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.

Colleen Young, Connect Director | @colleenyoung | Jun 24, 2022

In reply to @alh123 "Rachel ,I notice that you are a volunteer mentor as well as a graduate of the..." + (show)

@alh123, Connect Mentors are trusted members. You can read more about Mayo Clinic Connect volunteer mentors and their role here:
- About Connect Volunteer Mentors https://connect.mayoclinic.org/blog/about-connect/tab/volunteer-mentors/

betterway | @betterway | Jun 28, 2022

Isn't being in chronic pain the stuff.... Residential Chronic Pain Treatment Programs. Isn't that a mouthful.
Ok Group Therapy, with some bio-feedback lessons, and what I actually like the sharing with others who are also in pain. Really at least I feel like they get it. And I don't feel so much like a whiner talking to other who I know are in pain and all that goes with it. After hanging out in the institutional like setting, no matter how homie they try to make it. You will eventually have to go home where your help is really needed to keep life going. Sadly, you will not like being able to do more and doing your best not to make the situation worse. Which you may feel you are regardless of your best efforts. All I can say Is hang on to hope and do your best and if you are doing your best (how do you know) don't be too hard on yourself.

BeBold | @bebold | May 29 11:19am

In reply to @rwinney "@alh123 I'm glad you've looked in to PRC more and feel it may be a fit..." + (show)

@rwinney

@alh123 I'm glad you've looked in to PRC more and feel it may be a fit for you. I understand your insurance concerns and about traveling from Canada.

For me, it was between Florida and Minnesota as they were each a few hour flight to get to from New York. I preferred Florida because Dr. Sletten himself was there and quite simply I'm a more of a tropical kind of girl!

I reached out to Erica Torres, Program Admissions Coordinator at the Florida campus and was advised that the education provided at all 3 campuses is the same however, the locations vary by enrollment/group structure and facilitation of groups. I recommend reaching out first and foremost to understand cost, insurance, etc... that is a pretty big detail.

Here is contact information:

Rachel Harris | Coordinator – Pain Rehabilitation Center | Mayo Clinic 5777 East Mayo Blvd Phoenix, AZ 85054 |Phone: 480-342-6240

Peg Dokken RN
Admission Coordinator
Mayo Clinic Rochester
Pediatric Pain Rehabilitation Center
507-255-1918

Erica Torres MSN RN
Program Admissions Coordinator
FLA Mayo Pain Rehabilitation Program
904-956-1780

I'm sorry, but I do not have any knowledge of Cleveland Clinic or any other pain rehab programs. I initially applied to be medically evaluated at Mayo because they were the best of the best, however was denied. Basically, my conditions were not further treatable and could be handled in my local area. That was a bit of an ah hah moment which lead me to Dr. Sletten's video. My own common sense and assessment of my symptoms, medications, emotions, behaviors and physical deconditioning, lead me to believe Mayo's PRC was the best rehabilitation center for me.

If you decide that you want to apply directly to Mayo Clinic, here is a link:

- http://mayocl.in/1mtmR63

There's a lot to think about, but I assure you that dealing with the Mayo Clinic is super easy! Everyone I spoke with on the phone, met in person and worked with at PRC were amazingly helpful and accommodating. I encourage you to reach out.

Jump to this post

Hi Rachel,
I'm layng in bed, now week 3, realizing I'm kind of the only person who cares if I have any kind of life. I know yoy have read my posts re: CRPS, post 4x laminectomies etc.

I recently fell (10 weeks) and have pain in my right buttock I never had before. I'm feeling very trapped in life right now.

Walk-in: xray/mri. "Its your back. Let me inject you."
Me: "NO. I have CRPS, it can spread and you don't even know where the pain is from to know where to put the needle. The pain is in my hip not my back."

Referral.
I go to an ortho surgeon.
Dr: "you have an SI sprain. I will inject you. Or put in a scs. You probably need a fusion but I won't fo that and you won't want me to."
Me: "No spinal cord stimulator, they rarely work and scar tissue makes thing worse esp with CRPS also. You don't kniw gor sure its my si joint, that's not even close to the pain. The pain is up in my hip crest. No to an injection."

I get a referral to a hip guy by my pcp. He looks at my mri, decides its my back without seeing me and refuses the referral.

Me. Ill just go to bed till I die because I can't even pit weight on my leg anymore. This pain is taking me down and I have a pretty high pain tolerance from 45 years of crps - big spread from long covid. I have been in bed for 3 weeks. My 02 without cpap is high 80s. Pulse 130-150 on exertion. BP no.longer controlled die to change in drug store and brand of drug. Hopefully getting fixed, long story.

I'm laying here while my dr arranges home nurses to help me bath. I am deciding tho I've fought a wheelchair for a year, ok. This is the beginning of the end. I fell. We don't know what I did because nobody will help me figure it out. PT thinks I might have torn my gluteus muscle. Home nurses might as well be hospice because nothing is being done to get me out of bed, just to accept I'm here.

I'm not ok with this ending up being the end of my life! I'm 69 and fell. Prove its my back and ill live with it in a chair I guess. Waiting for the day I feel done and leave because of something so so stupid. I fell. Something happened. Just tell me what so I can get out of bed before I get a blood clot which I seem to be the only one who cares. I keep thinking I wish I had hit my head on the tile floor instead of my butt and just died.

Last night I'm thinking again about PRC. My insurance pays 100% medicare/medigap, plan g.

Going there lets my pcp off the hook which I feel too mad to do (weird I know dince its about my life, not theirs.) I started the process last year but then november came and there wasn't any place I could afford to stay.

Now summer, I can probably get an airb&b place for a month near the hospital.

So, there are reasons to go in general because of pain. I don't take any opioids tho right now I'm on prednisone 20mg just to get me through the pain. I asked for a low dose, she gave me 2.5 which did nothing so she jumped to 20. No help with my hip pain and I kniw coming off is a nightmare with most likely a nasty crps flair.

Help. Can PRC help with diagnostic testing at all if in prc? If its my back, well ok. Then I need intense PT because I won't do nerve blocks anymore. Nothing invasive.

Would live your thoughts. I'm withering away in bed and seem to be the only one who cares as sui feels like it will be the end result. Because nobody else cares but I do. I just fell! I've lived with crps and etc for 45 years. This stupid fall is what ends my life? I'm 69. I've decided to do.life in a wheelchair even tho I probably don't need to.its just lack of a dr caring to find out what is wrong.

I quit PT and Chiro because walking got to be non-weight bearing.

What about PRC before I just give up on myself abd the entire medical profession. I want to.just quit therapy, never leave my house or bed again till they find my body. Lack of desire to help find out what is wrong is about to take me down for good. I'm dehydrated from just sleeping, not eating, not drinking and trying to not care.

But I do care. This stupid fall. Something happened. Will prc help but also try to find out what is wrong with this new hip pain. I get drs not even touching my body but weiting notes if my reflexes, leg strength etc but never touched me and not even paying attention to where the pain is. Look at my mri and say "yup back."

I'm a nurse. You can't note reflexes if you never touched the person. I'm laying in bed eating sugar.

I need help to care. I need help from somewhere. I don't take opioids tho I take 1mg of ativan for years at night. Will they take me off of that "cold turkey" as its such a small dose. When I've done that my anxiety goes thru the roof.

If I apply to prc, should I wait till I'm off prednisone? Take myself off ativan slowly first? Will prc see that this hip pain is different, bew, and help me figure it out or do the same as everyone else. "Shut up, its your back."

Help??? Thoughts??? @rwinney

I too have central sensitivization with crps. Watched part of the video.

I feel desperate and you know that thing of "if I go, leave the world, then they will know I was actually hurting." Toxic stupid thoughts and they still won't care except they can be done with me.

I want to be done with me too.

I.keep thinking it just not fair. A stupid fall and lack.of any dr giving a crap ends my life. Stupid. Angering. But close to just giving up. It feels like that's what they want me to do. I'm very concerned about depression as I'm bipolar and that is a long dark hole I can't afford to go down.

Thanks Rachel and all who read.

Rachel, Volunteer Mentor | @rwinney | May 30 11:59am

In reply to @bebold "Hi Rachel, I'm layng in bed, now week 3, realizing I'm kind of the only person..." + (show)

@bebold