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3 week pain clinic

Digestive Health | Last Active: Sep 27, 2023 | Replies (21)

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@cfswisc

I have been wondering if this program could be helpful for me, and since you have done it, thought i would ask you. I have chronic fatigue syndrome/myalgic encephalitis for years. Worst problems are fatigue and brain fog but do have chronic pain as part of it. i have never taken opiates. It sounds like this program is more focused on getting people off pain meds, is that right? i also have very poor unrefreshing sleep and am constantly very fatigued, some days can't get out of bed. the program description mentions having to participate in all parts of program, but many days i wouldn't be functional until the afternoon. am i right in thinking this program may not be for me? Thanks!

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Replies to "I have been wondering if this program could be helpful for me, and since you have..."

I also have chronic fatigue syndrome on top of my Fibro - I also deal with brain fog and fatigue and have learned over the years how to deal with it and have adjusted my days to doing things that I can and not expect each day to be the same as far as what I can do one day versus what I did - or didn't do - the previous day. I will tell you that yes, they expect participation in all aspects of the program (physical therapy, occupational therapy, group work/discussions, etc.) and they will tell you that you need to participate in all aspects of the program, whether you're fatigued or not (everyone in the program is in the same boat, so you won't be the only person there all day who is tired and in pain - that's why everyone is going through their program, so participation in all aspects of the program will be expected). Everyone in the program is dealing with fatigue, pain, brain fog, etc. and the point of the clinic and all that they teach at it is to help you deal with your particular problem and learn how to improve your life using the information and techniques of what they teach and show you. They will not 'baby' you there or let you not show up in the mornings just because of your fatigue, I can probably guarantee you that. I guess you can think of it as they will give you "tough love" and educate you as to how to deal with what you are going through. As I stated (back in March of 2022) I took some of what was taught at the program and some things I (mentally) discarded and I have just "lived and learned" over the years what works and doesn't work for me and my situation. I am definitely happy to be off of all narcotic pain meds, I did not like being on them. I figure I'd rather have a clear mind (despite my brain fog messing with me, ha!) then have my brain be medicated with prescription meds that I would have to be on for the rest of my life possibly (and those meds gave me all sorts of side effects while being on them, so a lot of times that's worse then what they are meant to help you with). I had to go through several years of "doctoring" and being on various meds to figure out how to adjust my life so that I can live with what I have and function to the best of my abilities. Some of that realization came to me with help from Mayo's PRC and the rest I have just learned on my own. I'm not going to sit on the couch or in bed for the rest of my life, but I also cannot do everything that I ever used to do, so I've come to a happy-medium and I'm ok with that now. I did not know back in early 2007 what I know now and I attended the PRC program with hopes of being "better" after the program then what I was going into the program 3 weeks earlier. I would say that the PRC program has just been a part of my journey the past 17 years now (since I was first diagnosed with Fibro and CFS/ME in 2006 and some other health problems I've "accumulated" since then). It was worthwhile, yet I'm sure that now it's even more expensive then it was in early 2007 when I attended the program. I don't know where you live from Rochester, but I had to stay in a hotel the 3 weeks I went to it and that would still be costly now, along with your food costs during those 3 weeks also. **After re-reading your post again, I would say the PRC program is not all about getting a person off of prescription (and non prescription) medication - but that is a part of it. They also will help you out with sleep deprivation (as I think most people with pain problems have trouble with sleeping - I know I did and still do). They will help you out with nutrition and exercise and occupational and physical therapies. All aspects of your life and dealing with pain and all of the associated problems with it will be addressed. It's very educational also as they give you a lot of information and ways and means of dealing with your particular pain problem(s). And being around others with pain problems was a type of "therapy" for me too in that we all shared and talked with each other about our lives (pain related and otherwise). So I think you'd get some benefits from the program overall that you probably don't have now. It'll take work on your part while being there and I guess that's up to you as to whether you're willing to try and make some changes in your life that may help you with the rest of your life. It's an intense program and is meant to be so as you'd only be attending the program if you're at the point that you want to try and change or learn from Mayo's medical community things that they know that maybe you don't know or aren't aware of. I just came out of the program with a bunch of knowledge attained and I have put some of it to work in my own life and some other things that they taught I haven't. To me it's all about getting educated about your particular pain problem(s), finding out what works and doesn't work for you, and then using that knowledge to try and better your life the best that you can (and I've only come to these conclusions after years of trying to figure things out for myself and getting educated about what I have and learning through trial-and-error how to deal with my problems and to know what works and doesn't work for me). Hope some of this helps you out with your own decision as to whether you want to attend Mayo's PRC program.