Hola,

Wanted to share a couple of thoughts on things that helped me improve and the reasons why I think they did. Sorry if this reads kind of half pseudoscience/half subjective experience, but it's all I got

The current accepted, generally agreed upon consensus is that RSD is a neurological disease with tangible physical symptoms. This seems to be fairly commonly accepted on this board, and certainly in the medical community. Based on my own experience with RSD, I wanted to extrapolate a little bit on what this has meant for me.

Bear with me for a second while I put in a little bit of context to what neurological actually means, and quote some blasted Wikipedia:


Neurology: the branch of medicine dealing with disorders of the nervous system. (Neurology - Wikipedia, the free encyclopedia)

So what's the nervous system actually do? Well, it coordinates voluntary and involuntary actions and transmits signals to and from different parts of its body. (Nervous system - Wikipedia, the free encyclopedia.)

To sum up the current definition: RSD is a disorder of the nervous system which results in a variety of painful and debilitating symptoms.


For us humans, the nervous system is first and foremost the spinal cord and BRAIN, which passes signals to all parts of the body to keep things working (and in the case of RSD - to keep things NOT working.)

So, oddly speaking, several years ago I gradually came to the conclusion that RSD is LITERALLY in my head. After all, that's where my brain is, (the last time I checked.) AND... the brain is the control center of the nervous system. And unfortunately, my nervous system was on continuous high alert because my BRAIN kept sending pain signals to all parts of my body.

HOWEVER. The last thing anyone EVER wants to hear is "this is all in your head." It's demeaning, dismissive, and beneath it all - frightening. Many if not all of us have heard this exact comment from countless doctors over many years and even DECADES before even getting to the RSD diagnosis. I was "accused" that my "Type A" personality was the cause of RSD, even though it was triggered by surgery with no previous health issues.

Now for the ironic part - What if it IS true? What if RSD IS in our heads? Not in the context that anyone is sitting here consciously CAUSING THEIR OWN PAIN/RSD - that's ludicrous. But nonetheless, medical professionals are telling US, the patients, that RSD is a neurological disease. Perhaps that's why physicians (emphasis on physical) are having a very difficult time diagnosing and treating it(?) Hmph.

SO - I found that all kinds of CONSISTENTLY APPLIED brain stimulating and nervous system calming stuff like meditation, visualization, mirror therapy, self inquiry, being in nature, etc was helpful in improving the RSD symptoms I was experiencing. Because these things helped remap the wiring of the brain differently from its previous "all hands on deck fire fire fire" mentality. So, in scientific terms: the super awesome news I was applying is described as "Neuroplasticity." (Neuroplasticity - Wikipedia, the free encyclopedia)


But overall - so what? Neuroplasticity and meditation and mindfulness and visualization techniques yada yada yada - this is all stuff that has been discussed on here before and all over the internet. The general benefits of meditation and mindfulness have apparently been verified through scientific study. But why does it seem to be more effective for some people and not so much for others?


Well here was the kicker for me: Once I REALLY accepted that RSD WAS in my head - I mean really and truly and authentically didn't just THINK it but KNEW it after lots of personal experimentation - THAT gave me the power to change it.


Nothing happened all at once; not even close. I had to gradually convince myself through lots of "tricks." Two that were especially helpful to me (again these are not new, but I found them really helpful):

Trick 1 - I stopped calling my pain "my pain." Calling pain MY pain identifies it with ME. When I stopped calling it "my pain" and started referring to it is just "this pain" or "the pain," it depersonalized it, and made it more manageable.

Trick 2 - (for localized symptoms) Started pretending to love the affected limb. Talking to it. Massaging it. Breathing into it. Visualizing it doing athletic fun positive activities. Treating the friggin' thing like royalty. After all - it's just a temporarily attached object; not me.

What I found, subjectively speaking, is that my brain cannot and will not disassociate itself from something unless it actually KNOWS it can. That's why I wrote this post - maybe another brain or two could free up a little bit from digesting this. (?!)
(Or maybe I'm nuts)

Thanks you for sharing this. I don't think that you are nuts...the mind is a powerful thing. Many of these things have helped me. They don't take the pain completely away...but it does help...especially in terms of increasing function for me. Always appreciate any positive experiences that everyone shares because you never know what might be the thing that helps you and it's all worth a shot in an attempt to increase quality of life and maybe even remission if you're lucky.

Thank you for sharing this with us. I appreciate your post. You make me think, and question and that is a good thing. I was looking for your list of all the things you had tried, could not find it, was wondering if you would post it again, as I am looking to make my own list, new things to try, and old things too. I listened to my relaxation tape as I went to sleep last night, it is a trip to the beach, and woke up so peaceful this morning. The grocery store delivered a weeks worth of groceries this morning, I am so grateful for this service.

I had not realized how discouraged I had become, until I went to a new PCP and saw myself through her eyes. The RSD in my foot made the scoliosis and osteoporosis worse, as I leaned to one side, for months, as we all know everything is connected. It was a wake up call for me. I have been doing more, moving more since that visit, not listening to those discouraging thoughts.

My husband means well in not wanting me to get hurt, it is kind of a catch 22 though. I have been working in the garden today, as it is becoming over run with weeds, and he is doing nothing about it. I will pay for all this work tomorrow, but I will also be able to see that I made a difference, and the garden will not be so overwhelming. I can sit on the porch and moan and groan and SMILE too. A little ray of hope is worth so much.
:-)
peace
zinnia

I listened to my relaxation tape again last night and woke up so relaxed, peaceful, and there was no pain. The cool night air felt so good, I laid there and enjoyed it. I took a shower and washed my hair very mindfully, as I have to really think about getting in and out of the tub safely, there is a chair in the tub and a stool outside the tub so I do not have to step over, we have glass shower doors, and I do want to keep them. Mindfulness is a good thing. I am surprised I did not hurt from the work in the garden. I am taking it easy today. Doing some housework, resting in between chores.

I read a few daily devotional books each morning, and one of them this morning was talking about how important willingness is. It has stayed with me today, willingness. As I walked through the garden admiring what I had accomplished yesterday, I looked out at the street and realized the same distance I was slowly walking with my walking stick in the garden, which is necessary for the uneven ground, I could walk in the street without the stick move my arms and walk. The willingness served me well, I was surprised at how well I did, a little later I did the same distance in the other direction. The hip pain had taken over, wow now I can see that. A downward spiral. It is coming from by back. I will continue to do very short distances in the street. Thanks for listening my friends, I am so glad you are there.
peace
zinnia

Zinnia your posts always make me smile. The one above this especially! Honored to be a listener.

Found the old thread you were looking for: An Apology, and a List of Crap I Did to Cure RSD

Thank you so much Vision, it is an awesome list, I appreciate you sharing it with us. I will pick out a few and put them into practice. You have given me hope that my life can be better.

In the relaxation tape I am doing every night now and once during the day there is a part that says to picture yourself strong, healthy doing something you enjoy. I see myself as a child climbing trees, riding my bike, swimming, and running.

It amazes me that listening to someones voice is helping me relax and the pain melts away, the pain was so bad earlier today when I laid down to do it, and as he says on the tape the relaxation goes deeper every time.

I am glad you are here Vision thank you for shining your light on my path.
gratefully
zinnia