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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

An Apology, and a List of Crap I Did to Cure RSD

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Old 06-26-2014, 02:51 PM   #21
Imahotep
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Thanks for the thread. There are a few of those I haven't tried and am willing to.

I'm pretty sure this has to be kicked a little at a time starting with getting off the medication because I had it almost kicked once (40 to 60%).
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Old 06-26-2014, 03:53 PM   #22
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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) 14311438. 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.**
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.
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Old 06-27-2014, 12:40 AM   #23
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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.
I'm sure I am missing the bigger picture here but "white light" and "warmth" are not sounding necessarily inviting when my arm and hand are already on fire with flare-up related burning pain and hypesthesia....Am I missing something???
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Old 06-27-2014, 03:43 AM   #24
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I'm sure I am missing the bigger picture here but "white light" and "warmth" are not sounding necessarily inviting when my arm and hand are already on fire with flare-up related burning pain and hypesthesia....Am I missing something???
No; I wouldn't call it "inviting" either. That was simply the visualization of the healing process that I used intuitively, as a result of the negative connotations I had regarding ice and RSD. You could visualize "black darkness" and "coolness" if that is what you genuinely associate with healing. The focused repetitive intent is what matters.
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Old 06-27-2014, 09:44 AM   #25
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Thanks for the thread. There are a few of those I haven't tried and am willing to.

I'm pretty sure this has to be kicked a little at a time starting with getting off the medication because I had it almost kicked once (40 to 60%).
Hola Imahotep.

Just want to say I find your theory on a possible microbial link to be really intriguing. I am 100% positive that from a purely physical standpoint, we're looking at an autoimmue condition. So it would make sense that there could also be a primary microbial influence in some cases, as a result of an already compromised immune system. The fact that you noted improvement from antibiotics regimens in the past is strong anecdotal evidence of this.

And the vast majority of initial cases are related to specific physical trauma. Spread is a further example of this. These traumas aren't the direct cause; they're just physical "triggers."


For me personally, RSD was triggered by ankle surgery. Going into the surgery at the time I thought I was in great shape, doing all the right things. I know now for a fact that my immune system was already completely shot to h*ll well prior to the surgery.

I hope you are back to 2003 and beyond soon I'm no expert, but do believe that unraveling the ingrained pain "mapping" within the mind is the key for longer term sufferers. After all, you don't have RSD pain when you're dreaming...
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Old 10-16-2014, 12:16 PM   #26
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Default Question about choice to go off meds

[QUOTE=visioniosiv;1075620]

Hey Visioniosiv,

We seem to have a lot in common - namely that my instinct has always been that my body is capable of healing itself more than invasive procedures from docs (of which I've had plenty).

I'm currently at a crossroad - and I'd love a bit of insight based on your experience. I've been on Gabapentin for the last year, and quite frankly I'm not sure if it's doing anything. I got myself into remission last fall, then completely reflared and have been stuck cycling for awhile - so really what are the meds doing?

So now I have a choice. Either get myself off the damn chemicals affecting my brain, or attempt to add cymbalta while I'm currently on the gabapentin - since the combo can supposedly be helpful. I hate the idea of adding more meds, but a part of me thinks its logical to try the combo before completely giving up on medication.

Curious your reason for going off - and if you felt like they were actually stifling your body's own ability to heal.

Thanks!

-jamie
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Old 10-16-2014, 01:50 PM   #27
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[QUOTE=jamiedavis83;1103433]
Quote:
Originally Posted by visioniosiv View Post

Hey Visioniosiv,

We seem to have a lot in common - namely that my instinct has always been that my body is capable of healing itself more than invasive procedures from docs (of which I've had plenty).

I'm currently at a crossroad - and I'd love a bit of insight based on your experience. I've been on Gabapentin for the last year, and quite frankly I'm not sure if it's doing anything. I got myself into remission last fall, then completely reflared and have been stuck cycling for awhile - so really what are the meds doing?

So now I have a choice. Either get myself off the damn chemicals affecting my brain, or attempt to add cymbalta while I'm currently on the gabapentin - since the combo can supposedly be helpful. I hate the idea of adding more meds, but a part of me thinks its logical to try the combo before completely giving up on medication.

Curious your reason for going off - and if you felt like they were actually stifling your body's own ability to heal.

Thanks!

-jamie
Hi Jamie,

My overall reason for going off was because of the things I'd read and intuitively agreed with on long term use of narcotics and other drugs being detrimental to chronic pain sufferers. As far as drugs in general - yes - I wanted a clear head to monitor my progress without it being complicated by side effects. This is not to downplay the positive role they CAN play.

My intent for the drugs was to get me to a place where I could use windows of pain-reduced time for positive physical, mental, (and eventually spiritual) rehabilitation practices. I felt I was lucky for the opiates to have such a pain reducing effect, but also knew and directly experienced that it was temporary - I began to require more and more as my tolerance continued to build.

Besides that, I honestly just loved the high I got from opiates and could feel myself yearning for the next dosage. The pain was decreasing between dosages as a result of the healing regimen I was doing, so I gradually weaned off over about 2 weeks. Was not an easy decision to make or follow through on for me but I'm glad I did.

I was also on Gabapentin for just under a month. I never noticed any specific positive effects that I could attribute to it, and was already making significant improvement at that point with mirror therapy, massage, affirmations, and visualization imagery. But I wasn't sleeping at night, at all. I stopped the Gabapentin on a hunch and literally within 24 hours I was sleeping like a baby - no more insomnia. Who woulda thunk it - (apparently drowsiness is the typical side effect.) So that one was a simple decision for me Plus I had this weird unsettling vaguely "tight" feeling in my chest that I noticed immediately went away as soon as I went off as well.


As you know it's a very individual decision, and medications have drastically different effects on different people. Very much depends on where you are in your own recovery process. I do think our natural state is not to be dependent on synthesized chemicals; but again, quality of life needs to be taken into consideration also.

I do think this is your key sentence: "I hate the idea of adding more meds, but a part of me thinks its logical to try the combo before completely giving up on medication."

What caused your reflare and what is your overall condition like right now? Are you on anything else besides Gabapentin?
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Old 10-16-2014, 06:19 PM   #28
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o Conscious abdominal breathing during all physical activity.

Did you mean "normal breating"?
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Old 10-16-2014, 06:45 PM   #29
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o Conscious abdominal breathing during all physical activity.

Did you mean "normal breating"?
More like the type you learn in meditation or yoga, I believe.
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Old 10-16-2014, 07:12 PM   #30
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I surely hope you are cured....however, I must say, I have a skeleton in my closet. When I was 14 I had mysterious foot pain, swelling, etc after a surgery. I was studied by 17 drs in multiple hospitals they all concluded that desire my age I had RSD. I struggled well into my 20s. They'd try different treatments and meds.....at 18 I quit everythimg and was ****** cause nothing worked! When I was 23 it stopped....all of the pain and chaos gone. I have no idea why or what made it disappear. As I got older I became confident that I had been misdiagnosed....until this year. I am 38 and was diagnosed with a scaphoid non Union with avascular neurosis as a result of preizers disease. Post surgery the pain was unreal and haunting....here I sit with another RSD diagnosis. I would just be cautious as I don't believe it goes away forever.
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