[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?

[moosey2me]

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?

I truly like your way of thinking.I hope you will be able to reach your goal..Good luck,we all are here..

[Vrae]

Hi Andrea, I like your idea a LOT! In my opinion traditional medicine is failing all of us miserably. What you are speaking to is desperately needed and could be greatly beneficial to many.

My husband and I have designed and developed many websites, but I am struggling to finish a last video project right now to wind down our business. My husband is the other half in this (literally). I design the sites, he implements. But he’s in school right now for programming, and his time is so limited between work, school and home. Not sure I’m up to all that comes with developing a site right now, but perhaps I could offer some sort of help in late spring, early summer, if help is still needed then. My body just hates winter, and it has been a brutal one.

There are lots of free tools available to get you going. If you have hostgator host your site, they offer templates that might be enough to get you going. Their hosting rates are reasonable.

I think you’re on to something FANTASTIC! I hope you’ll move forward and do it! Go you!

[PamelaJune]

I suffer from chronic pain and have done since a young child and I don't have CRPS. My heart bleeds for all that you go through.

Pain is gruelling and all consuming. To have a forum that is threaded with thoughts and activities that will help pain sufferers, well, it's just exciting to believe everyone from across the globe can pull together for one another.

I read an article from a thread posted by zookester this morning and it refers to activities young sports people have participated in with the aim of further gaining relief. I cried reading that article. I was a junior state champion athlete but I don't think my pain levels ever reached (in those days) a place where I would willingly stick my hand into a dry substance of raw barley, rice and fine sand and rotate it through for 20 minutes or more to stimulate the nerves. The author noted some cried and some even vomited. No doubt the same thought process that is applied with exfoliating burnt skin. I still feel ill to think that in our lifetime we have willingly submitted ourselves to such purposes in an aim to find relief.

[DocJohn]

There are indeed websites that track what works for different people that include non-medical treatments. One of them is called curetogether.com and if you log in there, and type in complex regional pain you'll see a few people have added what works and what doesn't for them (under "Treatments").

If more people used that site, then I'd think you'd get more useful information out of it. No need to reinvent the wheel... I think patientslikeme.com does this too, but not for CRPS.

Best,
DocJohn

[AndreadePalma]

Originally Posted by DocJohn

There are indeed websites that track what works for different people that include non-medical treatments. One of them is called curetogether.com and if you log in there, and type in complex regional pain you'll see a few people have added what works and what doesn't for them (under "Treatments").

If more people used that site, then I'd think you'd get more useful information out of it. No need to reinvent the wheel... I think patientslikeme.com does this too, but not for CRPS.

Best,
DocJohn

Thanks Doc!

I had a chance to look at those sites and while they were interesting, they were nothing at all like the detailed, subjective reporting, community driven research I'm proposing. I always find it helpful to look at what others have done to help me clarify my vision and so muchas gracias.

[AndreadePalma]

Originally Posted by Vrae

Hi Andrea, I like your idea a LOT! In my opinion traditional medicine is failing all of us miserably. What you are speaking to is desperately needed and could be greatly beneficial to many.

My husband and I have designed and developed many websites, but I am struggling to finish a last video project right now to wind down our business. My husband is the other half in this (literally). I design the sites, he implements. But he’s in school right now for programming, and his time is so limited between work, school and home. Not sure I’m up to all that comes with developing a site right now, but perhaps I could offer some sort of help in late spring, early summer, if help is still needed then. My body just hates winter, and it has been a brutal one.

There are lots of free tools available to get you going. If you have hostgator host your site, they offer templates that might be enough to get you going. Their hosting rates are reasonable.

I think you’re on to something FANTASTIC! I hope you’ll move forward and do it! Go you!

Thank you so much for that great information. I'm not sure what pace I can move on this but would you be willing to be a general resource for me (like you just were with the host recommendation)? Would you be willing to send me your email or whathaveyou so we can stay in touch?

This winter is kicking my ***** and I'm just in the early stages. I can also appreciate that any optional activity that's stress provoking is out of the question (for you or me or anyone with CRPS). So as excited as I am about this idea, I expect it to follow a very different timeline than pre-CRPS projects. But hey, it should be by us, for us and so on - with full recognition of and compassion for what we're all dealing with.

[heatherg23]

I don't do any non medical treatments. There's not much I can do for the pain except take pain meds. BUT I'd be interested to see what other's have done.

Heather

[AndreadePalma]

Originally Posted by heatherg23

I don't do any non medical treatments. There's not much I can do for the pain except take pain meds. BUT I'd be interested to see what other's have done.

Heather

Perfect Heather. I can't wait to start collecting data! I'll keep this group updated with progress.

As for your participation, make note of the things that aren't part of your medical treatment but that you've noticed have an impact. Example: I had crazy swelling in my hands for a couple days and my husband brought me yellow curry for dinner. The swelling in my hands decreased very quickly after eating and hasn't returned to that level of inflammation again as of this post. My guess is that it was the turmeric in the curry. But I don't know and I don't take herbs as supplements without full due diligence which I haven't done and probably won't because herbs don't interest me enough to pursue it. I may choose yellow curry off the menu more frequently though. If you have any of these kinds of self observations, please consider them important enough to note since we'll be looking for connections that could lead to a better life for us and our comrades.

[Hana]

i just had an ayervedic massage that had Arnica Oil in in it...and pain diminished by about 60% for the day, but not the sciatica. It is possible to use topical gel too. It helps with sprain feelings, bruises,cramps in muscles. I don't rub it directly on my most tender skin.
At least some regular exercise and yoga is helping me more than PT-- truthfully I am learning better how to breathe oxygen into those squeezed...(VISE-GRIPPED) tissues and I don't do the other exercises! lol At the moment that's about all I have...

peaceful evening,

Hana