Originally Posted by AndreadePalma

Hello to my new circle of fellow CRPS sufferers and all the folks who care about them.

I started reading this site after an orthopedic doctor suspected CRPS and referred me out - only joining after my diagnosis was confirmed. It has become a great source of support for me and I'm very impressed by the wealth of knowledge and experience everyone has. It's also evident that most of us are living laboratories trying various medical treatments and still spend mountains of personal energy exploring other avenues driven by pain and our desire for a better life.

It occurred to me that our personal research of NON-MEDICAL treatments should be collected, by us, for the purpose of helping ourselves and those who are yet to be diagnosed. This clearinghouse could also be very valuable to the growing field of "Integrated Medicine". Anyone who is familiar with Complementary or Alternative medicine knows that when the model changes, new patterns of valuable information emerge.

What I had in mind was to develop a website for people with diagnosed cases of CRPS to share in VOLUNTARY group research. For example, if one of us was helped by a type of hypnosis and curious to know if it could help others, they could post an open research project for anyone who would like to try that therapy and is willing to share the results and answer questions about their experience. Other examples could be . . . What types of massage therapy have you tried and what styles offer relief and what types cause a flare of symptoms? Does using aromatherapy for emotions also improve circulation? These are just examples - it's a community project. We alone decide what questions we ask and each of us chooses what we want to try and what we don't. If 3 people want to try one thing and 15 people don't, then the 3 interested people can try it and report their experience on the site for all to read. If 3 people have a positive experience, then others may choose to give it a go or not. Everyone uses their own judgment and intuition in these decisions.

The prevailing scientific model is used to prove or disprove a hypothesis. That's purposeful to a point but we can see how far that style of research has advanced our cause. What I'm suggesting is that we collect data that isn't designed to prove or disprove any hypothesis but rather to report subjective findings based on OUR experiences(s). If enough people participate over time, the data we collect could be used by various learning institutions to improve on CRPS outcomes and quality of life for so many people.

I've looked high and low and haven't seen anything like this already in place. Nor do I have any experience in building a website but if there's interest I would begin to gather the tools to make it happen. Heaven knows I need something purposeful to spend my time on since my career ended with my diagnosis.

What are your thoughts, fellow travelers?