steam through my 40's, so I was not as young as you, but still pretty young.
Chronic conditions and diagnoses suck, and I know first hand that it takes more than just temporary relief and band-aides, it takes strength, courage and tenacity, which I feel you possess. I whole heartedly believe you are a perfect student for the Mayo Clinic Pain Rehabilitation Center (PRC). It is 100% built for you and your conditions line up with the teachings. This program saved me. No, it did not cure me (that'll never happen), it did not remove all of my chronic pain and symptoms completely, but it sure as hell gave me a foundation to live the rest of my life in chronic pain and know how best to manage it both physically and mentally, and reduce my symptoms.
Here's a video from Mayo Clinic's Dr. Sletten who heads up and teaches the rehab program. He and his team are amazing at what they do. They changed my perspective and provided me the tools to get a handle on living this way, and to achieve a better quality of life. I was in class with people ages 18 to 71 which I think attests to the fact that PRC is where it's at!
My heart tells me that you would succeed in a more healthy manor if you learned how to put yourself and your needs first and manage properly. I want that for you. Do you mind letting me know your thoughts after watching the video?
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In