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Old 08-05-2014, 11:50 AM
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Quote:
Originally Posted by cdwall View Post
Vrae, I hope you don't think I was offended by you or your posting of the article. Not at all. I think all credible information is useful and worthy of reading and incorporating into our minds to try to make sense of this disease and what might help in each personal case.

I was simply expressing my view on the overall theme of the article. There was good information in there. I just feel for all those I read about on forums who've been told this is in their minds and haven't gotten the care they needed. I'm luckily not one of those people, probably because I had fairly dramatic physical proof and they kept at it until they found what was wrong. I just get so upset to read of others who've been made to feel like it's their fault or in their minds and not had the care they should've gotten early on. So maybe I over-reacted but I still thought the overall tone was a bit dismissive. Sorry.
Hola CDWall. I'd also like to accept a portion of the responsibility for any perceived dissension in this thread by the trend-setting of my first over the top response to Vrae's original posting. Although you and Vrae have already provided clarity at this point that there isn't much dissension, just an eloquent expression of individual viewpoints.

As individual viewpoints go, in my own personal experience, the medical field in general is simply behind the 8-ball. And "formalized" research, due to preferential funding by government entities and pharmaceutical companies, is highly restricted in what it can and cannot address. Can I "prove" this? No. But logical analysis points me to this conclusion. And to me, this conclusion is all the more disturbing within a culture where medical professionals are often put on pedestals - after all, that's what they're PAID to do! Heal us!!

When I first realized I was dealing with RSD/CRPS, I was fortunate as well. I had two medical professionals within my extended family I was able to talk to for both support and further conceptualization. At the same time, I scoured thousands upon thousands of abstracts and articles. I had two apps on my iPhone - Medline and Medscape - and I buried my face in it for months. The single largest commonality over everything I read... was that CRPS/RSD is "not currently understood."

From what I researched and what I experienced going to several specialist centers including a teaching hospital, the initial treatment for RSD/CRPS is essentially a) drugs b) nerve blocks c) referrals for some kind of physical/occupational/counseling therapy. And granted - all of these CAN be of benefit in addressing the symptoms! For example, narcotics had an impact early on for me so I used that window of reduced pain for further personal experimentation and research. My mind and spirit could have been out of commission without that brief window.

But at that point, I felt Google and personal experimentation was the only choice I had left. Because of that same lack of needed care that you're referring to, CDWall, people are backed into a corner. It's awful - it feels like there's no one you can trust, not even yourself.

From there I focused my research on individual case studies and anecdotes from people who had managed to transcend chronic and "incurable" diseases. I was also fortunate to have come across several individuals who had fully recovered from RSD/CRPS, and incorporated their thoughts and comments into my own healing regimen.

My intent in this personal anecdote is just to highlight the fact that I'm NOT a touchy feely person by nature. I'm a test and repeat SHOW ME THE EVIDENCE type of person. I'd change one or two variables at a time and give the results time to manifest before full evaluation on any benefit or lack thereof. I was openminded because I had to be - because whether it was my fault or not, the fact was that everything I'd lived up to that point had brought me to this thing called the "suicide disease."

Science in and of itself is awesome! At it's pure level, it's the study of cause and effect. My issue with the current version accepted by the general public is that, in following the cause and effect trail, it is evident to me that the information is either withheld or distorted.

That is why articles like these (while admittedly somewhat shallow and SHORT on any actual methodology) get me revved up - because they're one step closer to the Big Picture. So I'm sorry too.

But the discussion is good - thank you guys.
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"Thanks for this!" says:
cdwall (08-05-2014), eevo61 (08-05-2014), Phaedra (08-05-2014), Vrae (08-05-2014)