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