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

Hey Rachel! Sorry for my late response. I can't seem to find the link you sent me with the PRC Family Day Video#1. Do you mind resending? I was just about to leave for Mayo when I last spoke with you at the end of September. I was there for two weeks and I've been in recovery mode and playing catch up since I returned. It was an amazing time there and I'm so grateful I had the opportunity to go. The level of care there is exceptional.

The General Internal Medicine doctor I met with suspected CSS right off the bat. He still did testing for other things just to make sure we weren't missing anything. But nothing else showed up, except the diagnosis of lupus and fibromyalgia which I already had. But what was interesting to find out is that my lupus is not very active right now, so the CSS and fibromyalgia are what is mainly driving my symptoms and what needs to be targeted for treatment.

I did get a referral to the PRC department and I met with the nurse for my initial consultation. She felt like I was a good candidate for the program. However, they want me to work on getting more foods in my diet before considering me for the program. They're concerned that the program will be too much for me if I'm also having to work on adding more foods back in. I've only been eating one food for the last year and so my nutritional levels aren't so good. So, that is my task to work on now that I'm home. The hard part is that I believe the CSS is affecting my ability to add foods back in. I've tried before to add foods and my body reacts strongly with a flare up of pain even when I try just a tiny amount of one food. So, it's going to be a challenge and I'm not sure I'll get to the goal that the PRC team wants me to be at before they'll consider me. My thought is that I may need to get the cental nervous system to calm down first before I'm able to successfully add foods back in.

I do have one question that you may or may not be able to answer. During the consultation, they said I would need to agree to be weaned off four of the medications that I'm on. It sounds overwhelming to be weaned off of four of my medications in a three-week period of time. Do they work on one med at a time? Are you able to explain the process of how they do this? I did ask them this question but the only answer I got is that they decide this on a case-by-case basis. I'm just worried that this might be too overwhelming for me. I'm totally on board for being weaned off my meds, but ideally, I would want to take it slow and tackle one med at a time. I just haven't gotten an answer from them that has helped in alleviating my fears about this.

Hello,
I’ve just read chelle2001 's concerns about medication weaning during PRC attendance . I am just about to have my video consults as part of the application process and I am concerned about this too. There is a bit of inconsistent messaging about this in the Mayo documentation and discussion about it . One of the people on this chat who attended the PRC , said that you had to wean off opioids completely in his testimonial ..this is also hinted at in some of the Mayo information sheets . However , other places say that there needs to be a willingness to wean and the process can be discussed on a case by case basis ,as you say . I’m concerned that chelle 2001 didn’t get a straight answer on this and I will certainly try when I have my medical interview this Thursday. What is your understanding on the policy re opioids and other meds like benzodiazepines. ? I am hoping to attend in January if I’m accepted and have already started an opioid weaning strategy. I would be very concerned if the 3 week program had this as a higher
priority say than the attempts to improve functionality with lifestyle change , pain psychology etc etc.
Three weeks is not enough time to wean off meds like these completely and I would hope that putting a weaning plan in place during the PRC stay would be acceptable .
Also I’d be interested if you could explain a little more about your advice about “believing in the system “ . I presume you mean buying in to the concept that changing your lifestyle and functioning will eventually diminish your pain , rather than waiting or depending on another treatment or surgery etc.? My concern about this approach is that you are encouraged to eliminate negative self talk and not mention your symptoms at all …this sounds a lot like denial and pasting on a happy face when inside you’re suffering with significant physical and psychological pain. Sort of like “ faking it , til you make it “ . I don’t know if I can do this if the people helping me don’t understand my losses and suffering past and present nor I theirs if I’m in a group
. I trust that the system in place at the PRC must have a way that acknowledges this need while it applies it’s therapeutic methods . ..no one wants to participate in a “pain party” . I’d be interested in any comments you might have plus what questions around these topics I should ask when I have my interview later this week.
Thanks

Hi @chelle2001. It's nice to hear from you. Not a problem. Here you go:

Mayo PRC Family Day - Week 1 -

Ok, so you know the lupus and fibromyalgia are there and have lived with them already and now a bit more of the unexplainable has been confirmed as CSS. Next is a plan to help guide you through these flares and ebbs and flows.

How do you feel about the referral to PRC overall? The nurse told you that you were a right fit for the program, that's awesome, but do you feel the program is a right fit for you, outside of the food component?

I was in class with a gentleman who was quite thin and working with a nutritionist during his 3 weeks. Everyone is different and may have specific situations so best not to compare, but I know the job continues once you get to PRC. I think you are spot on about calming your CNS as a #1 priority in order to begin introducing foods. I'm no expert but it makes sense based on what I've learned. Have you worked with a nutritionist, your PCP or a psychologist to assist you in introducing more foods? It can take a village.

Medications, a vital part of PRC and one of the most fearful parts for most. It was for myself as well. I'm tagging @alh123 to try and help both of you with similar concerns and questions.

From my understanding, yes each person is treated as a case by case situation which is exactly what you should want. PRC provides a team approach which for most of us was never present before. The beauty of the program is that you are well taken care of by a team of doctors, nurses, psychologists, therapists, pharmacists and you have peer support.

Understanding that the purpose of PRC is to present, teach and encourage a more holistic rehabilitation plan for patients to work towards a healthier, safer, more productive quality of life. No, they can't take away "chronic", they help to put the power back in your hands via rehabilitation and omitting pain behaviors. They teach tools and provide a comprehensive plan towards reducing pain and symptoms which includes medications that may have side effects, amp up your CNS and add to emotional, physical, and behavioral imbalances.

Medication tapering is what I wanted going in because I never wanted to be on all that crap in the first place I just did not know, nor did my doctors know any other way to treat my symptoms. Fear, anxiety and depression were a large part on my behalf and I willingly tried everything. If I had nausea I was given nausea meds. If I had headaches, I was given headache meds. If I had nerve pain I was given nerve meds. If I had spasms I was given muscle relaxers. If I had pain I was given opioids and medical marijuana. If I had dry eye I was given eye drops. If I was depressed I was given anti-depressants. You get the picture. I was scared as much as you both are and I almost backed out, but I put my trust in the most renowned medical facility and talked myself through the fact that these people know what they are doing from years and years of experience.

From my experience and understanding, medications are reviewed and determined which are beneficial and medically needed versus addictive and pain behaviors. From my understanding, Doctors, nurses and pharmacists work on a safe taper plan which is designed for each specific patient to help assist them in achieving their goals of medication reduction or removal. 3 weeks does seem overwhelming to accomplish this in, but I believe that depending on each patients specific situation there is flexibility on how and when.

Please, please, please try not to get ahead of yourselves. Although it's important to be our own advocates, we can also add to our problems by over worrying and over thinking. Work with the PRC team, ask questions and trust they will not put you in harm and will provide a safe, stable medication taper plan for your success. The other part of that is YOU. I was on board, as fearful and anxious as I was, to omit or reduce my medication intake. You will have peer support, staff support and hopefully the support of your friends and families. I support you.

Thank you for that thoughtful, intelligent and personable reply. What you say about yourself pre PRC is exactly how I feel about my meds in the big picture going in. I’ve weaned off opioids twice during my 12 yr journey and each time they eventually returned as they were the only thing that helped my functionality. I tried the many psychological approaches available plus physical interventions but sadly opioids were and still are the only thing that seem to help me get to the family dinner or the choir practice for e.g . This pattern existed for many years , but now sadly nothing seems to work consistently and my life has spiralled down to a very isolated , lonely place of suffering . Hence my intention to attend the PRC. I will take your advice to trust this group and so hope my life will change with their help . I do have a tendency to overthink these things as I was a practising physician when my injury happened . This journey has required me to turn off “Dr mode “ and turn on “ patient mode “ many times ..no time more important than this . Thanks again ,
Alan

You're very welcome, Alan, it's my pleasure.

You've really touched on the 3 factors Dr. Sletten thinks are important to weigh when considering PRC:

1. Treatments losing effectiveness
2. Emotional distress
3. Physical deconditioning

Rehabilitation =
"Bravery with acceptance of doing things differently"

If you can take a leap of faith and tear down the walls of the past 12 years, while realizing that in order to have change you must make change, you will give yourself a fighting chance. At the end of the day we all have what we have. Chronic conditions are still going to exist. However, if we are given a plan, a blueprint if you will, to follow and hold ourselves accountable to, we open the door towards allowing ourselves a better quality of life. Go for it!

I'm a big HGTV fan and love Chip and Joanna Gaines. Do you know who they are? Chip loves demo days on his home improvement shows. The point is...
"If you want to get a new kitchen, you've got to demo the old".

Best of luck with your appointment tomorrow. Stay in "patient mode" and know that you are worth this investment. Please keep me posted on how things go.

Alan, I'm interested to hear how your phone appointment went with the PRC team. Did they feel that you are a good candidate for the program? What are your thoughts at this point?

Hi Rachel,

Thank you also for your reply. What you shared was helpful for me in not being as fearful of the weaning off meds process. I am very interested in the program and do think that it would be a good fit. Basically, what my doctors have done in treating my chronic pain for the past five years is not working. I've instead continued to get worse. This is not a knock on my doctors. For some people, medications work great. But for me, I react to medications, so they may help me to some extent, but they also make things worse (by causing more pain). The PRC program offers a totally different approach to treating chronic pain and this is what I really need. I would love to be able to eliminate or at least reduce some of my medications. I feel like a walking medicine cabinet and I hate that!

However, I'm not certain if I will be accepted into the program. As I mentioned, they wanted me to work on adding more foods into my diet before being considered for the program. I've tried over the past few weeks, but when I've tried to add a new food in (I'm choosing bland foods and starting with the tiniest amount), I flare up with pain that's unbearable. It's been a discouraging experience. I have sought out help from my doctors, counselors, nutritionists/dieticians in the past as this issue has been going on for the past five years. My doctors' solution is to add more meds or increase the meds I'm on. I did CBT with a counselor for three years. It did help but was not enough to solve the issue. I've also met with a nutritionist and a dietician. They know how to give me a plan for introducing foods, but are at a loss for how to handle the flare ups of pain that I suffer when I do. I'm an oddity because most people don't react to food unless they have food allergies, which I don't have. I now understand that my reactions to food are part of the CSS. I reached out to the PRC today to see if they will consider taking me as a patient even though I haven't been able to add more foods back into my diet. I really believe that we have to tackle the CSS first before I'm able to successfully add more foods back in. We'll see what they say (fingers crossed).

Hey there- @chelle2001. Given all you've just expressed, you seem to have a pretty solid handle on understanding CSS and what your best path forward is. Recognizing that can be the first step. Good for you!

Regarding the past 5 years of your treatments, you're right Doctors have their lanes of specialized knowledge. Most times they do the best they can with what they have, know or are willing to expand upon.

I also experienced hyperalgesia which is when pain is intensified by medications, mainly opioids, and causes an adverse reaction. It took a while to come to grips with that one.

Please remain persistent with PRC as you are doing. Express all that you have here to me on Connect and stay in communication with them. Perhaps emailing a follow up with your thoughts, wishes and intent in addition to phone conversation will be helpful.

Stay diligent and keep the faith. Please let me know how things progress. 🤞🏼🤞🏼🤞🏼

PS: When replying to a specific post, hit the blue "Reply" button plus tag the person you wish to see your response by including their "@title". For example @alh123. This way they know your reply is meant for them and they will receive a notification, if their notifications are turned on. After tagging once, you can just hit reply within the continued conversation.

Hi @alh123, I'm interested to hear how your phone appointment went with the PRC team. Did they feel that you are a good candidate for the program? What are your thoughts at this point?

Thank you, @rwinney! I appreciate that and I appreciate you! Blessings, Michelle