Tuesday, June 18, 2013

Newly diagnosed with CRPS where do I go for information?

This is a question we get quite often at American RSDHope. Unfortunately it is a question that we also don't get often enough because they got answers themselves by going to various websites on the internet that purported themselves as "RSD" or "CRPS Informational websites".

Some of you are saying "Huh???"

Here is what I am saying.

There are two national non-profit organizations who have dedicated themselves for decades solely to helping RSD and now CRPS patients and their loved ones, as well as the Medical Community and the general public, better understand this horrific and extremely complicated disease; the American RSDHope Organization ( www.RSDHope.org ) ; and the RSDSA ( www.rsdsa.org ).

These two organizations, which often work together, have a ton of information on their websites dedicated solely to the disease of Complex Regional Pain Syndrome. They have it checked by physicians whose speciality is chronic pain, they work with physicians around the USA as well as other countries constantly to keep the information as up to date as possible. That is very, very important with CRPs because it is a very fast-moving disease. I don't mean the disease itself spreads quickly, I mean what we know about the disease has progressed rapidly over the last two decades, and even the last five years, especially.    

Many CRPS patients, most probably, seem to fit into what is known as the "Type A" personality category. That means they are very aggressive in their approach to life. They don't tend to be couch potatoes, they are much more likely to say, "Ok, I have what? RSD? CRP-what? Ok. never mind. I will find information on it myself", and off they go in a never-ending quest on the internet through all hours of the night in search of every last scrap of information they can find on the disease. They also tend to want to share EVERY SINGLE piece of it, every article and tidbit, with anyone who is within earshot or email range.  

Normally you would say, "What's wrong with that? We should educate ourselves about our disease right?"Yes. normally you should. But CRPS is special. And not in a Saturday Night Live Dana Carvey Church Lady "Isn't that Special?" sort of way. (any of you youngin's out there who don't recognize that gem need to google Dana Carvey's old Church lady bits.

I won't go into it too much because so many people have read and heard me rail on this subject many times and I don't want you tuning me out here. But the bottom line, quick and dirty; far too many websites out there have out of date or just plain wrong information on their websites in a bid to help their fellow patients deal with this disease.

They mean well, I know that. I don't want to discourage them from wanting to help, just do it in another way. For medical information please direct them to one of the two national CRPS organizations, we have to stay updated, we have people for that. If someone comes to your website for help and they read something on a website you wrote that is no longer true, or something you may have copied from another website that is out of date, etc. With this disease folks, using outdated information, performing the wrong treatment, or the right treatment at the wrong time (too soon in the diagnosis or too late) could really cause serious problems.

Perhaps you visit a website that talks about physical therapy. Seems harmless right? After all, it is very important to know how much you can move, or not right? So what do you do? Protect the affected limb? Put it in a boot? A cast? Swim? Walk on it to keep the ROM alive? Don't walk on it or the swelling will increase?

What about ice? Maybe ice it down to bring down the swelling? But others say NOOO , don't use ice? Which is it? The answer for ice is if you use ice on the CRPS-affected limb you can not only possibly accelerate the disease but you run the risk of making the disease spread as well. There also exists the possibility of sending the CRPS even more quickly through the first or second stage and into the third.                            

Shouldn't my Physical Therapist know what to do? The answer is yes but not all of them know the correct treatment for CRPS. Most do but some still have not become educated on the correct things to do, and what not to do. The information is all out there for the taking on both national websites, all they have to do is visit them. There are videos for the therapists to view and/or download, informational brochures, articles, and they can even talk directly to the people in either organizations office if they have any questions.

What about Doctors? What kind of Doctors treat this disease? Again, answers are right on both RSDHope's and the RSDSA's websites.

Signs? Symptoms? Treatments? Medications? Latest new therapies? Both websites and any questions you can call and/or email both organizations.

The reason I am writing this article AGAIN is from time to time I peruse the internet, when I am up late at night. Many CRPS/chronic pain patients suffer from insomnia, like myself. I google CRPS or versions of it and find websites and look for mistakes. Not for "aha moments! or "gotcha! moments", but in the hope that we can correct them and encourage them to instead simply have them send people to our website or the RSDSA's website. I am always saddened by the amount of incorrect information out there, oftentimes masquerading as medical fact on one news website or another.

I read one tonight that purported to be heavy on research on the brain and CRPS but it was chock full of inaccuracies. It didn't even have HOW people can get the disease right! Didn't even have the definitions of CRPS Type I and Type II correct ! It was even written, put together, in the last year.

It makes me angry, yes, because people can get hurt by reading and following the information contained in these websites. They can ruin people's lives, change them permanently!!!!  This is a bad enough disease as it is without hurting them after the fact with incorrect information regarding blocks, physical therapy, SSDisability, medications, and even Doctors.

Please everyone, if you are a CRPS patient, think you might be, have someone you love who is or might be, send them or go yourself to American RSDHope's website www.RSDHope.org  or the RSDSA's website  www.rsdsa.org  and get the correct information right off the bat.

CRPS Description, definition, stages, how is it diagnosed, differences between Type I and Type II, CRPS awareness, the national CRPS Awareness Ribbon, CRPS videos and audios, treatments, ketamine, HBOT, medications,  terminology, FAQ's,  SSDisability, Support groups, links, articles, info for loved ones, and so so much more.

any questions please always feel free to email me directly

peace to you all;


American RSDHope


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