I had my first official day in the RIC pain program. Boy oh boy.

My mom went with me. We left her house at 7:30am, after parking (& me popping out for a quick smoke), we went to the 8th floor to get my schedule.

1st appointment was PT (2nd floor). Did a bit of range and cortical disinihibition. He sent me home with a 'results' sheet & instructions to perform it twice a day on each leg.

2nd appointment was psychology (8th floor). Discussed sleeping habits, how pain has affected my mood. Homework was to read specific chapter in the book I received with my schedule.

Lunch break. We were told we could sit on the 6th floor. As we were finishing up, someone came in & told us we could not sit there, it was an employee floor.

3rd appointment was with pain doc (8th floor). Got up, called back, vitals taken. Doc pokes his head in & says he was running late. Asked if I could go to my next appointment & return after.

4th appointment was OT (2nd floor). 2 assignments: 1) "Love Rub" on my foot. 2) Wear a shoe on my foot for 20 min 3 times/day

Back to pain doc (8th floor). Said he was thinking of trying trazadone for sleep but decided to (re)try amitriptyline. Started low, will increase next week.

Arrived back at my parents at 4:30pm. Took a few steps inside and my knee was hurting so bad I could not bear weight without excruciating pain. I sat on my walker & my dad pulled me around the house.

One of the things that was mentioned is that my "brain" is conditioned to"think" my foot is cold because I wear a sock (and leg warmer as the cold travels up). Because we need to re-train my brain since "the injury is healed" (ummm....no...I have permanent damage to 2 nerves in my leg. "Did you have an EMG?" Yep. Two of them).

My mom was showing my daughter how to do the dysinhibition thing...I asked her if it was just me, or did my leg look swollen. She didn't think it did. I rolled up the pants on my other leg & put them side by side. She said "Oh my! That IS swollen, and a bit purple looking!" My foot did not feel cool to touch, which was good. But....when I go home, I pulled out the infrared thermometer. Right foot = 97.5 degrees. Left foot = "Lo" (per the instructions "Lo" means it's out of the low range. Low temp range starts at 90 degrees).

Here's where the difficulty really begins:
My daughter is not very helpful with much of anything. Unless I specifically tell her (like she's 3) to do the dysinhibition test, it won't get done and even then, I might need to get upset before it gets done.
My left foot is still too swollen to put the shoe on, let alone give it a "love rub".

I don't have a good feeling about this. I feel like I went through 10 hours of uncomfortable positions, listened to therapists tell me it's in my mind and I have to develop a better relationship with my leg that resulted in not being able to walk....which I am sure I could take an amitriptyline and my pain would lessen (sarcasm) for nothing and only to push myself through more pain during the week to do it all over again.

If you were in this program, how far along would you go? Where would you draw the line at 'this is hurting more than helping'? Would you push through the pain & do the exercises? Would you tell them you did, if you didn't?

Pushing through the pain did not help me. After trying that for months I believed my life was doomed to be spent shivering under an electric blanket with a heating pad on my foot. LDN was the game changer, followed by pool therapy. The Bowen Technique removed excess fluid. Do whatever you can to get LDN.

Thanks Bio. Unfortunately, my doctors (not a single one for the past year) takes kindly to medication suggestions. Clearly, I am struggling with a pain level 7-9 on a daily basis and the only thing they are doing is amitriptyline.

To be honest, they sound like they are pushing you a little to hard. There does not seem to be enough communication between therapists, doctors, nurses, assistants... and patients. I can understand pushing a little to get through short gains and goals 1 day at a time, but having that amount of swelling on the first day sounds like it would be more of a setback. I would try talking with the members of your rehabilitation team to make sure they realize that you can't handle all of what they are asking you to do without serious setbacks.

I know it was difficult for you to get into the program, and only got in because of a last minute cancellation. If they continue to push you beyond your limits and don't want to listen to your needs, are you able to go someplace else that may go at a pace you are more comfortable with? A place that will listen to you. It's your body. Nobody knows it better than you. If you feel you are being pushed to hard, make sure they know it and slow down to your pace.

The whole way home my mom kept saying "I can't believe they can't have this all on one floor. I mean, everyone that comes is in pain and they have you all over the place!"

I was actually just talking with my daughter about that tonight (incidentally, my mother called my daughter to make sure she was doing the dysinhibition exercises - and I only missed ONE tonight! ). The OT gave me a pain pyramid and told me they want me to stay in the green. If I get in the yellow too much, they will have to re-adjust the plan. Well...I've been in yellow/red since getting home. If I'm at an 8, I sure as hell will not be doing anything that has the potential to take me to a 9 or 10. (And, as it happened, something shot through my knee tonight putting my leg warmer on that put me in tears - my 10).

I think they need to try a little harder to get my pain to a more manageable level before they can add even the smallest of exercises. The dysinhibition doesn't seem to bother me much, so that will continue, but my foot was too swollen to put on the shoe and I sure was not going to rub on an already swollen, cold, hurting foot.

I will try again tomorrow. I am not giving up but I can't push further than I already am.

Thank you for seeing what I see purple

This sounds like it was exhausting! It's a shame you have to go all over the place. I too am a bit concerned about how they are pushing you. It seemed like for me pushing too hard just caused me to backslide and I kept having to re-approach rehab a little more gently.

If it were me I would probably give it three tries before judging. You definitely have to get them trained! These people don't know you and aren't familiar with your injury. Nerve injury IS different than non-nerve injury and that needs to be taken into account. I personally think it's hooey that your foot is colder because it's trained to be cooler. My Physical medicine doc said that even without CRPS my foot might be cooler the rest of my life just from the nerve injury. That's what happens sometimes.

I do think there is benefit to trying so long as you can find some balance with the program. Even with a nerve injury you can do some re-training and that may help you. I wouldn't tell them you're doing exercises that you aren't. They need to know exactly how you are responding so they can adjust your treatment plan. Take pictures of your foot if you need to.

I hope the amitriptyline helps this time. I got relief from nortriptyline in about two weeks and it helped me sleep better. The sleep aid alone helped me have less pain. Nortrip is a metabolite of amitrip and has less side effects if those are too bothersome.

Can you try a half size larger on your shoe? I had to do that for a long time...

I hope you get relief soon!
Sending hugs and healing love,

Thank you LP!

With the pain pyramid, if I go 1-2 pain levels up, that's okay. My problem is that I have been sitting between an 8-10 since I left the clinic. I've been a solid 6-8 since the beginning of December (with the exception of immediately when I wake up...pain increases the moment I get out of bed).

I have always been under the understanding that the nerve injury aspect requires a slightly different approach as well. When you can feel the temperature difference and an infrared thermometer reads several degree difference, I would say that is not my mind. I am troubled by all the implications...how it sounds like I should be able to "think" the pain away.

Even though I was on the amitriptyline before, I am willing to give it another go. My biggest concern is the weight gain. I know it sounds vain, but there's a medical reason...I am 5'1-1/2". I have already gained 40+ pounds with this and we are dealing with a weight bearing joint. If it was my arm, I would have less of an aversion to the weight gain side-effects. I'm hoping to avoid the weight gain with the amitrip this time around.

I am going to give it a few weeks. I'm struggling with getting the 'homework' done because of the pain/swelling. I feel it's better to let them know the positives and negatives of all of this or none of it will do any good. I just don't think they get how much pain I am in because I am pretty damn good at pushing through it. But I have barely been able to walk since getting home. Maybe I need to adjust my pain scale...lol

I have read that it is not uncommon for patients with CRPS to change their pain scale. We eventually get used to some mild to moderate pain. What would normally be a 3 for us is quite often a 6-7 for others. Some PM centers have been using a 0-15 scale for CRPS patients instead of the 0-10 scale that is more commonly used. I do not know if this is still common or not, but it is something that I came across at one point or another.

I can't say that I have ever heard of the pain pyramid, so I do not know how it applies to what I wrote above.

I hope things are going better for you today. Healing hugs

For starters, I neglected to answer LP's question about the shoe size. The only shoes I can wear are 1/2 size bigger than normal. It's pretty loose on my right foot & snug (before increased swelling) on my left.

Since I don't know how to post a pic, I'm writing out what is on the pain (activity) pyramid. I'm going from bottom of the pyramid to the top

Tolerance For My Condition (bottom of pyramid)
Behavior : "Safe and sore"
1. Pain spikes during the activity no >1-2 levels above my baseline pain.
2. Pain NO worse in 12-24 hours.
3. No significant change in range of motion OR strength of painful limb(s) or body segment
Upgrade PLAN: Increase by 1-10%
GREEN LIGHT - NO HARM

Flare up/Inflammation (next level up/middle level of pyramid)
Behavior: "Too much, too fast"
1. Pain spikes during the activity >2 levels above my baseline
2. Pain persists after activity for 12-24 hours
3. No significant change in range of motion OR strength of painful limb(s) or body segment
Downgrade PLAN: Assessment of context, body position, tension, intervals
YELLOW LIGHT - NO HARM

Injury (top level of pyramid)
Behavior:
1. Severe spike in pain that stops you from performing the activity
2. Pain persists for more than 3 days to weeks
3. CHANGE in range of motion or strength (ability)
Plan: May need to consult health care provider
RED LIGHT - STOP

Interesting. Did you happen to ask if there was a purposeful intended goal for their use of the Pyramid scale? Or why they prefer to use the pyramid over the general 1-10 scale? I'd be curious to learn.