Any experience with Residential Chronic Pain Treatment Programs?

Posted by alh123 @alh123, Apr 20, 2022

I am in my 12th year of trying to cope with a very disabling post surgical neuralgia near my knee. I am 62 yr old retired physician living in Canada .. My story is posted elsewhere on this site and describes the myriad of physical procedures and psychological approaches that I have tried since 2011. To cap it off I’ve had 4 goes at SCS incl DRG and very recently PNS. It is exceedingly disabling physically and mentally. I’m at the point where my Drs and I think I would best be served by going to a Pain Program that is residential . I’m not really capable of coping in an outpatient situation anymore like the Mayo offers . Does anyone have any experience or advice about where I might find a place like this ? Obviously , it needs to be multidisciplinary ( diet, psychological, medications ,strength and mvt training , possibly some treatment options if available ) with the main emphasis being on coping strategies as I believe I have exhausted most if not all therapeutic options. I need the discipline of inpatient program I believe . I have found one or two online that are perfect ,but are priced for the 0.1%. Any suggestions would be appreciated.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@alh123

Thank u very much for sharing your story . Hearing your journey of woe and thinking about mine .. it strikes me to think of all the time wasted in all that suffering , treatments , preparing for treatments and programs, Waiting rooms and then just all the time doing exercises both physical and mental… And all the time that that it took up, it could’ve been spent making the world a better place either just around our local group of family and friends or further abroad, it still makes me angry and bitter to think about it. This is because I was so focused on those things before my injury as most of us with chronic pain are . I’ll take your advice and look into one of these clinics more thoroughly. The thing that strikes me however is that I have a very peripheral pain process that can be completely treated with a few cc of local . Three weeks in a pain centre working on centralized imagery and distraction techniques I doubt is going to make a lasting change to my life when I get home to the same four walls and this is very visceral pain problem. I’m not sure how I could change things up so much that I could come back and not relapse … I guess it’s similar to a IV drug abuser who goes to a wonderful program for a month and then comes back To the same temptations. Anyway I’ve got some thinking to do and I thank you for your input. Any progress I make ill post here so you might see it

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Changing patterns of thinking can be challenging! For me, like the principles practiced in AA and NA, I got sick and tired of my focus on being sick and tired! With any habit, the way I think included, can be changed if replaced with something else. In my case it was about wanting to get my thinking changed from regret and my focus on pain, to what I want for my life. I want to spend my days in a more positive mindset and facilitate healing! I knew I wasn’t doing that and couldn’t do that if I continued with the attitude I had.
I started in small steps to replace negative thoughts. When I caught myself beating myself up or thinking about something unproductive, I would replace it with something positive. I wrote a list of things that I enjoy thinking about or that interest me. I kept it close by and would read my list when I needed to change my thinking. I had a therapist treat me using Biofeedback. It helped me learn how something as simple as breathing can lower anxiety and change my thinking. I’ve learned meditation since, which is similar and it continues to help with positive thinking. It has helped me to use an app on my phone for guided meditation. Even if my thoughts stray to other things, I’m continually brought back to focus on my breath which calms my mind and body.
It’s an individual thing! What works for one may not for another. For me, it’s about the effort I apply. I know my unproductive thoughts won’t change unless I do something to change them! It’s worth it to me to practice the tools I’ve developed and learned because I don’t want to spend my days living with regret and negativity. It didn’t happen overnight, but I’m better equipped now to change negative thoughts and my outlook about physical pain has changed for the better as well!
All my best to you in finding ways to help your physical and mental health!

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@anne4u

Changing patterns of thinking can be challenging! For me, like the principles practiced in AA and NA, I got sick and tired of my focus on being sick and tired! With any habit, the way I think included, can be changed if replaced with something else. In my case it was about wanting to get my thinking changed from regret and my focus on pain, to what I want for my life. I want to spend my days in a more positive mindset and facilitate healing! I knew I wasn’t doing that and couldn’t do that if I continued with the attitude I had.
I started in small steps to replace negative thoughts. When I caught myself beating myself up or thinking about something unproductive, I would replace it with something positive. I wrote a list of things that I enjoy thinking about or that interest me. I kept it close by and would read my list when I needed to change my thinking. I had a therapist treat me using Biofeedback. It helped me learn how something as simple as breathing can lower anxiety and change my thinking. I’ve learned meditation since, which is similar and it continues to help with positive thinking. It has helped me to use an app on my phone for guided meditation. Even if my thoughts stray to other things, I’m continually brought back to focus on my breath which calms my mind and body.
It’s an individual thing! What works for one may not for another. For me, it’s about the effort I apply. I know my unproductive thoughts won’t change unless I do something to change them! It’s worth it to me to practice the tools I’ve developed and learned because I don’t want to spend my days living with regret and negativity. It didn’t happen overnight, but I’m better equipped now to change negative thoughts and my outlook about physical pain has changed for the better as well!
All my best to you in finding ways to help your physical and mental health!

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Thanks for sharing that. I can certainly agree that’s what I need as well. I have been trying various versions of that on and off for 7-8 yrs or so,as I realize getting to that place of acceptance and positivity is the way to live a life with chronic pain . Problem is I can’t get there . I know what it feels like, as I had a 7 month period when a new spinal cord stimulator reduced my pain by 40-50%. I stopped focusing on treatments , got on with new experiences and living a new life ..it all came together very quickly. I couldn’t go back to work , but volunteered at my own pain clinic ,Got off opioids , joined a choir , started an ebike group and a mens book club. Even Travelled to Italy for a wedding …it sounds like a lot but it was all paced in small amounts and it was good. Sadly after 7 months my carriage turned into a pumpkin and my body got used to the stim with the pain returning …a trickle at first , followed by a river. Threw all my psychological training at it to no avail , the functionality deceased , the socializing decreased and the isolation increased , the opioids returned painfully slowly and within 6 mths I was worse than ever before . That was 2016 and I’ve deteriorated ever since to my lowest point now. What you did to turn your thinking around is amazing and I wonder how you found a way to discipline yourself to the degree it took to bring about that change
I can barely think or function with my pain levels most days and the idea of disciplining myself to do that work each day is just so daunting . Did you have help every day ? I am alone in a house in the suburbs . My wife works and my kids have left home . Most of my guy friends friendships were based on sports or outdoor activities, so I’m socially isolated .
My question is , I guess , is there a way of doing that type of turnaround in the setting I’m in or do I really need to spend huge $ and go to a program ? My concern is that I go to a three week program , get all hyped up and positive and then return to my same setting .
I’d appreciate you thoughts on this dilemma .

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@alh123

Thanks for sharing that. I can certainly agree that’s what I need as well. I have been trying various versions of that on and off for 7-8 yrs or so,as I realize getting to that place of acceptance and positivity is the way to live a life with chronic pain . Problem is I can’t get there . I know what it feels like, as I had a 7 month period when a new spinal cord stimulator reduced my pain by 40-50%. I stopped focusing on treatments , got on with new experiences and living a new life ..it all came together very quickly. I couldn’t go back to work , but volunteered at my own pain clinic ,Got off opioids , joined a choir , started an ebike group and a mens book club. Even Travelled to Italy for a wedding …it sounds like a lot but it was all paced in small amounts and it was good. Sadly after 7 months my carriage turned into a pumpkin and my body got used to the stim with the pain returning …a trickle at first , followed by a river. Threw all my psychological training at it to no avail , the functionality deceased , the socializing decreased and the isolation increased , the opioids returned painfully slowly and within 6 mths I was worse than ever before . That was 2016 and I’ve deteriorated ever since to my lowest point now. What you did to turn your thinking around is amazing and I wonder how you found a way to discipline yourself to the degree it took to bring about that change
I can barely think or function with my pain levels most days and the idea of disciplining myself to do that work each day is just so daunting . Did you have help every day ? I am alone in a house in the suburbs . My wife works and my kids have left home . Most of my guy friends friendships were based on sports or outdoor activities, so I’m socially isolated .
My question is , I guess , is there a way of doing that type of turnaround in the setting I’m in or do I really need to spend huge $ and go to a program ? My concern is that I go to a three week program , get all hyped up and positive and then return to my same setting .
I’d appreciate you thoughts on this dilemma .

Jump to this post

Trust me, it didn’t happen for me overnight! And I resisted the idea that thinking a certain way about my pain would change anything. My heart goes out to you and I truly understand your struggle. I’ve had chronic pain since 2003 and am disabled. I had to quit working due to pain and inability to function. I went from being really social, job I loved, lots of friends, very active to bedridden pretty quickly. I live alone and have been very isolated too. I relied on my doctors to provide answers, treatments and pills for my pain and conditions. I tried acupuncture, chiropractor, massage with limited and temporary relief. It’s taken me a long time to realize how important my mental outlook is about pain and how it plays a roll in my ability to cope and help myself. After years of therapy, both physical and mental, doctors that only provided partial relief, dependence on outside help, etc., I started using a phone app to meditate. I was pretty lousy at 1st! I had a hard time keeping my focus and I probably didn’t take it very seriously. I had just heard how good it was for me and was willing to try anything! After a while, I started noticing it helped relax my mind and body. It’s about focus on my breath. Biofeedback is similar and has medically proven benefits, which I had tried before. That led to me searching for other ways to apply natural techniques to my care routine. I started reading about nutrition, food, stretching exercises, posture, protein, vitamins, what exercise I could do, etc. I began to realize how much my mental outlook, positive reinforcement, meditation, mental distractions from pain, moderation and self care have helped me through my most difficult times dealing with chronic pain. I’m certainly not perfect in my practice! I’m more interested now in continuing to educate myself in those areas. It’s a practice I apply everyday. Little by little I’ve found things that help. This is a life commitment for me. I came to a point I wanted it so badly because I realized my doctors, as good as they are can’t take away all my pain. I had to do something about my attitude about that! I basically stopped resisting the idea that I have a lot more control over how I manage my pain than I gave myself credit for. Nothings perfect all the time, but I wouldn’t turn back now for anything!

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The stories from pain patients have one thing in common besides suffering. You have to arrive at the place that you want to continue your fight and find a way not to give up. When you are at the lowest point grab onto something for one minute, one hour, one day. I use reading as an encouragement to keep searching. My first pain clinic was in 1989. The beginning of the mind body revolution. Most doctors were skeptical about anything but meds or surgery. My collection of self help books are the old classics. Reading about seeming miracles was at first entertaining, but became encouragement. But you do have to let yourself go into it. It is very hard.
I will share an example of one of my first experiences at the pain clinic.
I am not crazy or delusional.
I had my 2 mentors do a guided relaxation session with me laying on the bed. I am what was called a type A personality and emerged in stress. They started at the top of my head and over a half hour plus I was led to relax the muscles down through my body. I was sweating so profusely. When it was over I was talking to the volunteer about how I really liked the part about the large ballon coming down, landing and putting all the negativity into it and it flew away.
She said, I never said a word about a balloon, I said, but it was your voice. They both smiled and said yes that was my unconscious mind being accessed and being involved in the session. I still find that hard to believe, but I had other examples of reaching into my mind and noticing hints about what tools were available to me. In fact balloons where involved several times. I had a hard time letting go for meditation, but I practiced it for three times a day for three years. It was a very slow process to resolve the many different pains from the physical trauma of so called therapy’s. I cannot take pain pills, they make me very sick, but the old tri-cyclic antidepressant amitriptlyline gave me just enough pain relief to help me sleep. It is used now for pain relief.
I had to keep working for seven more years to retire and I made it.
I am in my second battle with physical pain and the first thing I needed to do was not watch the news. If you can’t control what is inside you, you can control what is outside. Be a hero to yourself.

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@alh123

Thank u very much for sharing your story . Hearing your journey of woe and thinking about mine .. it strikes me to think of all the time wasted in all that suffering , treatments , preparing for treatments and programs, Waiting rooms and then just all the time doing exercises both physical and mental… And all the time that that it took up, it could’ve been spent making the world a better place either just around our local group of family and friends or further abroad, it still makes me angry and bitter to think about it. This is because I was so focused on those things before my injury as most of us with chronic pain are . I’ll take your advice and look into one of these clinics more thoroughly. The thing that strikes me however is that I have a very peripheral pain process that can be completely treated with a few cc of local . Three weeks in a pain centre working on centralized imagery and distraction techniques I doubt is going to make a lasting change to my life when I get home to the same four walls and this is very visceral pain problem. I’m not sure how I could change things up so much that I could come back and not relapse … I guess it’s similar to a IV drug abuser who goes to a wonderful program for a month and then comes back To the same temptations. Anyway I’ve got some thinking to do and I thank you for your input. Any progress I make ill post here so you might see it

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I just re read this and realize that the auto correct demon has bitten it. I apologize for the F bomb near the end.…..although it is quite amusing considering the context …might actually be an effective therapy !! LOL.
Moderator, I’m surprised there isn’t a filter to pick up mistakes like this . I hope it didn’t offend anyone ..it sure made me chuckle !

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@alh123

I just re read this and realize that the auto correct demon has bitten it. I apologize for the F bomb near the end.…..although it is quite amusing considering the context …might actually be an effective therapy !! LOL.
Moderator, I’m surprised there isn’t a filter to pick up mistakes like this . I hope it didn’t offend anyone ..it sure made me chuckle !

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@alh123, I corrected the f-bomb. Was “thinking” the word you intended?

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Ahh…yes. Thanks . Phew!

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@alh123, @angusconn, @pwgrimes, @anne4u, and others...

Hi everyone - back in April, @alh123 began this discussion thread while searching for a residential chronic pain treatment program. It provoked good, forward thinking conversation.

Today, I'd like to circle back by presenting a new, exclusive inside look at the Mayo Clinic Pain Rehabilitation Center/Family Day video.

Dr. Sletten of the Mayo PRC has been gracious to share this deeper dive into the concepts of pain rehabilitation and management with Connect, and we are very grateful to be able to share it with you.

Mayo Clinic PRC - Family Day week 1:
https://youtu.be/8ZGlYqiz53Q

As a PRC graduate, I am thrilled for Connect members to be able to learn PRC concepts in a more intimate way. Regardless of whether someone attends the PRC or not, my hope is that the material provides positive reinforcement for a plan forward in managing chronic symptoms. I look forward to hearing feedback, and am happy to answer any questions you have. Have a wonderful day!

REPLY
@rwinney

@alh123, @angusconn, @pwgrimes, @anne4u, and others...

Hi everyone - back in April, @alh123 began this discussion thread while searching for a residential chronic pain treatment program. It provoked good, forward thinking conversation.

Today, I'd like to circle back by presenting a new, exclusive inside look at the Mayo Clinic Pain Rehabilitation Center/Family Day video.

Dr. Sletten of the Mayo PRC has been gracious to share this deeper dive into the concepts of pain rehabilitation and management with Connect, and we are very grateful to be able to share it with you.

Mayo Clinic PRC - Family Day week 1:
https://youtu.be/8ZGlYqiz53Q

As a PRC graduate, I am thrilled for Connect members to be able to learn PRC concepts in a more intimate way. Regardless of whether someone attends the PRC or not, my hope is that the material provides positive reinforcement for a plan forward in managing chronic symptoms. I look forward to hearing feedback, and am happy to answer any questions you have. Have a wonderful day!

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Thanks a lot for posting this. I am getting closer to making a decision on going to a program like this. There is no doubt on my end of the need. The question is still which one, how to make it cost efficient enough so my wife and I can still retire and most importantly, putting together a comprehensive program of support for when I come home so that I don’t just fall into the same old habits and situations. This is much appreciated and very well timed.

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@alh123

Thanks a lot for posting this. I am getting closer to making a decision on going to a program like this. There is no doubt on my end of the need. The question is still which one, how to make it cost efficient enough so my wife and I can still retire and most importantly, putting together a comprehensive program of support for when I come home so that I don’t just fall into the same old habits and situations. This is much appreciated and very well timed.

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There is a program at Johns Hopkins Phycological Inpatient to learn how to deal and live with chronic pain. I can’t imagine how I can live with this for the rest of my life.

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