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Mayo Clinic Pain Rehab Center (PRC) - What’s Your Experience?
Chronic Pain | Last Active: Aug 11, 2023 | Replies (113)Comment receiving replies
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.
Replies to "Hey Rachel! Sorry for my late response. I can't seem to find the link you sent..."
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Hi @chelle2001. It's nice to hear from you. Not a problem. Here you go:
Mayo PRC Family Day - Week 1 -
I'm so happy you had an excellent experience at Mayo. You must feel relieved to have met with internal medicine to rule out other possibilities for your symptoms. It's kind of like you want to find something, but don't want to find something at the same time. I recall my experience of it being a confusing time.
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.