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Posted 1/21/2010 12:49 AM (GMT 0)
So I just got back from another Mayo trip. Saw a physical medicine doctor this morning who said basically that my diagnosis is that I have pain. Very helpful :) This afternoon I met with the head of their pain rehab program. Their flagship program is a three week session from 8-5 every day (during the week), where they focus on getting you off of pain meds and giving you alternative ways to cope with your pain, through biofeedback, relaxation and physical therapy. Unfortunately, they are booked through June. I'm scheduled for June 18th, but in the meantime they have a two day intensive program where they take their most important sessions and compress it into two days. That I'm scheduled for on February 8th. I'm curious. has anybody done anything like this?

Hope everyone is doing well and had a relaxing, pain free weekend!

Jenna
Posted 1/21/2010 2:57 AM (GMT 0)
Jenna


Yes I am familiar with it, they tried to push it down my throat, I was on Oxycontin 20 mg every 12 hours for pain. I was referred up to Mayo's because my daughter wanted me to come up there, and my Doctor thought it might be a could idea, I have some balance and walking problems and swallowing difficulities, and some times speaking problems, as in not completing sentences and lose of words, and also lots of numbness and tingling in my feet and legs, and problems with moving my arms and hands, and also some vision problems, and and other problems such as bouts of constipation, ( I have ulcertive colitis, and UC people usually never have problems with constipation) anyway these symptoms will come and go, and sometime they will last for weeks on end and other times just a couple of days, but when they go away I am often left with a permanent deficit! Anyway my Doctor refered me up there in hopes that they might run some new test and try and get to the bottom of this. I get up there and they run all the same tests that I have already had done. They sent me to Gastrointerology for what I thought was for my swallowing difficulities, but was in fact because I have ulcertive colitis, and he was unhappy that I was only having colonoscopies every two years and said with my history I should have them every six months! I asked him about my swallowing difficulities and he said I was not sent to him for that and I would have to make another appointment! None of the appointments I had was addressing the problems for which I went up there for! But they did not like that I was on the Oxycontin for pain. and they had an unexpected opening in this program, that your refering to, that they wanted me to go through, I even went over and interviewed for it, and I asked them if the pain meds could be causing any of my symptoms or problems, and they said it was doubtful! So I ask them if there program would help relieve any of my symptoms, and again they said they doubted it! I asked them why I needed to go through their program, and they said to get off the oxycontin and try to hopefully find other ways to manage my pain. But I told them, I was not sent up there for that, but to try to get a diagnosis for these other symptoms. They said there program would not help that and I would need to under go further diagnostic test for that! I had already spent 10 days up there, I was not going to spend another minute at Mayo or with there Doctors! And I told them I could not possibly stay right away for there next up comming session, and they got all bent out of shape.



To make a long story short, I left and I have never been back! And my Doctor said they wasted my time, and they did nothing to resolve my problems, nor did they address anything that he asked them to! He did not agree with them about my pain treatment either!



But what I have related was only my personal experience. Only you can determine what is right for you!



Good Luck to you Jenna



White Beard
Posted 1/21/2010 6:00 AM (GMT 0)
Wow WhiteBeard what a waste of time, money and effort on your part. I would have been some kind of upset over that sort of treatment, well it really was not treatment it was their thoughts on on what you needed. I sure hope Jenna has better luck.
Posted 1/21/2010 9:55 AM (GMT 0)
Jenna,
I'm not familiar with that particular program like White Beard is, but I am familiar with many of the treatment approaches they're talking about.

My opinion is that I'd be suspicious of any program that had as a goal to get you to discontinue pain meds. Now it's another matter for a program to have as a goal to get your pain under the best management possible, using as many natural, less invasive options as possible, but also medications if that's what works for the INDIVIDUAL patient. I'm skeptical of what sounds like trying to fit everyone into a one size fits all approach.

I think they probably teach some good techniques which a good pain psychologist, along with a good PT (and any other alternative practitioners like acupuncturists, massage therapists, etc.) could also teach. I think the short program you're going to may be worth it, but then again it's hard to learn some of these things quickly. All someone can do in that short a time is teach you a few relaxation exercises, guide you through them, a PT can show you some stretches, etc., but they're not going to be around to observe and follow you over time.

I know I could never stand an 8 to 5 schedule for 3 weeks. Again, my opinion, but whoever designed that schedule doesn't know much about living with CP.

I don't want to sound discouraging, but if it was me I'd look for some good resources close to me (like a good pain therapist, maybe some local groups that teach relaxation, etc.) unless you really think there's something about this approach that appeals to you.

Do what you think is best for you. But I don't think you need to wait to learn some of these things until June.

Hope this is useful in some way!

PaLady
Posted 1/21/2010 11:56 AM (GMT 0)
I thought the same thing as PaLady. There is no way I could sit for 8 hrs per day for three wks. Only if they provided a recliner, heating pad, & meds to control my pain. I guess it's worth a try if you think it would help. According to your signature your not even on any narcotic pain meds so what are they worried about.
Posted 1/21/2010 3:42 PM (GMT 0)
 

 Gosh Jenna, 

 

      Good morning *warm huggs* I saw a pain psychologist and learned biofeedback, etc. But, the goal was to give me more tools at my disposal. To assess my overall mental health.  To give me "trigger" techniques, coping techniques, help me to re define myself.... you get the idea.

 

      I dont see that you are on any excessive amount of pain medicines... So I am confused! Im ALL for alternative techniques, and over all good mental health as I truly believe our brains are another organ in our body that deserves to be "treated and cared for". .Maybe you should consider a doctor who will at the very LEAST document the symptoms have. That way, later down the line, hopefully, you will find a doctor that can "put all the peices together".

 

     I do hope you can find time to relax today. I am sure you must be exhausted. Stay strong.

 

*huggs*

  dani

 

Posted 1/21/2010 5:30 PM (GMT 0)
Hmm, I guess I didn't see that all as a red flag yesterday, but I was pretty out of it. He said that tramadol was made to act like a narcotic but without the habit forming problem, but that they've found that some people have become addicted to it. I guess its a good thing I didn't mention that my doctor just put me on the Fentanyl patch, I pick it up today. I think their aim is to try to prevent the problem that come with long-term usage, i.e. kidney problems, things like that. I'm not really sure.

So one of the guy's I dated in high school's father, who is now my best friend's father-in-law (catch that?), who is at the same time the father of one of my little brother's best friends went through this program years ago. (Did you follow all of that, :)) I haven't talked with him directly, but he spoke with my parents about it. He seemed pretty happy with the techniques that they taught him, though I do know that he's on many more pain meds than I, as we've compared notes.

I guess we'll just see what this two-day thing has in store. I fly back out to New York on Saturday to pack up all of my stuff, then my boyfriend comes out the following Thursday to help me load up the car and then to drive me home. But, things with him are a whole 'nother kettle of fish, as my grandpa used to say.

I have to admit, yesterday when my dad and I were waiting to see the pain rehab guy, I had a bit of a panic attack. Part of me really feels...I guess we'll go with guilty for not being able to deal with this on my own. Most days I feel like I'm a pretty heavy burden to my roommates, who turned tail and left, to my friends, who I don't really see much, to my boyfriend, who I know is starting to really get worn down, and to my family, especially to them, because they're the ones that have to drive me everywhere and pay for everything. I'm basically back to being a high schooler at home, minus the going to school part. And I know that financially we're in a tight place, and this doesn't help at all. I'm sorry, I guess I'm having a pity party for myself today. I'm just frustrated. I was hoping that the physical med doc yesterday would at least confirm my diagnosis, as nobody really has, but that didn't happen so I still feel like I'm floating out in la-la-land. FatherJohn asked in another post why we go to doctors, and I guess if I'm honest I keep hoping that somebody will magically look at my shoulder, say "aha", and be able to fix it. Or at least know what is wrong. But I guess that's the scared little girl peeking her head out, not the grown-up 23 year old I'm trying to be. I guess I just feel like I don't have the right to need things like heavy pain meds or special doctors or all of that. I've just got a shoulder that hasn't worked for two years. Some of you have had chronic conditions for longer than I've been alive, and all of you have more on your plates than one person alone should ever, ever have to deal with.

Whew. Okay sorry for that. I guess this is just a feel sorry for myself sort of day. I'm going to go down and hunt up some ice cream :)

Hugs to you all,
Jenna
Posted 1/21/2010 6:48 PM (GMT 0)
While I am not familiar with Mayo's exact program I am with biofeedback, relaxation, physical therapy, among many other mind body disciplines.


The single biggest question people have about things like this is does it work? Yes it does work, but it is not a cure and how well it works depends on how a lot of factors from the person themselves to those instructing on how to do it to how "devoted" you want and are able to become in this to how serious the condition is.

It may help, it may not, but I wouldn't hold out hopes for it replacing your pain medications. The most I would hope for is being able to decrease them.
Posted 1/22/2010 2:38 AM (GMT 0)
Okay WC wanted me to go to something similar. It was a 2 week clinic that would evaluate my medications to see if I was on the proper meds for my pain. I would see pt, occupational and psychology thrapists to try and get me to do certain tech to help me with my pain. (supposidly)

Now the reason for this was because WC decided that I was pushing this idea of the SCS too much and they wanted me to try and see if this clinic could do something to help me.

huuuugss

Scarred

P.S. No I didn't go cause I was in the middle of a move and things just didn't work out.
Posted 1/22/2010 3:02 AM (GMT 0)
Jenna,

I kinda of agree with Palady. This program may be great for some, but it's not a one-size fits all type of thing. I'd be weary of anything that trys to push you away from meds if in fact the meds are working for you. That's not to say that their techniques don't work. No one technique is going to take away your pain. Rather pain management is all about finding a variety of things to lessen your pain, and if medications work for you, then that is fantastic. You might think about trying some of the techniques they preach, just in conjunction with your current pain management program.

hugs,
Skeye


whoops! I just called you Melissa. Wow, you can tell I was tired when I wrote this last night!

Post Edited (skeye) : 1/22/2010 1:05:31 PM (GMT-7)

Posted 1/22/2010 3:24 AM (GMT 0)
Jenna, I think I am at a similar point. I fired my last PMS and labled him a quackologist. My PCP agreed to take on monitoring my pain meds and I have done well for 6 months. He knows I have limited access to doctors due to my work comp. He suggested a new pain clinic about 45 minutes away. I decided I would pass. Now that the pain has increased greatly, I am looking into the pain clinic. Their claims are they don't prescribe any pain meds and do no surgeries and no implants (already have a SCS). They claim that if drugs and surgeries solved the problem of chronic pain, people would not be hurting. Couldn't the same be said about their approach. How many news blurbs and headlines do you see that say, new cure for chronic pain. The reason that there is not one cure is we are all different and one approach will not fit all. That does not mean that we should not try. In 11 years I have tried many avenues. The one here is a 10 week program and you have to attend twice per week. Like I have said in a recent thread, I have I'll wait alittle longer syndrome and I am still not sold on the new approach. My PCP is out of town and I won't see him until later in Feb. and I will wait until I see him then. When I contacted the new clinic they did state that I could come to an orientation without a comittment. I might consider that. Does the program you are looking at offer such a thing?  Anyway, good luck and let us know how it goes.
Posted 1/22/2010 8:22 AM (GMT 0)
We have a couple of these programs here in my town and they are used extensively by worker's comp ins companies. They offer both inpatient & out patient programs. They are geared to get people off of all medications period. They use many of the modalities others have described to help lower the pain levels. Most preople I know that has went thru these programs came out a mess. Their pain was out of control and when they complained of pain they were told well what do you expect you are using muscles now that have not been used in a long time!! It was all pure quackery, I believe is FJ's term. By the time most of us got put on the heavy pain relievers we have already been thru the build up the endurance thing, going thru it again serves no purpose to me. Pain does not stop until the pain cycle is stopped no matter what kind of therapy you use to alleviate it.
Posted 1/24/2010 11:01 PM (GMT 0)

 

 

Why is it that when people hear that we take pain meds they automatically think we want to stop taking them?  Or that we need to stop taking them?  I understand that some people have addiction issues but that doesn't mean we all do...and it sure doesn't mean that we all have to stop taking pain meds...

 

If I were to stop taking my pain meds I would be in bed crying and screaming all the time....why would I want to do that?

 

I take pain meds....there, I said it.  I take them and I want to keep taking them.....there I said that too....

 

Me.

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