RSD(S)-CRPS Advisory Info & Support Group

CRPS Advisory LogoSupport Groups are necessary for those who need understanding and comfort when dealing with chronic illnesses other’s don’t understand. We offer one you can feel at home in.

RSD(S)-CRPS Advisory Info & Support Group

Years ago I had an RSD Support Group at MySpace. At the time it was one of the largest support group for RSD/CRPS there. As MySpace went through its changes and removing some features, I went to work as a volunteer Support Leader for MD Junction at the Reflex Sympathetic Dystrophy Support Forum. I’ve been a Leader there since 2009 and second to the top in seniority.

Since I lost my group at MySpace, I waited to create another of my own until I felt confident with the venue I would decide to hold it at. Since millions of people are on Facebook for various reasons I chose to create it there since there are several options available and a very large and spread out community of pain patients.

Less than a year ago I created the RSD(S)-CRPS Advisory Info & Support Group. I was slow on the start up since within a week of creating it, I ended up in a severe and long lasting flare up. The Group is doing well and growing at a steady pace.

This time I am not running solo. In the past I’ve been an advocate and spokesperson for RSD/CRPS, promoting, advertising, endless hours of research, writing essays and articles, sharing accurate information, staying updated, maintaining my website etc the best that I could. All by myself. It’s really hard. At least for me these last couple of years. I’m in my 11th year of CRPS. My energy is minimal.

Now I have someone to work with me. And currently we’re both working on fundraising and awareness projects for the Power of Pain Foundation as a team and in conjunction with our group. My Co Administrator Wanda will be raising awareness via 2 Expo’s and I’ll be doing so by holding a balloon release project.

We’re also supporting the POPF via Causes. Our page is called “Help the Power of Pain Foundation Assist Those with RSD/CRPS & Other Neuropathic Pain Conditions

Our group is devoted to the support and guidance of RSD/CRPS patients, family and friends of.

Our mission is to teach and be taught…

                                                   …It’s our hope to educate and learn.

We’re a family oriented group. Caring and compassionate. Stop by and take a peek. We would love to have you join us and become part of our online family.

We have a Wonderful Co Administrator (Wanda) and Great Group Leader’s. Our discussions include pain management, the pain we endure on a daily basis, medications, alternative methods of pain control, the use of vitamins and supplements, depression, biofeedback, cognitive beliefs, coping strategies, flare up protocols, clinical trials, various therapies and techniques, meditation, yoga, the use of distraction and modalities, physical therapy, each other and so much more.

We also allow you to share other RSD/CRPS related information sites, books, videos, including your own website, blog, foundation, organization, or media pages. This is for the purpose of spreading further awareness and information around the web and hopefully off also.

All we ask is that you don’t spam us.

We would also be thankful if you shared us with others as well.

RSD(S)-CRPS Advisory Banner

Click on our banner above to go to our website

Hope to meet you in our Support Group!

Wishing you pain eased days and nights,

~Twinkle

Faces of Pain Video 5 by the Power of Pain Foundation

The Power of Pain Foundation is a 501(C)(3) Non Profit Charity dedicated to the heath and welfare of patients and caregivers struggling with Reflex Sympathetic Dystrophy RSD, Complex Regional Pain Syndrome CRPS and other Neuropathic Illnesses such as Diabetic Neuropathy and Post Cancer Pain.

There are 10 million people diagnosed with RSD/CRPS in the U.S. alone. This is a  chronic, painful, debilitating and often progressive autoimmune and neurological disorder that affects the Sympathetic Nervous System and the network of nerves along the spinal cord that send messages to the brain.

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These are the faces of survivor’s

This video was produced by Twinkle and Kurtis VanFleet of RSD(S)-CRPS Advisory

 

 

 

The POPF and the Living with HOPE Radio Show

Great news!

The Power of Pain Foundation Logo

The Power of Pain Foundation (POPF) and Barby Ingle are now sponsoring the Living with HOPE Radio Show with your Host Trudy Thomas.

Trudy’s goal is to promote awareness for the millions of people who struggle with chronic pain daily. To let people know they are not alone in their struggle and that there is life after diagnosis. Trudy discusses various therapies and the emotional turmoil of having a chronic incurable condition such as
RSD/CRPS and coming out on the other side.

People often times wonder where the money goes that they donate to an organization or foundation.

The Power of Pain Foundation is a 501(C)(3) non profit charity. All donations are tax deductible.

We’re passionately promoting the Power of Pain Foundation so they can continue to serve patients and caregivers dealing with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome, Post Cancer Pain, Diabetic Neuropathy and other painful neuropathic conditions. Our fundraising page exists in an effort to help serve their the cause.

Beneficiaries include patients who are economically and socially affected by these invisible diseases. The POPF will help you face the challenges and life changes of chronic nerve pain, head on.

Donations are also used to serve the public in order to promote RSD/CRPS, Neuropathic and Chronic Pain awareness via Radio and other media. The sponsorship of the Living with HOPE radio show will serve that purpose.

~Twinkle V.