Voices Across America

Chronic Regional Pain Syndrome: See What We Feel


State: Texas
Congressional District: TX20


Rare Disease

Issues and Challenges

Samantha has encountered: Access to Expert Providers, Access to Medicine, Insurance Issues, Medicare / Medicaid Issues, Rare / Underserved Disease, Disability, Invisible Illness, Medical Discrimination

My Story

In 2008, I developed Complex Regional Pain Syndrome (CRPS) formerly known as Reflex Sympathetic Dystrophy (RSD).

I've lived with Chronic Pain since my early teens, prior to developing CRPS/RSD I was able to work full time with occasional medical intervention. My CPRS diagnosis shifted my perspective of everything I once thought I knew about living with pain. CRPS is a rare disease that was first documented in the United States during the Civil War, when injured soldiers continued to experience burning pain long after the injury had healed. At that time they named the condition Causalgia.

Physicians don’t know why it develops, but CRPS is a nerve disorder that usually occurs after a traumatic injury, surgery, sprain, fracture, infection or a period of immobilization. CRPS/RSD is said to be the most painful chronic disease that’s known today. On the McGill Pain Index it (Causalgia) scores 42 out of 50.

How does that compare to other types of pain and/or chronic pain conditions? Arthritis pain is ranked about 18, Non-terminal Cancer pain at 24 and Chronic Back Pain is at 26. Natural labor and delivery of a first child is about 35. With a score of 40, the pain associated with the amputation of a digit comes closest to matching the intensity of CRPS/RDS.

Obtaining effective treatment is a challenge. Many medical professionals are unfamiliar with the condition. It took over a year and seeing a variety of specialists before I was accurately diagnosed. I finally had an explanation as to why the pain wouldn't stop. I was hopeful that with a diagnosis my condition would be manageable and I would be able to return to work. My hopes were quickly dashed as I discovered that CRPS is extremely difficult to treat. There is no medication that is FDA approved to treat it.

I was on multiple medications to attempt to manage the pain. The combination of medications resulted in me developing Serotonin Syndrome, which neither my doctor or pharmacist warned was a potentially fatal adverse drug reaction. Opiods provided a modicum of relief. Enough that I was able to perform basic self care tasks without assistance. But, obtaining my medication felt like an exercise in futility some days. Invariably, the pharmacy would be out of stock and I'd have to visit 3 or 4 locations to fill my prescription. Or, the pharmacy would say it was on back order and would be in 3 days. The 3 days often became a week, and then 2 weeks before the medication was in.
The lack of effective pain management had a dramatic impact on my life. I went from working 60 to 80 hours a week to being home bound. My career as a Disaster Recovery Specialist was effectively over. My income decreased dramatically. Where I had been earning six figures prior to becoming disabled, my income was reduced to about my previous income tax liability. It took 3 years & a hearing before an appeals judge to get my SSDI claim approved.

During that time I was lucky enough to have private health insurance through my husband's plan. After the SSDI was approved and Medicare was authorized and became retroactive I was in for an unpleasant surprise. I had surgery while my case was pending that was pre-authorized by the private insurance company (PIC). Once Medicare became retroactive, it became my primary insurance and the PIC requested reimbursement which was granted. To my dismay, Medicare denied the claim because *they* had not pre-authorized the procedure.

I now have a more effective pain management regimen that has improved my quality of life and ability to function. My life will never be what it once was, but I'm no longer trapped in my recliner or bed 24/7/365 only able to perform the most basic self care tasks without assistance. The first two years my right hand was locked into a claw. After 3 months of physical therapy I was informed that I had reached maximum medical improvement and would have to learn to live with it. I was determined that I would regain the use of my hand. It's not 100%, but my persistence paid off. I can write, and taught myself to create graphics which I use to translate people's descriptions of pain into visual form, so people can see what we feel.

Adjustment to my new life was difficult, but I've found satisfaction in advocacy and helping other to understand what it's like to live with a rare and painful diseases. My hope that is our combined advocacy efforts will restore Individualized Care with clinician and patient autonomy to the practice of pain management.

My Motivation and Inspiration

The lack of awareness, understanding and treatment options for Complex Regional Pain Syndrome has motivated me to advocate. To help people who haven't experienced Chronic Pain to understand what it's like to live with Rare and Painful Diseases, and ensure health equity for all who live with complex chronic illnesses.

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