Welcome to our new CRPS RSD website

Welcome friends.

My name is Carrie Brewer, and I have had RSD/CRPS since May 1996. It started in my left wrist and hand, but has since become systemic (body-wide).

I STARTED THIS SITE as a compliment to the facebook group that I run called "Chronic Regional Pain Syndrome (a.k.a. Reflex Sympathetic Dystrophy)". My co-admin for this group is Rhonda Perrett. (FYI, I have tried updating the name to COMPLEX, instead of CHRONIC, but FACEBOOK does not allow group names to be changed once a certain number of members have joined.)

To go to the facebook group, click on this link www.facebook.com/groups/CRPS.RSD/

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I also admin other facebook groups that are specifically for those dealing with RSD/CRPS.

One is for us to share pics and stories of our pets that help us deal with the everyday pain and disability related to our RSD/CRPS.

www.facebook.com/groups/PETS.CRPS/

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Complex Regional Pain Syndrome support group for Dutch speaking people

https://www.facebook.com/groups/crpsdutch/

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Another one is for sharing pics and stories of the children in our lives that help us to deal with RSD/CRPS. Whether they are our kids, grandkids, nieces/nephews, any kids who are in your life and an important part of helping you deal with all that is RSD/CRPS.

www.facebook.com/groups/FAMILY.CRPS/

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We also have a facebook group set up for family and friends of those who have RSD/CRPS, for them to gain support from each other. It is not only hard for the patient, it can be very hard on our friends and family, seeing what our disease does to us. I have my mother, Louella, and a good friend, Lucie, who help me with admin duties on this group. www.facebook.com/groups/family.of.crps.rsd/

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I have two other facebook groups that you may be interested in checking out.

The first one is called "PAINFREE ISLAND". I set up this facebook group as a way to use cognitive therapy to ease our pain. I designed this group, based on cognitive therapy. Cognitive therapy was developed in the 1960s as an alternative way to treat depression, and we now know that depression can cause pain...and increase chronic pain levels.

There is alot of science behind it...and we could get into it...or we could go swimming with the dolphins and enjoy a drink by the pool with the man or woman of your dreams! SPLASH! www.facebook.com/groups/painfreeisland/

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The second one is designed not only for those affected by RSD/CRPS, it is for anyone and everyone. This is a prayer request group, and can be found here www.facebook.com/groups/godisgoodpray/

I saw on a website, where they had taken each word in CRPS separately, explaining the meaning as it pertains to our condition. I have shortened their description, reworded a bit, but I still think this will be helpful to some. I wish someone had done this for me when I was newly diagnosed. It would have really helped.

What is Complex Regional Pain Syndrome?

Complex: Many different health problems have been identified in people with CRPS. These can be severe and usually involve many of our biological systems. This makes the situation complex.

Regional: Basically, CRPS is almost always confined to a particular region of the body. The arm or the leg is the most commonly involved region. Sometimes CRPS of one arm spreads to the leg on the same side of the body. Sometimes it spreads to the opposite arm, in which it usually ‘mirrors’ the other one.

Pain: CRPS is severely painful. Often the skin is too tender to touch and the whole limb is too painful to move.

Syndrome: Normally, the reason that something is called a syndrome is that we do not know what causes it, we just know that this pattern of symptoms occurs together and usually at the same time.

I added this part myself, hope it helps...

So, CRPS is multi-symptom disease, usually in one of the limbs, sometimes spreading to other areas of the body, including the torso, and internally. It causes severe pain, affects our immune system, and many functions of our nervous system, like skin, nails, hair growth, sweating regulation, swelling and blood flow. Also temperature and sensitivity of skin, bruising, skin lesions, slow healing, and so much more.

What can you find on this website?

This site will be a place to find the latest information available about RSD/CRPS. Think of it as a GATEWAY TO INFO. Instead of using a search engine and making your way through pages and pages of possible websites, I will provide you with links to all the sites that have RSD/CRPS related info, which I will update as I receive more information.

To do this right, I will need your help. Please send me links to any RSD/CRPS related site that you know of, that I do not yet have listed.

Complex Regional Pain Syndrome: Practical

Diagnostic and Treatment Guidelines,

4th Edition

https://www.rsds.org/pdfsall/CRPS-guidlines-4th-ed-2013-PM.pdf