Mayo Clinic Pain Rehab Center (PRC) - What’s Your Experience?

Good morning. It's very nice to hear your positive input despite falling on challenging times. As I was sitting here at my desk after finishing morning stretches, I was reminded that today was definitely easier than yesterday. Yesterday was a "Difficult Day", as we call them in the PRC. I used to panic over those days and cave, thus exacerbating pain. but now much like you, I now have confidence in myself and knowledge from the PRC to get through the DD's with grace, not always ease, but grace for myself.

Remember "Stable, Moderate, Flexible"? You have hurdles in front of you, but your mindset is what you bring to the table for managed success. One day at a time, one moment at a time, heck - even the next 5 minutes at a time when necessary.

I can't stress "Mindset" enough as being our Super Power. Keep on digging in your PRC tool box. You inspire others (including me) to have a positive outlook. Dr. Sletten from Florida's Mayo PRC program told us during class that we will be much better prepared in life for future events like surgeries, emotional battles with loss or change. PRC tools go with us through life and that is a true blessing.

As a matter of fact, I'm attaching Dr. Sletten's CSS video on chronic pain as a reminder and refresher. It's a good teaching moment for those interested in the program, but also re-enforcement for those of us who have been through the PRC and could use a little back up.

Dr. Christopher Sletten - Central Sensitization Syndrome:

After the PRC experience in 2010, I thanked the Neurologist that tried to send me there. I told him simply" You saved my life." He has been my primary Neurologist, and he's great! Doc stopped me and said " you did the work . "

I had great years until 2013. This crazy thing continued to impact my CNS, and I developed Autonomic Instability. I ended up in the ICU 3 times in 2 years. We are getting that figured out. Then in 2019, I was called to meet with a Neurologist who spent 90 minutes with me and I began to learn about CSS. I didn't really give the discussion until thought until a year ago. The symptoms that he described had arrived! I was NOT prepared for what happed, but here I am. Mine is basically a malfunction of my sensory nerves. 3 years ago, I weighed 225. I weigh 130 today, because eating can be painful... very painful. Pain and nausha are a constant. It's good that I love to cook!!! I finally stopped the free fall at 130 pounds. (I weighed more in high school.)

How do we cope? We keep our brains busy with whatever we can do. Cognitive therapy works. When I do little jobs each day, that gives me self worth. I got rid of my power wheelchair, and use a manual. That makes me feel better about myself. My wife and I volunteer at church, and that brings self worth. You have to have the will to live and live with pain. You may never be pain free again. It's no fun and as you said, there are bad days. Today is one, but I got up and got moving. Fixed our 2 wheel trailer, pruned the wife's rose bushes, made dinner, cleaned up dishes... well you know the drill. You gotta keep moving.

Finally, take life one day at a time. Look forward to doing those things you love. Enjoy friendships with those who are looking forward to the future. I tell my friends that I am going to live until I die. I not going to die because I quit living. Be content and find peace. God bless

Just a short update to all. When you are not feeling well, keep digging for answers.

I had surgery Tuesday morning on 8/8/23 at Rochester, to help with a bad case of Gastroparesis. It took an endoscope and the now famous egg sandwich, to confirm. While the surgeon was in there, he also removed a 30mm precancerous tumor. All of this was done as an out patient and down my throat. AMAZING. I still have a huge up hill battle with other challenges, but 2 bad things are behind me. Sometimes good, comes from bad. I pray everyone is doing well. Keeping looking for answers and do what you can everyday.

God bless your journeys.

The patient needs to be a full believer in central sensitization and buy into everything that the 3-week PRC clinic is asking them to do, including rejecting prohibited therapies, moderation, and the idea that deep breathing and relaxation do make a big difference, and commit to it for not just the 3 weeks, but for 6 months. Otherwise, in the 2nd week, they may be asked to leave. In my daughter's case she has chronic dizziness and migraines. When she got to the PRC other participants in the program were bad-mouthing it. On day 6, she was still unwilling to give up the idea of having IV infusions to treat her migraines for 6 whole months. Even though both of her parents are on board and she can't actually receive any of the treatments that she wants without us taking her, the clinic requires the patient is a full believer. Anyone considering PRC for themselves or for their children need to fully commit to it. Recognize that it is not easy and the patient may face negative talk from other participants. Be ready or else you may lose your spot, wasting precious time and financial resources.

@johnnymnemonic wow, what a great perspective. Thank you for joining the conversation. It's not often that a parent voices experience about their child in the PRC program. The financial commitment can be a burden is not covered by insurance . I guess you could say it can be a bit of a gamble or on the positive side, and investment.

Having gone through the program, I can attest to the fact that you do really need to be a believer in the scientific concept of central sensitization and I think be confident that you have ruled out any other possible diagnosis. In my case after several years there was really nothing left to make sense of my symptoms.

I'm really sorry that your daughter is going through such challenges with migraine. I once was one of those folks sitting through infusions try to help migraine and other chronic pain issues. I gave it my best try for months and it just wasn't doing enough, that's when I realized I had to take matters into my own hands through lifestyle changes and Stress Management among chemical reduction. This can be a daunting process and require mental fortitude so I understand how your daughter may not have fully bought in if she wasn't ready . May I ask how she is doing presently with symptoms?

Hi @rwinney - We only left Mayo just last Wednesday. Due to all the other expenses we had incurred and flights on short notice being expensive, we drove home Thursday and Friday in our rental car - 16 hours. Our daughter is going to school this week and doing what she is supposed to do. We are basically following the guidelines of PPRC to a tee at home. So far things are fairly similar. She still has chronic dizziness. She still has pediatric non-eplieptic episodes (mostly at night). I feel the moderation is helping the ebb and flow of severe migraines. She has only used one rescue pill since we got a new refill early last week. We can report back here in a couple months with a better assessment. PRC doesn't promise a reduction in symptoms, but an increase in function. Through what we were already doing beforehand we were getting more functional, and learning PRC methods has helped reinforce and add positive behaviors and reduce negative ones.

The main thing I want to be sure comes across is that in "rounds" at PRC, the patient themselves must buy in. It doesn't matter if the parents are fully on board, the child has to be. Also to emphasize - because of what's out there on Reddit, etc, several kids in the program seem to have a very negative attitude. Quite frankly I'm still shocked that we got kicked out. My daughter paid a price for her honesty and there was no additional patience for trying to get her on board after a certain point. You can't just stay in PRC for the social time and the daily PT, you actually have to believe it or else you're out. And of course you can lie your way into staying (which we didn't do). Although in this particular instance I feel we were penalized for our honesty. "Open communication led to closed doors".

Do not let this happen to you. Be prepared.

In other words, you may think you "cut the mustard" but you might not cut the Mayo.