International Research Consortium for Complex Regional Pain Syndrome

Hi, I am Amanda otherwise known as One Footed Phoenix online and this is the official GoFundMe Campaign to raise funds in honor of September Pain Awareness Month for CRPS (Complex Regional Pain Syndrome) Research and Education. CRPS has no true known cure in the medical world. It is often missed for other conditions or diagnosed late because it is currently diagnosed through meeting a certain number of symptoms that fall within the syndrome. On the McGill pain scale it ranks for type two CRPS from 42 all the way up to 47 points with 50 points being as high as the scale goes. Patients are often told that it's all in their heads, that they are making it up, or that they are drug addicts when they turn to the medical system for help. It's time for doctors to be more informed and compassionate, willing to help those of us with CRPS rather than brush us to the next doctor. Help me fight CRPS otherwise known as "the suicide disease" during September Pain Awareness Month and November CRPS Awareness Month!

You can find the nonprofit all the fundraiser money is going to here: https://www.crpsconsortium.org/

My Story/ Why I Want to Fundraise for CRPS Research

In May 2018, I was hit by a car while riding my bike as a missionary with my church. In June, I returned home after a month of incredible pain and a quite swollen ankle from that original smash injury to my left ankle.

In January 2019, I was diagnosed with Complex Regional Pain Syndrome. My physical therapist at the time caught my symptoms fairly quickly, but this isn't the case for most who deal with or get diagnosed with CRPS. My ankle was on horrible fire, I felt like a thousand knives were stabbed right through my foot. It often appeared dark purple or red, swollen, and my skin looked like the marbling you see in bathroom tiles.

CRPS has no true known cure in the medical world. It is often missed for other conditions or diagnosed late because it is currently diagnosed through meeting a certain number of symptoms that fall within the syndrome. Patients are often told that it's all in their heads, that they are making it up, or that they are drug addicts when they turn to the medical system for help.

As CRPS progressed over the next 3 and a half years, I tried everything I could both FDA-approved and non-FDA-approved treatments. I tried nerve blocks both in my spine and under my knee that provided hours of relief at best. I tried Low Dose Naltrexone (LDN) but unfortunately, it messed up my mental health in a matter of days. I tried Gabapentin, a nerve and seizure medication often used for CRPS patients. High doses of this medication can have some fairly serious side effects, but taking it combined with other treatments is effective for some CRPS Patients. For me, it wasn't enough. I turned to a compounded cream that wasn't covered by my insurance at about $200 every month. Still, I had horrific pain flares that lasted for weeks or months. I turned to getting lidocaine IV infusions but still, the relief was temporary. A couple of days at best.

In 2020 just before things shut down and came to a halt here in the States, I received a 5-day Ketamine treatment with an increased dose each day. I had to travel nearly two hours to get access to the treatment and it still was only temporary relief from the hell I was enduring. I received many more boosters of ketamine in Emergency Room visits as CRPS continued to worsen and my ability to walk became less and less.

Finally, I decided it was time to consider amputation. Amputation is not the standard practice by any means for CRPS patients because it involves a lot of medical risk in the hope of a better quality of life. Now, nearly three years later, I advocate for more research on CRPS amputations and better treatments for my friends living with the effects of full-body CRPS.

Each year, approximately 300,000 people worldwide are afflicted with Complex Regional Pain Syndrome (CRPS; also called Reflex Sympathetic Dystrophy or causalgia), a neuro-inflammatory disorder that occurs in response to physical trauma such as a severe sprain, bone fracture, crush injury or surgery. CRPS causes nerves to misfire, sending constant pain signals to the brain, even long after the original injury has healed. The resulting pain is chronic, intense, disabling, and disproportionate to the original injury. The level of pain is measured as one of the most severe on the McGill University Pain Scale.

CRPS is difficult to diagnose, and there is no known cure. It is life altering, and negatively impacts daily activities, relationships, work and school. Yet, it remains one of the most widely under-recognized and misdiagnosed chronic pain conditions. Although significant strides have been made to better understand CRPS, more research must be done to fight this devastating disease.

Since 2015, the International Research Consortium for CRPS has made it our mission to find more effective diagnostic and treatment options. With almost 80 individual members and 40 participating research sites, our members are international leaders in CRPS research, experienced and noted rising stars alike. By fostering collaboration and coordination between researchers on a global scale, together we can achieve more compelling and relevant research results.

Now, we need to take our efforts to the next level.

Specifically, we want to answer a primary question that may dramatically affect the development of treatment options: Do all patients experience the same signs and symptoms -- or does it vary by stage or group? Is CRPS a uniform phenomenon across individuals, or are there distinct subtypes and/or stages? In other words, why do treatments work for some, but not others?

In 2003, experts gathered in Budapest to make recommendations for CRPS protocols, the results of which were published as the “Budapest criteria”. Since then, the Budapest criteria has become the definitive standard by which clinicians diagnose and treat CRPS. The founders of our organization, R. Norman Harden and Stephen Bruehl, were instrumental in validating the criteria.

When it was originally established, the Budapest criteria was purposefully broad in its recommendations, and not designed for specific sub-types, stages or groups. This “umbrella” approach proved to be a vast improvement in CRPS research – but there’s more work to be done. Further research is needed to identify subsets of the disease so that more effective interventions can be developed.

That’s where your donation comes in.

With your financial support, we can develop the methodology to identify clinically significant subsets of CRPS such as warm and cold CRPS; CRPS-Type I (without “major nerve damage”), CRPS-Type II (with “major nerve damage”); stage of remission; and others. It will also enable us to conduct the studies required to achieve statistically relevant results.

You can learn more about our efforts on our website, crpsconsortium.org. If you’d like to learn more about CRPS in patients, please visit our sponsor’s website, Reflex Sympathetic Dystrophy Syndrome Association (RSDSA).

Thank you in advance.