They use the pyramid to adjust your treatment plan. If over the course of the week performing your 'homework', you remain in the green light they will increase some part of the 'homework' (length of time/repetitions/add new/etc.). If you are consistently in the yellow light they may decrease some aspect of your plan.

As I just did my 'shoe' homework, I feel I am sitting between yellow & red. (probably leaning more red). Not sure how I feel about continuing much of my homework until I can get my pain down more.

It sounds like you are trying your best to work the program, I just hope the program starts working for you! ~mac

I'm just so discouraged at this point. My pain level has been elevated since the end of the first day (a week ago). I am finding that if I have to go to the bathroom more than normal, by the end of the day I am having to use the walker or scoot across the floor because I can't put weight on my leg.

And this book that I'm supposed to read is irritating me. I'm sorry, but why is "chronic pain" almost always associated with back pain/issues??? And when there is a diagnosed nerve component, why is that bypassed and it is automatically a 'problem' with the brain? I guess I could see the effectiveness of all the mumbo-jumbo if my pain was either at a more tolerable level &/or I had function. I don't. My pain level has been a pretty steady 7-9 since my first day in this program and was a steady 6-8 prior to. Sure, I can wake up at about a 3-4 but one trip to the bathroom and it doesn't get back to that.

I am struggling with going tomorrow...my kids are coming in from out of state tonight because their grandfather (my ex f-i-l) has been in ICU since Sunday night from an accidental overdose of one of his medications (not sure if it was insulin or a blood pressure med) and they found stage 4 cancer in his liver, lungs, tongue and throat. He is not able to swallow to eat and is refusing a feeding tube. So he is going home on hospice probably not going to make it a week. I won't even be here for my kids when they get in late tonight as I will be at my mom's for my stupid RIC (put me in more) pain program.

Having CRPS is like trying to chase out of your house someone that you don't want. They just run from room to room trying to avoid you, wrecking havoc as they go. The great news is... and I really believe this.. there is so much beauty in the world despite our CRPS pain and disability.

You and your family are in my prayers .. I pray for you and the CRPS battle you wage and for you and your entire family with your F-I-L's battle with cancer. I pray for Peace from Above.

Thank you Spike. There's a lot of negative history with that side of the family & my oldest daughter...I am trusting honest, pure love prevails in that situation.

I think one of my ongoing difficulties is that while there are similarities between CRPS Type 1 & 2, there are also distinct differences and that does not appear to thus far be acknowledged in this program. Example 1: The PT stating it is solely the sympathetic nervous system because the injury has long since healed. Not true with documented nerve damage. When I mentioned that, he was quick to question that I've had an EMG (2 actually. Permanent damage to 2 nerves). Example 2: The book that is required reading, while it does acknowledge and discuss CRPS, there is only mention of Type 1.

I really do not want to go tomorrow....

Hi AB,

I am so sorry to hear about your F-I-L. I hope that he stays peaceful and comfortable during the time he has at home. I am keeping you and your family in my thoughts.

I can understand not wanting to go tomorrow. It sounds like you aren't feeling that this is a good fit or at least that there is not much understanding of documented nerve injury. You're not just battling pain but significant change in nerve function. If you do go I would ask how treatment for that aspect can get built into your plan. It doesn't sound right to ignore it and maybe they don't intend to. Perhaps this is not something they see that often? BTW Did you decide about Feinberg? Send me a PM maybe when you have a chance....

Remember this week during the challenges that you are carried with affection by your friends here on NT.

I am sending extra, extra hugs.

That would be so frustrating.... Please... Do let us know how things go tomorrow. Please!!

Wow. Not sure what to say about this week.

New PT. Apparently, the last PT wanted me to do heel slides at home but I obviously did not catch that & it wasn't written down anywhere. She asked how I was doing and I proceeded to tell her my pain level was 6-7 on average prior to last week but was now averaging between an 8-9 with several periods of 10's. I was explaining how discouraged I was that I was in a greater level of pain after my first visit. She began to tell me that there were those heel slides that I was supposed to have been doing. I told her I wasn't sure how that was going to work if I was at a point of choosing between an OT exercise & going to the bathroom because they use the same number of spoons.. She said something to the effect of 'you need to stop talking and listen'. Fine. She had me to the arm bike. No resistance. Fine. She explained that exercise was to increase my cardio and give my nervous system somewhere else to focus. Ooookkkkaaayyyy. While doing the arm bike, she said she doesn't usually have patients purchase anything but that I should look into Amazon or something to purchase an arm bike. I explained that I am on disability and am having trouble getting insurance to cover my stomach medicine and can't afford anything. She said, well you can get one for like $15. Hello. Broke. Going to start randomly vomiting because I will have to pay for my stomach meds and cannot afford it. Once done with the bike, she has me doing heel slides....obvious struggle with the heel slides as my pain was pushing a 9. She has me only do a few (5?) of those and then wants me to do 10 quad sets, then onto my side for clam shells. WTF is wrong with her???? Middle of my clam shells, I'm toast and tears are streaming. She waits until I have done the amt she wanted me to do, then tells me to lay on my back and do some relaxation breathing. Right. I'm at a 10. She prints out 'homework' and leaves the gym. Apparently she went to get the psychologist since that was my next appt.

So psych comes in and introduces herself as she is subbing for the one I had last week. (I'm noticing an issue with consistency here). We head up to the 8th floor where her office is. She tells me PT told her I was wanting to quit the pain program. WHAT??? Seriously, there is something wrong with that PT. I told her 'No, I don't want to quit, I am struggling to find the positive when my pain has increased since starting last week.' She then goes into a lecture about the pain cycle and how it works. I told her I understood that but I am stuck on how exactly I am to think down a level 9-10. Instead of directly answering, she returns to the pain cycle. And more blah blah blah.

We had a lunch break at that time but I chose to stay in the waiting area on 8 due to pain...not wanting to walk back to the elevator, down to 2, then down the hall to the kitchen and back to the elevator, up to 8 and to the waiting area then the patient room for the pain doc.

Pain doc wanted me to take off my left sock. Once I did, he wanted me to take off the right so he could compare (oooo....progress!!!). We then went over the same issue I hd explained to PT and psych. Increased pain since last week. He decides to increase my amitriptyline and explains this is a process. Okay. I'll bite.

Back to 2nd floor for OT. I love her. She recognized 20 minutes in a shoe was too much, so we are cutting it back from 20 minutes 3x/day to 5 minutes 5x/day. She also explained that I can "mind modify" my exercises from PT if they are too much.

Done at 2. Back to moms at 3:30. Daughter picked me up at 3:45 and I was home by right around 5.

I will keep at it but I won't push myself to a 10 because they insist on these exercises. That's crazy talk!

On the personal note: all of my out of state children arrived by 2:30am and are now with their grandfather for the evening. He is home with hospice in place. Time is relative.

I am so sorry to hear about everything you have been going through...it really sounds just awful. While I'm not saying you should give up on it just yet...if you get to the point where you KNOW it's not a good fit for you then don't feel bad admitting that and looking for another option. The crazy thing about treating this mnoster is that we all respond to different things. The program sounds great in theory...but if you don't feel that the people who are supposed to be helping and treating you are listening to you and addressing your concerns then that IS a problem.

Don't get me wrong...I am all for physical therapy and the benefits it has...but it's a careful balance and it is SO important to have a physical therapist that you trust. I ended up doing at home PT prescribed by my PCP...best move ever. I was able to conserve all the energy I would have used for travel and focus that on doing the therapy. We did a couple times a week and once she trusted that I could and would do the exercises on my own then we went to once every 2 weeks so we could stretch out the therapy so I wouldn't run out of covered visits. I can't tell you what a difference it made having someone who I trusted and who trusted me...and as a result I saw the best progress I ever had with PT.

Keep us updated on how everything is going...I am so sad hearing that the experience has been disappointing so far...I hope it gets better. Take care of yourself.

Honestly, I think if my baseline pain level was a 4-6, this would be an awesome program. My pain level is teetering a 7-9 going into this with zero medication (pills, creams, patches, etc.) for pain. Unless you count the night time amitriptyline. This leaves immobility as my only method of pain reduction. How does one expect a pain level 8-9 to reduce to a tolerable level if one is supposed to do PT with a beginning pain level of 8? Am I supposed to say "Ok. I know my pain is an 8 but I have therapy exercises to do." Nevermind those exercises take me to a 10. How does one justify to themselves they are willingly, forcibly putting themselves to an intolerable pain level?

Those were my questions today. I didn't seem to get any answers. No, at this point I do not think the PT is a good fit. I also question the pain psych as so far I have seen 2 different ones in 2 weeks. Pain doc is still up for review. OT is awesome. 3 hours (driving) or 4 hours (train + 2 hours wait time) round-trip just seems to add to the "where is this going" aspect. I have no problem with doing PT, IF I have some way to relieve the pain it puts me in. So far, it's only making my pain increase, which makes my function decrease.