Quote:
Originally Posted by firewalker
You are so inspiring! Thank you so very much for taking the time to detail your therapy protocol. It is very helpful as I have done a lot of the same work, but have had some difficulty figuring out how much time to spend on different modalities and when to try to progress to new things. You've given me some motivation to retry some things in different ways.
You are the 3rd adult I know (of) who has cured themselves from CRPS. One person was bedridden for a year with disabling pain, so it can be done. I have had it for more than 2.5 years following a foot/ankle injury. About a year ago, I was back to sleeping with my left foot dangling uncovered off my bed and using a wheelchair to navigate the grocery store after the trauma of losing my leisure time activities, my job, my career and then my disability income.
I am now to the point where I can exercise standing for 45 minutes (it hurts, but I can deal with it), grocery shop without assistance and go for short walks with resting. I still have a long way to go because I want to go back to something closer to my old life. I still have a lot of areas where I get stuck, particularly with the anger with myself for letting this happen to me and not being able to pull myself out of it. I am still a work in progress...
Anyway, here are some other **programs that I have found most helpful that I have not seen highlighted so much-**
NOI Group: They have published a couple of books that are useful in explaining the brain's rewiring in chronic pain, neuroplasticity and graded motor imagery. ** They also describe mirror therapy as well.
Neuroplastix: Drs. Moskowitz and Golden believe they can cure all chronic pain and eventually taper people off all medications. ** They talk about flooding the brain with other sensations/experiences as it has been overtaken by the pain. They give courses for practitioners (I went this year) that are open to patients, but they don't occur that often. Their workbook of the same title seems overpriced and doesn't have as much practical information as the book I'll mention below. It is pretty new, however, and I suspect it will improve with further revisions. Reasonable purchase if you have unlimited resources.
The Dialectical Behavior Therapy Skills Workbook by McKay, Wood and Brantley. My understanding is that it was initially developed for people with borderline personality disorder, however, the program has many other applications. It is inexpensive and has many exercises/examples of how to cope with and distract from 'overwhelming experiences' (substitute pain here).
Safety of "pain exposure physical therapy" in CRPS Type I, PAIN 152 (2011) 1431–1438. Demonstrates the safety and improvement in pain that people can have with PT, although some people did flare early on. Personally, I did not taper off my meds while increasing my PT (I never stopped my PT after my injury), and would certainly use a good PT to help develop your program.**
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Thanks Firewalker! That name is flat out awesome.
Really appreciate you sharing here. Ran into the same lack of linking privileges when I first joined as well. Think some language rules were broken as well.
Great links and they are still Googleable for anyone drawn to
I read through the Neuroplastix site but haven't been through the other two yet. Although NOI group and McKay Wood & Brantley both ring a bell and I think I've come across their work before.
Forgive me for generalizing, but to me, the key is
retraining the mind. A lot of the crap I listed is exactly that - CRAP - if the mind isn't on board. All of the stuff I did, I did in order to change how I thought.
The mind is what is creating the distortion which causes the pain. It doesn't mean the pain's not real. It doesn't mean "it's all in your head." Not in the way most people take it. But it's Grand Central Station up there above our necks...
"I have had it for more than 2.5 years following a foot/ankle injury. About a year ago, I was back to sleeping with my left foot dangling uncovered off my bed and using a wheelchair to navigate the grocery store after the trauma of losing my leisure time activities, my job, my career and then my disability income.
I am now to the point where I can exercise standing for 45 minutes (it hurts, but I can deal with it), grocery shop without assistance and go for short walks with resting. I still have a long way to go because I want to go back to something closer to my old life. I still have a lot of areas where I get stuck, particularly with the anger with myself for letting this happen to me and not being able to pull myself out of it. I am still a work in progress..."
Wow - it's obvious that you're really making big strides. Especially by your objective self-awareness of where you are within that "work in progress." It feels to me like you're becoming more and more an "observer" of not just the pain, but everything else
I totally empathize with the desire to go back to something closer to your old life. That's what I wanted too - I couldn't wait to do all the things I missed most. It was part of what drove me to heal. Now that I am actually better, my "old self" is totally gone. I have no idea who I am anymore. And that's totally cool by me
Agree on the PT aspect, especially on the potential for flares. The general consensus on this site, which I totally agree with, is that there is a very fine and highly individualized line between
not doing and
overdoing. In the early phases of reintroduction of basic movement, the additional bloodflow from anything beyond very mild exercise stimulates not only the healing process but also the flow of free radicals throughout the body. For this reason, I believe that low stress, repetitive, natural movement is crucial - with intensity, ROM, and frequency gradually increasing over time as tolerated.
I incorporated ALL of my initial PT with mirror therapy. Couldn't bear any weight on my leg initially, so I killed two birds with one stone and did all ROM exercises staring at my good leg in a mirror for 10 minutes every hour on the hour. Now that I think about it, there was actually a third dead bird in the form of self massage and desensitivisation (is that a word?) for 5 minutes after that. Same thing - looking in the mirror at my good leg while massaging the RSD one behind it. It was weird and a bit "clunky" at first mirroring the hands simultaneously but it really calmed my mind enough to let me make progress that I could not have otherwise.
Applying the DMSO solution is another good example of "consolidation" - I would massage it into the RSD area for several minutes while simultaneously visualizing healing white light reconnecting all the frayed nerves and bathing it in gentle warmth.
Keep walking your path Firewalker. You can unravel anything with enough of the right frequency
Oh yeah! -One thing I might add that isn't talked about as much specifically as a
catalyst for healing - is service to others. That's why this place is special. It feels like people are here more to support others than themselves.