I could say I was in "remission" from death - does that make me any less alive?[/QUOTE]

Point taken, but with all due respect for your extremely positive input here
(it does offer up so much hope) HOW IN THE WORLD did you have time to do all of that? Was the "cure" gradual or did it happen suddenly after doing all those things for a time?

Thanks Di. Those are really good questions.

I didn't do all of these things at once. The regimen constantly evolved. It's the reason I called the outline "Dynamic Adjustment." Since it's a summary off ALL the things I did, I couldn't see a way to quantify what I did when, for how long, and how they overlapped. I could, however, specify what I think was most important now based on hindsight.

I was blessed by the fact that I had hundreds of sick days built up as a result of a 10+ year career at the same company. And a sympathetic boss. And a loving family that let me get as weird as I needed to be.

I will say that I was absolutely 100% obsessed with healing and it consumed the majority of my waking thoughts. It still does.

The most important "cure," ironically, did happen all at once. I woke up at 3:30am one morning to discover that my whole leg was "mine" again. The pain was completely gone and has never returned. Took a picture of it with the flash of my iPhone in the dark. I still had residual symptoms after that, but they were much less intense and resolved over the next 6 months.

I'd be more than happy and honored to go into more detail on any specifics on the Why and When and Where and How versus just the What. Absolutely anything I can do to help.

Just have to say...:D

No one can be 'in remission from death' lol, as no one has been dead and then not been dead! The point is that you had CRPS, but now your symptoms have resolved. My point is just that I believe 'cure' is a strong word. We are all searching for a cure, and your list, while very helpful and interesting, is the kind of list that any one of us with intense CRPS symptoms might try to follow and still not find the results you have...

I'm not saying its not useful - it definitely is - but a cure is a treatment/s for a condition that works on anyone with that condition. I suppose I'm trying to say that there's a lot of desperate folk hoping for a cure....

Wishing us all a cure one day :grouphug:

Bram.

When I was first diagnosed with rsd, I asked my pm dr if it was curable. He said yes. I was so happy to hear this! Then I went home and did some research on rsd to educate myself on it. I found nothing saying that rsd was curable. I only saw that it could go into remission. So I went back to my pm dr and asked why he said rsd was curable when everything I read said the contrary. He said that if someone has rsd and then goes into remission until they die, then it's the same thing as being cured. Needless to say, I don't see this pm dr anymore. I don't believe he was honest with me and I don't trust him because of this. If rsd goes into remission until I die, it does not mean it is cured. It means it went into remission until I died. To me there is a big difference and I just needed to express my point of view on this subject. I do appreciate you trying to help offer your point of view on this thread though vision. I know you're just trying to help. Thanks.

Hola Renee. :)

Point taken - we all have different perspectives and I totally respect that viewpoint.

For me at least, it was very important to make the distinction between remission and full recovery. For me, even the act of thinking about recovery in terms of "remission" rather than being fully cured carried with it a fear of future outcomes. In fact, to help train my subconscious, I carried about all day long with the mantra "I am already healed - act like it" in my head on repeat. Words - spoken and unspoken - are vibrations that have power whether we are aware of it or not.

But yeah - Obviously I'm still working on that awareness part! In particular, the word "cure" has a lot of loaded meaning relative to the context of this forum that I could've been more cognizant of. It would be nice to be able to change the title of this thread to "The Crap I Did to Fully Recover from RSD." Or just "Things I Did to Fully Recover from RSD." But keeping my sense of humor was one of the things that helped me personally, so CRAP it remains:)

Thanks for your input it always makes me think:)

Are you sure about that?:eek:

Anyways Bram you know how much I respect you and all the light you bring to the people here:) A discourse on the nature of life and death isn't my intention.:rolleyes:

Your post is spot on by the way, and I intended to address it in responding to Renee's post above.

Hi again Vision. I like the title of your thread. It made me laugh and a sense of humor is always good to have especially when one has something like rsd to have to live with every day. Thanks for your list of things that helped you. I will have to try some of them. It can't hurt. Take care my friend. From your friend, Renee.

Yes, I am! :winky: And good plan not to go down the discourse route lol...

Bram.

Yeah yeah you know me pretty well by now:D

At least dis-course was an appropriate word....

If all I can really do here is serve as a beacon of positivity and potential I'll accept that:)

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.**