|
What to do, what to do...
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.
|
Quote:
|
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. |
Quote:
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! :D). 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. :confused: 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, :hug: |
Quote:
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 |
Quote:
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:hug::hug::hug: |
Quote:
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 |
Quote:
|
Quote:
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
|
Quote:
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. |
Quote:
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. |
Quote:
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. :hug::hug::hug::hug::hug: |
Quote:
|
Update Week #2
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. |
Quote:
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. |
I'm so sorry to hear you are in so much pain. I was also involved in a push through the pain program, it ended up making my pain worse and the CRPS spread. To me they just don't have validity and are run by people who must think CRPS is primarily in your head. It also produced a lot of "I'm failing" feelings for me. When I started working with a PT that got it, we only pushed to the "hurts a lot" and then backed off, brought the pain down and then tried again. This worked tremendously for me.
I also believe being on the right meds is important. LDN was a game changer for me as well and Ketamine Infusions. I know this is easier said than done, especially when there are issues with insurance. Good luck and many healing vibes sent your way :hug: |
Quote:
Ahhhh...the meds...there is so much I have to say on this point which, sadly, continues to fall on deaf ears. PCP, ortho #3, neuro, PM #1 and now the current PM seem to all be focused on anything that is mainly used for long-term solutions (gabapentin, cymbalta, lyrica, amitriptyline, etc). I agree there are several medications that may achieve a much lower pain level on the long term. I am struggling with the short-term that is becoming long-term because no one is managing this properly. Insurance has only been an issue with who I can see. Unfortunately, those I can see don't want to do anything other than what I have already tried that hasn't worked (with the exception of the ONE med that HAS brought some level of relief, hydrocodone...not even a 'big bad' but they are all scared of it apparently) and absolutely nothing that's primary use is for pain...or a muscle relaxant...or anything really. On the F-I-L front...he passed without pain this evening with his wife, children and almost all of his grandchildren at his side...2 of his grandchildren were already there to meet him. |
Update Week #3
I'm not even sure I want to give this one more week. I am struggling to discover the difference between this program and your standard outpatient PT/OT.
PT seems to be of the belief that one should push through the pain during therapy. As I was struggling on one of the exercises she said "You aren't doing anything more than you do when you are walking around". My response: To be real, getting to/on the train, getting through the train station and getting to therapy is about as much walking as I do in a full day. I struggle to do the exercises when I'm sitting at an 8. But...during the pain psych session we did biofeedback relaxation exercise and I did an amazing job. Funny....I was still in hella pain. Apparently I don't have enough positive thinking going on. Doc has me on amitriptyline. Awesome. Good to know when my pain is pushed to a 9 or 10 from all this that I can take an amitriptyline to bring my pain level down. SMDH Besides being an emotional week (my former father-in-law passed & was buried Wednesday, we had to put my dog down last night) I am feeling like there is no relief in sight through this program. I think I am going to change PCP's and see if I can get into the PM doc closer to home and get PT/OT closer to home as well. |
You are the only one that can say if this is the right program for you. Maybe it's time to explore other options and then make a decision what is the best treatment for you at this time. It also sounds like you have been under additional stress with 2 deaths in the family. That will raise your pain level and make it more difficult to cope. You might keep that in mind as you are trying to make decisions. I love the endings to your posts, "Believe in the Strengh of Faith and Hope, within there is Peace and Love" Wishing you strength, faith, hope, peace and love~mac:Heart:
|
Quote:
I think I need to change PCP regardless, that's probably where I will start. I will give it another week at least. I know the beginning is the hardest but if I saw even a hint of something this program has vs standard PT/OT I might feel differently. I don't believe "pain management" should put you in MORE pain...and then tell you to "visualize yourself without pain" as the solution. Thank you :) I have a word for each of my children and myself (Me: Believe; Son #1: Faith; Son #2: Love; Son #3: Hope; Daughter #1: Strength; Daughter #2: Peace). They are based on the core soul of everyone. I wanted a way to mention them all in one statement...therefore: "Believe in the Strength of Faith and Hope, within there is Peace and Love". I added "always" in honor of my angel son. |
Wow! That is such a wonderful line. It brought a tear to my eye. Thank you for sharing that with us.
|
I'm with Purple Foot, that IS a beautiful line. I don't know if I knew the whole story on that. Thank you for sharing it. :heartthrob:
I'm sorry you have had such a terrible and stressful week. There is nothing I can say to make that better but know that you are cared for and thought of. I'm sure the stress has made your pain worse. Doing a marathon every time you go to your "pain" program doesn't help either. It sounds like the cost to you of doing the program may be too high and your efforts better spent on exercises closer to home. Give yourself credit for making a valiant effort if you decide to do something else. I support you no matter what. Have a better week and take care of you. Sending loads of hugs, :circlelove: |
| All times are GMT -5. The time now is 11:12 PM. |
Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.
vBulletin Optimisation provided by
vB Optimise (Lite) -
vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.