3 week pain clinic

I'm so sorry ginnyodie, and I commiserate with you. I don't have gastroparesis (well not officially, but I have a defunct small intestine 🙂 ) , and have been dealing with horrific pain for 11 years, so I understand your 'pain'.. pun intended. You know, these programs all sound good, but honestly, I don't think anything works as well as a drug to block pain.. and there is NOTHING for us GI people. We can't even do opioids b/c they make us sick (I think that is generally true). Heck, all this political anti-opioid propaganda (can you tell I have an opinion 🙂 ) has done is keep people who legitimately need pain meds from getting them. I'm a PT and a friend just had a knew replacement and NO pain meds.. NONE! She's a 70 year old lady, doesn't even drink and is about as much at risk for becoming an addict as I am going to be the next President. She is suffering horribly, and can't do her rehab as she should. It's ridiculous. Unfortunately, the medical community has now swung away from meds. If you have GI pain you are expected to just suffer, I guess.

I've done physical therapy for my abdominal wall and pelvic floor, exercise, meditation (I studied for a year with a buddhist monk), bought self- hypnosis CD's, rested, gone to the therapist.. and none of it has changed the pain one bit. IMO, something is causing the pain, and until or if that can be remedied, nothing is going to help except lying down with a heating pad. (that's what I do), which doesn't take it away, but feels better temporarily.

I pray someday there will be help for us.. and for you. I feel like that is about all there is left to do.

HOWEVER! - that said, I know it sounds a little 'woo-woo' (as I call it), but there has been some actual research to show that hypnosis (done by someone specifically trained to do this for GI tract), has been helpful for people with IBS pain (which is G(, at least). I know our minds our powerful, but I can't seem to get mine to block out pain signals no matter how much I've tried. I was going to explore this. I know there is some place out east that does this.. I can't remember.. and they have a list of therapist around the country. I'll try to look for it. In the UK there is a center that is big on the hypnosis and self hypnosis, so if you can't find a practitioner, you might be able to get something you could listen to yourself.. as a second best. There is a therapist who is trained in my city so I think I may give it a try. It would be something you could do, at least, that can't hurt. I'm pretty sure no insurance company would pay for hypnosis, unless you got a savvy therapist who knows their way around the coding system :), but I'm sure it would be a lot cheaper than 50K. It's not long term, they get you set up and then I think it's something you continue on your own.

Thanks for the links, I would be interested in hearing from anyone with a GI disorder who has been through that program. Maybe some of the folks you've tagged will chime in. Unless they have something really novel and that specifically addresses pain, I probably won't pursue it myself. i.e. biofeedback or hypnosis (which is about the only thing that has been shown to have some actual effect with IBS pain - so I'm going to extrapolate to the GI tract), which they don't do there. I might just pursue that somewhere. I haven't had the eval yet.

Ginnyodie.. Oh, this was in August, hopefully you are still here.. I was reading the threads about the pain program. All of the people had orthopedic type pain or were trying to get off of opioids.

I did see this also, which I had no idea was even possible, and certainly wasn't suggested to me!!!

" About 2 months ago my doctor asked if I would consider Medical Marijuana as a treatment for my pain as it is available in Minnesota since August. I agreed and and after a brief visit with a state-approved MD who referred me to a state approved pharmacy to decide what form and dose would be best for me. It was advised I take a 50/50 mixture of THC and HBD orally twice daily and a 100% THC SL spray for breakthrough pain which I rarely need "

I know people with some GI disorders have found marijuana to be a lifesaver, i.e. Chrohn's disease, just general GI issues. I would like to explore it, but haven't been able to b/c it's not legal in my state, even medical; so I don't have anyone to work with me on what 'dose' to take, etc, But heck, I had no idea I could go to a pharmacy in MN and have someone work with me! Might be something to consider. I'm gonna ask my Mayo Dr. about this, if he's still talking to me 😀 😀 . He'll probably say no, knowing him.

Otherwise, from what I'm reading about the pain program, I don't think it would be helpful for me.

It was diagnosed as autoimmune gastroparesis. Yes the cost they told us was between $45,000 and $50,000. That is the program and does not include any living expenses. All of the mentioned above have been useful heating pad for sure. TPN has taken some of the pain as not as much pressure to eat. Marijuana yes had been lifesaver. Illegal in our state. I though you had to live in the state to have medical card...maybe Minnesota is different. PT for pelvic floor, CBT for pain management etc

Thank you for all the responses.

I actually completed the program several years ago here in Jacksonville, Florida for Fibromyalgia which causes chronic pain among other issues and have caused me to be disabled. I found it to be very helpful and informative. The information and treatment given isn't just medical, but physical, emotional, nutritional and many other things to better improve your quality of life. Although my condition is chronic and incurable , I've been able to function without opioids and little to no pain meds during the flareups that I now suffer less of and my insurance covered my treatments.

Try it if you can get medical CBD/THC. Iowa has it and may have one near the border to your state. It works. It doesn't interfere with any of the drugs you would ordinarily take. My son is taking it for his autism but he has gastroparesis. It's works well. My son is now on Advil Dual. It's supposed to help with the belly pain better than tylenol and then advil. Plus you have to take less.

Just seeing this post today (3/6/22). I attended the Rochester 3-week Pain Rehab Clinic back in March of 2007 (I had been diagnosed with severe Fibromyalgia and been put on all sorts of medications and nothing worked except made me feel dopey and out-of-control of my own body). I was looking for a cure for Fibro, but found out there is none. The PRC was helpful and informative, but yes, VERY expensive and thankfully my insurance covered the cost. Three weeks of moteling it in Rochester was on me though. I have mixed feelings on PRC and what I got out of it. I took some of their information to use to help myself and other information I have disregarded over the years as it didn't work for me and my situation. They are very strict on eliminating ALL medications that you take upon entering PRC (even taking an aspirin is not acceptable). I did enjoy being around others who also had pain problems like I did to find out how and what had previously worked or not worked for them (people are referred to PRC by their physicians can have all sorts of various physical pain problems/conditions/diseases, not just Fibro, as what I had/have). Being able to socialize with others during those 3 weeks was helpful ('m still friends to this day with another gal who also went to PRC at the same time as I did in 2007). All of the nurses and other health professionals I encountered there were helpful, although my 'over-seeing' nurse for those 3 weeks was the most unfriendliest, unfortunately - our personalities just kind of 'clashed', I guess. Overall it was a worthwhile experience, but because of the cost (both for the program and to spend on a motel for those 3 weeks ... it was a Monday through Friday program with weekends off) can be cost-prohibitive for a lot of people. A lot of the information provided is common-sense in hindsight (exercise helps, being on narcotics - for me - doesn't, meditation helps, etc. ... basically finding out what works for me (or doesn't work) is mostly an individual experience and one I've had to 'fine-tune' over the years). So my opinion is the overall experience of going to PRC was helpful, but in the past 15 years since I have went to it, I've found that figuring out what helps me personally has mostly been on my own.

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!

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.

Thank you so much for that very informative really, it is super helpful. i guess one of my concerns is that if i overdo it, push myself, and don't stay within my "envelope," i tend to crash badly afterwards, and sometimes i don't even get back to my original baseline, but get to a new worse baseline. it takes me weeks to recover from traveling. So I'm concerned how 3 weeks of an intense program (plus travel, I live in the upper Midwest but not Minnesota) would leave me feeling. I don't think i need a lot of education about CFS, as I have the good fortune to have a great PCP who takes my concerns seriously, and was diagnosed 10 years ago. She has been willing to try lots of different potential therapies, and i have seen a psychologist as well. I know there is no cure, but i would be willing to try anything to improve my quality of life. I'll talk to my doc and see if she knows anything about the program (I think they need a referral, right?). Your reply was super helpful in giving me a better idea of what the program is about. Thank you so much.