RSD/CRPS

Posted by Anonymous @anon37227499, Nov 6, 2011

Does anyone have RSD/CRPS? Do you know if there's a current research study for this at the Mayo Clinic?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

@rivermaya34

I am in awe and almost in tears at such a valuable and wonderful testimony of magnificent, positive change! Thank you for sharing this with me…I feel I have found hope. I live closest to FL – what does it take to get into this program? Working on your other post now…

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@rivermaya34 I'm happy to hear you feel hopeful. That is so important.

You first can apply through the attached link or by calling the Mayo you choose to attend.
https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation-mayo-clinic/sections/request-appointment/ptc-20467166
You are able to self-refer however a doctor referral is best. Generally your PCP is the best source as they have a complete health history, and can send all records to Mayo on your behalf. After records are received, Mayo's Doctors will interview you and make sure you qualify. I did this virtually as I live in NY and attended Jacksonville's PRC.

Mayo PRC is a well sought after program so there is a waiting list which can be lengthy, especially during Covid due to # restrictions. I suggest you get the ball rolling as soon as you are on board and are thoroughly aware of the program commitments. Also, insurance approval is important. It is costly without insurance.

What about the rehab program interests you most?

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@grannyzoo

I wish you the best!

I can’t get my password to reset so I can’t give you more info. I go to the chapel hill location.

Sent from my iPhone

On Jan 7, 2022, at 12:22 PM, Mayo Clinic Connect wrote:



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Aww no! Hopefully it'll get fixed soon… thank you so much!!

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@rwinney

@rivermaya34 I'm happy to hear you feel hopeful. That is so important.

You first can apply through the attached link or by calling the Mayo you choose to attend.
https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation-mayo-clinic/sections/request-appointment/ptc-20467166
You are able to self-refer however a doctor referral is best. Generally your PCP is the best source as they have a complete health history, and can send all records to Mayo on your behalf. After records are received, Mayo's Doctors will interview you and make sure you qualify. I did this virtually as I live in NY and attended Jacksonville's PRC.

Mayo PRC is a well sought after program so there is a waiting list which can be lengthy, especially during Covid due to # restrictions. I suggest you get the ball rolling as soon as you are on board and are thoroughly aware of the program commitments. Also, insurance approval is important. It is costly without insurance.

What about the rehab program interests you most?

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@rwinney Great, thank you so much for the information! What interests me most about the program is, for one, just the fact that it even exists! I like that there are so many valuable components in tandem with each other, and that it lasts several weeks and just not two days. These people understand that dealing with chronic pain takes time on both sides – caregiver and patient. Mindset doesn't just change rapidly overnight, it can, but depends on the circumstance etc. I also like that it's not that far away from me and a large spectrum of age ranges are included! Unfortunately, a lot of the non-textbook problems I have are excluded from various trials/studies, and I feel that isn't fair. The majority of medical journals I've read out there are about crazy cases with unusual symptoms etc. Anywho.

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@rwinney

@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!
https://www.youtube.com/watch?v=8defN4iIbho
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?

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Haha yeah, I definitely stay busy. I'm a pretty ambitious individual, which can be unfortunate for my health at times. But, serving others and keeping physically active (within reason) keeps me out of trouble and feeling human. It also maintains my perspective and allows for me to reach and encourage others along the way. I'm sooooo thankful for that! All of the above vocabulary above you used to describe me are undeniably accurate lol and like you say, "takes one to know one." 🙂 I'm so sorry you have been suffering with such enormous pain and frustrations, but I am exceedingly thankful that you have crossed my path here. Your story has encouraged me more than you know, and for that I am ETERNALLY thankful!!! Yes, I agree with your assumptions in that I believe the program would greatly benefit me, and I intend to seek it out. I'll be talking with my doctors this upcoming week and see what they say, they are super supportive and proactive. I was almost in tears watching the video link, I'm pretty sure my mouth was wide open in disbelief that someone could pinpoint so exact all of the grievances I've (and so many others) been experiencing without solid answer or people looking at me with crazy stares etc. It all makes so much sense now…I feel even more hopeful now because I have information to now share with friends and family to educate and encourage them also. THANK YOU. You are a wonderful human being.

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@rivermaya34

@rwinney Great, thank you so much for the information! What interests me most about the program is, for one, just the fact that it even exists! I like that there are so many valuable components in tandem with each other, and that it lasts several weeks and just not two days. These people understand that dealing with chronic pain takes time on both sides – caregiver and patient. Mindset doesn't just change rapidly overnight, it can, but depends on the circumstance etc. I also like that it's not that far away from me and a large spectrum of age ranges are included! Unfortunately, a lot of the non-textbook problems I have are excluded from various trials/studies, and I feel that isn't fair. The majority of medical journals I've read out there are about crazy cases with unusual symptoms etc. Anywho.

Jump to this post

@rivermaya34 You are correct about mind set not changing overnight. I for one needed and still need to work on my behavior and emotions while managing chronic symptoms. It certainly takes repetition and commitment. Neuroplasticity by definition is the brain's ability to modify, change, and adapt both structure and function throughout life and in response to experience. I have experienced the benefits of this and hope you will too.

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@rivermaya34

Haha yeah, I definitely stay busy. I'm a pretty ambitious individual, which can be unfortunate for my health at times. But, serving others and keeping physically active (within reason) keeps me out of trouble and feeling human. It also maintains my perspective and allows for me to reach and encourage others along the way. I'm sooooo thankful for that! All of the above vocabulary above you used to describe me are undeniably accurate lol and like you say, "takes one to know one." 🙂 I'm so sorry you have been suffering with such enormous pain and frustrations, but I am exceedingly thankful that you have crossed my path here. Your story has encouraged me more than you know, and for that I am ETERNALLY thankful!!! Yes, I agree with your assumptions in that I believe the program would greatly benefit me, and I intend to seek it out. I'll be talking with my doctors this upcoming week and see what they say, they are super supportive and proactive. I was almost in tears watching the video link, I'm pretty sure my mouth was wide open in disbelief that someone could pinpoint so exact all of the grievances I've (and so many others) been experiencing without solid answer or people looking at me with crazy stares etc. It all makes so much sense now…I feel even more hopeful now because I have information to now share with friends and family to educate and encourage them also. THANK YOU. You are a wonderful human being.

Jump to this post

@rivermaya34 Thank you for your empathy and kind words. You are a kind, giving soul. I can't tell you what it means to me to be able to share the video from Dr. Sletten and have it make such a profound impact on someone who is looking for help and hope. I am ecstatic for you! You almost verbatim said what I said after watching and breaking down in tears. It's powerful when someone gets you, brings validation, AND offers a plan of action. You are so welcome!!! Good luck with your doctors this week. Let me know if I can answer any questions or help in any way. I'm always hanging around these neck of the woods.

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@rwinney

@rivermaya34 You are correct about mind set not changing overnight. I for one needed and still need to work on my behavior and emotions while managing chronic symptoms. It certainly takes repetition and commitment. Neuroplasticity by definition is the brain's ability to modify, change, and adapt both structure and function throughout life and in response to experience. I have experienced the benefits of this and hope you will too.

Jump to this post

@rwinney It's so interesting to me how when we're having "good days" we feel good about life, and when we're having "bad days" we are down in the pits…what I've been learning is that if we maintain the same mindset everyday, no matter the circumstances, then it's like an injection into our veins – where the effect just seeps in and affects every area. And not only that, but we can literally feel its effects. Positive, in this case. It becomes almost like a drug, where we feel we need that stability to function. So crazy what the mind is capable of! There's a coworker of mine I've been trying to reach for several years now, and slowly she is being drawn in which is so lovely to watch. Today, I got an incredibly gracious compliment which, in turn, encouraged me! She said she is so inspired by my attitude amidst the hellacious storms of life. And I told her that I need not worry about things that aren't in control, all we can do is embrace them and become like friends. It makes all the bit of difference in the world, if you ask me! Just a neat moment. Neuroplasticity, like you mentioned, is such a catch-22 because, for one, it completely alters a part of you yet, in doing so, tears down hard walls and rebuilds an enchanting forest city out of its ashes. A surreal gift…

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@rwinney

@rivermaya34 Thank you for your empathy and kind words. You are a kind, giving soul. I can't tell you what it means to me to be able to share the video from Dr. Sletten and have it make such a profound impact on someone who is looking for help and hope. I am ecstatic for you! You almost verbatim said what I said after watching and breaking down in tears. It's powerful when someone gets you, brings validation, AND offers a plan of action. You are so welcome!!! Good luck with your doctors this week. Let me know if I can answer any questions or help in any way. I'm always hanging around these neck of the woods.

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@rwinney Aww thank you!! I will absolutely reach out if I need anything at all 🙂

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@rivermaya34

@rwinney It's so interesting to me how when we're having "good days" we feel good about life, and when we're having "bad days" we are down in the pits…what I've been learning is that if we maintain the same mindset everyday, no matter the circumstances, then it's like an injection into our veins – where the effect just seeps in and affects every area. And not only that, but we can literally feel its effects. Positive, in this case. It becomes almost like a drug, where we feel we need that stability to function. So crazy what the mind is capable of! There's a coworker of mine I've been trying to reach for several years now, and slowly she is being drawn in which is so lovely to watch. Today, I got an incredibly gracious compliment which, in turn, encouraged me! She said she is so inspired by my attitude amidst the hellacious storms of life. And I told her that I need not worry about things that aren't in control, all we can do is embrace them and become like friends. It makes all the bit of difference in the world, if you ask me! Just a neat moment. Neuroplasticity, like you mentioned, is such a catch-22 because, for one, it completely alters a part of you yet, in doing so, tears down hard walls and rebuilds an enchanting forest city out of its ashes. A surreal gift…

Jump to this post

@rivermaya34 That was a neat moment. Positivity is contagious. Good for you!

I have always felt storms were a great analogy of chronic pain and bad days… they brew, and cause havoc, but always settle down, and the sun shines again. 🌞

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@anon37227499

Anyone out there with RSD/CRPS?

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I have rsd for more than 20years, but I can't get my family to understand that I hurt all the time. What do I do?

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