Friday I am being discharged from the PT segment of the pain program at RIC after the PT told the MD that I am non-compliant. Never mind that I performed 1/2 the exercises because that was my pain limit for the first 2 weeks, taking one day off to attend a funeral. Yes, I took the following week off to a large degree. I did a few of the exercises here & there but not with any schedule or consistency. However, my pain level went from a steady 8-10 (performing 1/2 the exercises) to a 6-8 (after the week resting).

I read about the program. The MD stated he "believes the most appropriate treatment is the interdisciplinary program" and that "the tools learned in the program will be of the most benefit". So I was thinking there would be a variety of things done/discussed/etc. I did not expect the PT to express so little understanding and offer up a misguided interpretation of "non compliance" due to increased pain.

I don't feel any future benefit in this program. All I am seeing/learning (lol) is how to practice breathing techniques and color in a coloring book. I have been chastised and assigned to documenting everything. I almost don't even want to go on Friday but I am not that small as to quit the program via phone or email. I will be seeing a different MD but I have a feeling the "non compliance" will be passed on.

I just can't believe there is nothing more being done in this program than PT, OT and pain psych. While the amitriptyline helps me fall asleep faster, there is nothing being offered/done thus far that reduces my pain. Do I expect to walk out of this pain free? Hellz no. I know I will never be but I would like to think there is something out there that will bring the pain down to a 4-6 other than total rest. I can't live like that.

So sorry things didn't work out. You have given it a valiant effort and there is no shame in leaving. There's got to be some program that offers better understanding and flexibility. I know they have to show "progress" but geez.
I'd explain to the new doc about the situation anyway. Even if the "non-compliance" gets passed on they may view it and document it differently than the others.

Keep the breathing and coloring books and a little documentation. Those aren't bad. I still write down my exercise, it helps me keep track of how I'm doing and if anything caused kickback.

I hope you find something else that helps you. Catra's experience with home PT was so good and helpful. I wonder if that might work better. The expectations would likely be different.

Do take care and give yourself credit. You gave the program more than a fair chance.

Sending hugs and healing love,

I am so sorry that this program hasn't worked out for you and I bet if you had just has the right physical therapist it would have made all the difference in the world. On the one hand...its only been a few weeks and they haven't been the easiest for you even outside of the program...but when you know something isn't a good fit you know it.

I wish I knew what the answer was for you...but there has to be a medical team out there that is a better fit that can support you as you work towards getting relief from this awful condition. When you find the right treatment plan...it will take time. It took me months and months and progress was SLOW...but it came eventually. You have to have a team supporting you though that understands that and can encourage you through the process not bully you or berate you when it goes slow.

You're in my thoughts...take care and keep us posted on how you are doing.

Thank you both for the support through this.

I hate that I can't get this program to work. I think I hate the fact that the only things anyone is doing is what has already been tried and failed. Unfortunately, the only thing that has been attempted that gave even the slightest indication of effectiveness was the hydrocodone and I think the reason it wasn't more effective is because I was so worried about being labeled a drug seeker that I didn't take it except when I REALLY needed it.

I firmly believe that an intensive program would be effective with the pain managed. No attempt at truly managing the pain leaves the program as another failure.

A program that is not flexible enough to meet individual needs does not sound like a very good program for CRPS. The physical therapist sounds very rigid in her approach. They need to be following your pain level and level of functioning and adjusting the program as needed. I agree with Little Paw in that I would listen to the new doc and if he has nothing positive to add you may want to stop. YOU have not failed, the program may have failed you though. ~mac

I hate when they try to treat every patient the same way with no variability. Everyone is different and as a therapist she should know this! She sounds like the type I would run away from, if I could run. I am so sorry this isn't working out for you but maybe it's for the best.

If they mention the non compliance , make sure they know it was due to increased pain levels..

Hi to everyone that has posted and to Always Believe,

I am sorry I am tardy to this thread, but I have found it a very interesting one to read just now.

I think all the comments have been great but there are two that I would like to emphasize that have already been said by others.

You have NOT failed. This program has failed YOU terribly. I would definitely state YOUR reasons for what they have perceived as "non-compliance". Oh, how different the attitude might be with the therapist if the tables were turned. If the therapist had YOUR pain and you insisted that they do the exercises to the fullest degree.

How easy it is for some to just chalk things up and say "non-compliant" rather than seek the reason for the lack of effort, such as PAIN.

I think in some cases, if a patient does not do everything demanded of them, they are immediately labeled as non-compliant when that may not be the case at all. Some people in the medical field just don't know what "non-compliant" really means and use it for any and all situations.

True non-compliance is more about the mind-set of a patient, not their limitations and abilities, or even the effort perceived. There is a BIG difference between, I don't want to do it, just because, and I don't want to push any further because I can't tolerate the pain that is being produced to do so. The first is I don't want to try. (non-compliant) The second is I want to try but the pain is too much to endure. (a compliant patient, but not meeting their expectations)

Patients also know what is beneficial and what is not, after having attempted certain tasks. The medical profession needs to have a little more respect for the patient. No one knows their body better than them. No one knows what they are feeling and the severity of their pain. If everyone in the medical field had a temporary personal experience of what they patient is enduring, I think there would be a lot more empathy.

Thank you all for the support in making this difficult decision.

I went for my "standard" 1/2 day today, with the knowledge I was going to be discharged from PT. She was actually nice and understanding. Although I am thinking it's more because she saw herself as winning. Don't care. My health, my body, my pain, my program, my function.

Unbeknownst to pain psych, I informed her that after much thought and having PT be removed from the program due to my taking a week to reduce my pain being put in the wrong envelope, I do not believe this program is effective for my needs. Mainly because the aspect of pain management is missing.

On to the pain doc (who happened to be a different one, my regular doc was out today). I explained the same thing: the pain management aspect is missing and I believe PT is an integral component and with that no longer in place, I need to end my participation in the program. He asked if the amitriptyline was helping. I told him I don't believe it is helping enough for me to continue on it and it's not like when my knee pain gets to a high level, I can take an amitriptyline and that will help bring the pain down. Than is what I need.

Finished up with OT where we discussed pacing and how to continue to move forward with that. She told me they are always available to email if I have questions.

Overall, I have a sense of relief at the moment. And a direction for the future...I will be calling a local PCP to verify they accept my insurance (and medicare since that starts in April). Once verified, I am contacting my insurance case manager to change my PCP in the system and enlist her help in transferring my records. If this new PCP doesn't feel comfortable (or I don't feel he has enough CRPS knowledge) to manage my pain & get some local therapies started, I will have him send a referral to the local pain clinic I discovered later in this game than I hoped.

TaDa!!!

Gentle hugs and hope for low pain days to all...and thank you again for all of you!

Thanks for the update...I've been thinking of you today and hoping it would go well.