Monday, July 29, 2013

Considering Pain Rehab

Since I've not had any success from the preventative medications and since I've decided to get off the medication roller coaster, my migraine doc has suggested that I could benefit from the Mayo Clinic Pain Rehab program. This same suggestion was made by the pain clinic after I attended Mayo's 3 day fibromyalgia program. 
This program is one of just a handful around the country. It's a 3 week long intensive, drug-free, multidisciplinary program that aims to retrain your brain's interpretation of pain. It basically would be a huge jump start to all the things I want to start doing to improve my life. I'm reasonably certain it would be a positive and worthwhile experience in a vacuum. For that reason I've been considering it for the past week. 

Unfortunately, the problems would be numerous. First, 3 weeks is a very long time to be away from home for someone like me whose routine and rest time are so important to my ability to cope with ALL the pains and other symptoms of chronic migraines and fibromyalgia. This would be further complicated by 3 weeks of needing to be mentally and physically active from 8-5 every day. It was hard enough when I did the 3 day fibro program, I can't imagine keeping up that pace for 3 weeks. I keep picturing me in full flare, with a migraine and trying to learn and participate in a class. 

On top of all that I would have to stay with my sister the whole time, which would be super stressful. She has two dogs with high pitch barks, who bark ALL THE TIME. She doesn't cook so her kitchen isn't set up for it. I would literally be on my own for every single meal. A tough proposition for a vegetarian who struggles with her weight. Not to mention it would be expensive. Plus, I feel like 3 weeks is just too long to impose on anyone. 

The expectations of the program go beyond the daily 8-5. Each night we would be expected to be practice
the things we learn, going through meditations and such. We are supposed to be in a low stress environment during this time. There is no way to really make that happen unless I were to stay in a hotel but I can't afford to stay in a hotel for 3 weeks. Not going to happen. 

As much as I would love to attend I just don't see how I can truly make the most of it and gain all the benefits because of these barriers. Guess I'll just stick with my original plan and do these things on my own. 


  1. 3 weeks away from own bed is stress enough for me. Unless they 100% assured me my headaches would be better under control and/or the pain levels...I think you will do well just on your own. You are a very smart woman and very in control of making the right decisions in regards to your health. I have read so much about meditation and ways to get your mind off the pain but I find this extremely hard to actually put into practice for people experiencing levels of pain over a 5. I get the "whole" less stress and negative thoughts will only intensify the pain but I have never fully understood how they expect someone within the episode of a painful migraine to just think their way to a lower pain level. All one wants is to be knocked out and not experiencing any level of pain.

    I remember one of the PA's I saw regularly for medication mgmt at my Neurologist office and after an appt where the meds were not working...she said, "I am running out of tricks up my sleeve". At that point I had maybe tried 3 different preventatives and I thought...."geez, if we are already out of solutions", this is a sad day and time for people suffering with chronic pain.

    1. Mamie, it's actually not as much about thinking your way to a lower pain score as it is about learning coping skills you can turn to so that even if you're in pain and dealing with all the other nasty symptoms we deal with you're not accepting suffering as a given.

  2. I don't know if you know my story relating to my participating in a behavioral pain management program (I've written about it on my blog), but it changed everything for me in terms of coping and living the way we do.

    Is my pain better? No. Are my symptoms better? No. Has the frequency of my Migraine attacks decreased? No. BUT what did change was my ability to relate to the situation I'm dealing with in a more constructive, less bitter way that allows me to keep going on.

    The program I did is located in the Kansas City metro area (The Lemons Center), and the structure is M-F, 8 am - 12 pm for eight weeks. I believe they've since expanded to offer an identical afternoon program to serve the needs of more patients.

    I spent those eight weeks working: (1) In a group setting on mindfulness, relaxation & biofeedback and sharing experiences & challenges with my peers in a positive, guided support group style and (2) Individually with their psychotherapists and physical therapists.

    As it happens, the man who founded & runs the program I attended, Dr. Jim Lemons, founded the program they have at Mayo in Rochester. He's also a fellow Migraineur!

    I certainly get your concerns. I had major concerns about trying to do those half days! The prospect of full days would have been so much scarier.

    I thought this program wouldn't be any real help for me because I'd been trying to do every single one of those things on my own. Boy did my experience at The Lemons Center change my mindset.

    For one example, I'd seen a handful of physical therapists through my years with chronic Migraine, and they all made my symptoms worse while I was under their care because they didn't know what I actually needed.

    The wonderful people at The Lemons Center changed everything for me, and I am grateful for the experience (and the doc who let me know about the program & referred me) every single day.

    There are other programs that do the same thing other than Mayo. Not a ton, but more all the time. I know many people (especially docs, it seems) see Mayo as the be all, end all of medicine, but there are other good options that may seem more doable for you. I'd be happy to help you look for alternatives. Ya know, unless you want to come to KC to do the program at The Lemons Center & meet me in person! :)

    If you'd like to discuss this more, please hit me up on email. You know where to find me! We could even talk on the phone about it if you'd like.