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

Mayo PRC Family Day - Week 1 -
https://youtu.be/8ZGlYqiz53Q

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.