ken870 Posted March 25, 2011 Report Share Posted March 25, 2011 i have come home from mayo for now but they want me to come back in july to start a three week program for pots and fibromyalgia so i was wondering if anybody else had been through the comprehensive pain rehab center atthe rochester mayo clinic. Quote Link to comment Share on other sites More sharing options...
comfortzone Posted March 26, 2011 Report Share Posted March 26, 2011 Wow - happy you are home & I hope things went okay? Someone that posts here was asking about this program not that long ago- can't remember who ... hopefully they will see your post here and write abou it.I don't know how much you like to read - but there is a book for about 80 bucks on Amazon.com by some doctors called Hypermobility, Fibromyalgia and Chronic Pain.... I mention it in case you have an interest in learning more about at least FM and the pain issue. Has anyone checked you for joint hypermobility? Often the POTS - hypermobility issue goes along with a pain syndrome for some folks - and I guess the mystery of fibromyalgia is also included to some extent in this loop.Wishing you well! Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 26, 2011 Report Share Posted March 26, 2011 I went to the introductory meeting for the comprehensive pain rehab center in Rochester (2003). Despite years and years of severe pain, I had just begun taking pain meds a month prior to going to Mayo. My husband and I exited after a couple of hours of listening to the presentation. Their mission (at that time) was to teach you how to cope with pain sans medication. Attendees were treated as if we had a narcotic addiction? Since the cause of my pain was indeterminate at that time, the pain rehab was completely ridiculous to both of us.It is quite possible that the rehab center currently takes a different approach? Get plenty of information before you commit. When I was referred they wanted a month long commitment from me and I wouldn't be able to leave the facility for the duration.Good luck and let us know what you find out. Quote Link to comment Share on other sites More sharing options...
comfortzone Posted March 27, 2011 Report Share Posted March 27, 2011 Again I hope that person that went to this sees this thread - I got the idea from reading what they wrote that the focus was exactly like what you described - to live your life with the elimination of pain medication. Maybe the website gives info - or the Mayo Proceedings readings on the internet could give clues about it.... At first pass I would simply have to wonder who the heck came up with this idea???? But there is a lot of science they are privvy too that I'm not - but heck that book I have talks an awful lot about pain and FM and dysautonomia too....with science. Never in the book did it suggest taking medications to relieve pain was something to be avoided. I take medication for severe arthritis and a bunch of other itis's as well as small fiber neuropathy and Ehlers-Danlos Syndrome... I would have to take a pass on this program too... Wouldn't mind reading the literature and learning what they have to share that way - but to sign up? If the focus is irradication of pain meds by forcing a contract to such measures as a 'help' - to the patient - I would have to pass.... I prefer to trust the doctors that care for me in pain management with the use of medications because they improve my quality of life.... My guess is that they would teach cognitive behavioural therapy techniques to help cope ~ and other proven non-med aids ~~~ which is wonderful.... but to exclude pharmaco-therapy seems a bit unusual to me. Quote Link to comment Share on other sites More sharing options...
ken870 Posted March 27, 2011 Author Report Share Posted March 27, 2011 the deal with the medication is what they told me they look at the meds you are taking then they determine if they would help you or hurt you and if they think it is not good for you they will give you another drug to try but if a person comes there with a box or sack full of meds they will cut there meds out and when they complete the program they are usually down to two or three meds or less. Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 27, 2011 Report Share Posted March 27, 2011 Maybe the website gives info - or the Mayo Proceedings readings on the internet could give clues about it.... They gave us the literature in the form of a brochure weeks before the introductory presentation. The literature was intriguing, even inviting, but the actual rehab presentation did not match the literature. Yes, they would teach cognitive behavioral therapy, but you were not allowed to use any pain medications. I ended up feeling like they were trying to commit me to a drug rehab center, which I obviously did not need. The only drug I was taking at that time was low dose hydrocodone. Insurance typically does not pay for the rehab clinic. Again, this was several years ago, so it is possible they've changed the program. Quote Link to comment Share on other sites More sharing options...
mkoven Posted March 27, 2011 Report Share Posted March 27, 2011 I did a similar chronic pain rehab program at RIC in Chicago before my eds diagnosis, and before POTS kicked in. It was helpful in teaching me pacing techniques and some new ways of thinking when I feel really bad. The med approach at RIC was more flexible. They said they wanted us off a lot of meds, but it was actually more flexible. IT was outpatient. I was glad to have done it, but now with my eds and POTS diagnosis don't know how it would have gone. They sort of suspected some form of hypermobility, as I kept getting new injuries, different from the ones I'd come in with! Quote Link to comment Share on other sites More sharing options...
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