What PRC means: A letter from a Pain Rehabilitation Center graduate

I have a note back, @elkeot.

Steve, thank you for sharing this. I have been learning more about central sensitization, and your description of finding “real hope” resonates with me.

I appreciate more and more how powerful it can be to have a framework that helps make sense of what has been happening. There is hope in understanding—and, for me, understanding also restores a sense of agency. Not control over everything that happens, but a growing understanding of what I can do and how I can participate in moving forward.

I especially loved your description of “knowing the enemy by name.” I spent a lot of energy searching for one, straightforward answer that would explain what was happening. What I’m beginning to find feels different. It’s being able to recognize more of what is happening when it happens, and learning how I can respond to it. I can’t quite put into words yet what that means, but it feels significant.

Thank you for sharing what you learned and for giving others a glimpse of the hope you found.

Hello, thank you for your thoughts. I wonder though what was actually done to relieve your pain load. I know the diagnoses of why I have lived a lifetime of intractable pain but other than opioid pain meds which I was on for 35 years doctors have little advise for me. I now have too high tolerance for opioids to help me any longer. I have hypermobile Ehlers Danlos Syndrome, Small Fiber Neuropathy, T2 diabetes, vit B-6 Toxicity, and am recovering from Toxoplasmosis and Bartonella (hospitalized for 12 days) due to IGg3 immune deficiency, that attacked my nervous system and has made my pain screaming bad, Central Sensitivity, Autoimmune dysfunction, Mast Cell Activation Syndrome, and certainly not least, severe Akathisia, an involuntary movement disorder brought on by years of undertreated pain, just to hit the high points. I also have severe SIBO, an upper intestinal infection. Do these types of clinics give you any practical pain relief other than diagnosing the source of your pain? I know about and have tried acupuncture, deep tissue massage, brain manipulations, TENS units, Low Frequency Electrical Stimulation as well as almost every therapy suggested with little change. What do they do differently to help relieve your pain?

Well, that is certainly a long laundry list. I too have numerous issues that I will fight for the rest of my life. You have the advantage of knowing what you are fighting. I did not until Mayo. Until the day I started, I had no idea what the Mayo PRC clinic (the name does not really match what it actually is), however, it is a 3-week intensive training, learning, understanding practical tools and being educated how to deal with and manage daily chronic pain. The concepts, techniques, and most importantly, the tools that you are presented with that you can learn to implement, simply put, they work. It requires you to enter the program with an open mind to the tools that they will educate you with. The individual success totally depends on your commitment to be all in on everything that is presented. The old you is not coming back. That is a sad truth that I also needed to learn to accept. However, there can be a new you, but with modification.

Understanding the difference between acute and chronic and the different impacts that it makes on life, was also something I very much needed to learn and understand. You may not like all they present and will educate you with, but what they do is present fact-based evidence supported tools and techniques, supported by years of science, and the understanding of how to manage and live with lifelong chronic pain. You may not like the answers you will hear, but for the answers you don't like, there are tools and techniques that you can learn to live a more successful life while living with chronic pain.

Reach out to any of the Mayo locations, I attended in Jacksonville and the team is fantastic and get yourself registered in the 3-week class. It is every day all day. It is a hard commitment to make when you are suffering, but push through that, and do it. You will not regret the time spent. After, it will require daily, monthly, or maybe longer, daily commitment to implement what you learn until they become daily habits, and not daily chores.

In addition, having the regular support of trained professionals to help with the mental struggle of chronic pain, is also extremely helpful. Do not be afraid to find a highly trained professional that can help you with daily mental struggles. The combination of both mental health care and getting into and learning the concepts and tools provided during the PRC training is the best investment that you can make for yourself. Don't suffer in silence and the same ole same ole. Pick up the phone and get yourself into the 3-week classes. I know it is offered at Mayo main campus in Minnesota as well as Jacksonville Florida. I am not sure about the Arizona campus. In my training, there were people from as far away as Montana who came and benefited.

Dont wait another day of contemplation, make the call and get registered.

Life can be better. It will take time, commitment, and hard work, but life can be better.

Hope this helps.

@heystevej
I appreciate the time you took to describe your experience at the PRC at the Mayo Clinic. I have had 2 of my Mayo physicians recommend this program. I have been hesitant because I kept thinking how would I make it through a whole day, much less 3 weeks. I, like everyone else on this forum, have multiple health issues as well as, central sensitization. It’s a lot to deal with. After I read your letter, I felt very encouraged to give this program a try. When you are struggling you try everything from multiple drugs to acupuncture - only to receive temporary relief at best. It sounds like this program provides a structure to help you organize your life to yield the best results. I liked what you said about how the old you is not coming back but you can create a new you with modification. It doesn’t sound like an easy process, but the effort you put in will help improve the quality of life which is what we all hope for.
Again, thank you for your words of encouragement.
Christy

The first day I went, I told them straight out that I was not sure that I could make it through the day. However, I managed it. There is so much that you learn from the many tools they share and countless coping strategies that can make daily life better. Like you, pain is here to stay for me. However, the coping skills and tools have definitely made my life better. I have kept in touch with others in my group and all report improvement in life. Make no mistake, the days are long, you will be overwhelmed with information, education, and tools. Take a lot of notes to refer back to because you will not remember all.

I will also tell you that the first 3-5 days will be confusing and not make a lot of sense. They program repeats every three weeks so you may find yourself entering in the middle of a cycle as I did. However, having the notes, and listening and participating in questions and answers, once I caught up, it all made sense.

I have really surprised myself. I have not missed one day of the things i learned and what they taught. I think there is a large part of the people who attend that stop what they learned. do not make that mistake. I never thought I would follow through, but by doing so, life is better.

They offer a lot of after care programs. some are online and some are in person. I have been doing both.

Please take a chance. You have nothing to lose but everything to gain. Follow through and remember these words which you will learn. For this work for you, you must be all in on all four.

Take the step and make the time. It is a long three weeks. You will have bad days and hurt, but keep going and do it. If you can open your mind to what they teach and offer, it can change your life.

Do not hesitate to reach out anytime if you start and have questions of confusion, and I will do my best to help.

Regards
Steve Johnson

Hi Steve,
Thanks for your effort in replying to my post; I know these replies take your time and true concern for others! So, many thanks! I am now 77 years old and have lived with chronic now intractable pain for my entire life. I also have been a nationally competitive professional equestrian in many disciplines including upper-level dressage, competing, teaching and judging all my life on a schedule severely moderated by my pain load. I am also a published author so have not allowed pain to stop my life. Now however, since losing the support of pain clinics since DEA's unreasonable crackdown has shackled pain doctors in treating their chronic pain patients, my activities have been greatly limited. By the way, even at 77 I can still ride and train a horse better than most on a reasonable day. I have been to specialist pain counselors, done months long brain rewiring programs, and tried just about every pain therapy out there, both mental and physical. I have learned about every trick in the book to mentally and emotionally control pain and have benefitted greatly. I am now off all opioids and on low dose naltrexone, high doses of CBD for EDS, small fiber neuropathy, central sensitivity and MCAS pain and discomfort and THC for the movement disorder. They help. But I live in rural Hawaii and could never last even one day in an all-day program much less three weeks. I can't even go to the grocery store at the moment due to severe SIBO and the long recovery (12-18 months) from a 12-day hospitalization for toxoplasmosis and bartonella that attacked my CNS and caused devasting pain for many months. I feel I have controlled all I can mentally and emotionally and would like to know if Mayo has any other ideas for pain relief other than training your own will power and making major adjustments with brain flexibility work. I have been physically active all my life and know when I am strong enough again sitting on my horses will help me find my way back as they have done many times before. Mayo has been suggested to me as well but I don't think Mayo will help via Telemedicine for folks who cannot make the trip or tolerate the rigors of the program? It sounds way too tough for people who are in such severe pain that they would seek out such a program. Can you tell me what you gained practically from the program? How much has your average pain score been lowered from their program?

@lindaannstarr
Thank you for your curiosity about the outcomes of our program. It sounds like you are experiencing many challenges and frustrations in your own health journey. We are privileged to have graduates willing to share their personal success stories and love that they can provide inspiration or spark curiosity. One of our program's principles is to focus on the wellness journey instead of individual symptoms. As everyone's personal situation and experiences are different, I encourage you to learn more about the Mayo Clinic Florida Pain Rehabilitation Center Program through our Frequently Asked Questions tab located at the top of the blog: https://connect.mayoclinic.org/blog/chronic-pain-symptoms-rehabilitation/tab/faqs/
A virtual individual consultation can be scheduled to determine your needs and potential fit for this type of program. If you would like to learn more, please contact our team at (904) 956-1780