Mary’s journey with Complex Regional Pain Syndrome (CRPS)

After the 2004 Indian Ocean tsunami struck, our foundation, called Asian Disaster Foundation, was providing food to affected families in the South of Thailand. When another earthquake in Indonesia caused a second tsunami, people started to panic and I was trying to get the volunteers out of the hotel into safety. During the mayhem, I had an accident and broke my leg. Nothing too severe, a hairline fracture, so the doctor in Phuket put a cast on and said it was fine. I went back to Chiang Mai to recover, but after a while, I began having severe pain in my leg and I thought, this is not normal for just a hairline fracture. The amount of pain was excruciating. So I went to an orthopedic surgeon who removed the cast and told me I had RSD, reflex sympathetic dystrophy (how Complex Regional Pain Syndrome (CRPS) was formerly known as).

Our autonomic nervous system (ANS) controls our fight-or-fight response, it stimulates the adrenal gland and regulates internal organs and their functions, such as heart beat, breathing, digestion and urinary tract. CRPS affected my sympathetic nervous system, which is part of the ANS, causing the nerves to send ping signals to the brain telling it that there was pain in my foot, although there was nothing wrong with the foot. It started escalating and became dysfunctional. These pains caused by the nerves themselves were excruciating, even the slightest touch of clothes or even a breeze on the skin was unbearable.

I was referred to Assoc. Prof. Dr. Chomchai Vichitrananda at Bumrungrad International Hospital and I saw her in the summer of 2005. After reviewing my history and conditions, she immediately knew what I had and started treating me right away.

After a while I went back to the states and continued my treatment at Cleveland Clinic, where I saw the top doctors for this condition. I received physical therapy from extraordinary therapist, who taught me how to continue the PT on my own. But the climate was not beneficial, so we moved to Houston, and I saw the top doctors at MD Anderson.

The doctors in the US were very impressed that I was diagnosed so quickly. In the US, many people suffer from CRPS for at least three years before they are finally diagnosed. It is not a well-known or well-understood condition. There is no physical damage to the extremities and many people are even treated like they are hypochondriacs. Fortunately I met Dr. Chomchai early on and I have a very good support system, I am so grateful having my husband, family and friends who walked with me on that journey.

Even after returning to Thailand in 2007 to continue our work with the foundation, I kept going with the physical therapy pretty consistently for five or six years. And eventually, my body did learn that there was no reason to assume pain. Some things would trigger the pain, and I learned to recognize it and then start with the PT. Eventually I got to a point where it felt like it was really gone. I understand that it goes into remission, but it never really is gone, like it's always there.

About three years ago, I developed arthritis in my hip. I needed a hip replacement but was told I am still too young and I should wait until I am 60 years old. There was a high risk of CRPS coming back due to the surgery. Therefore I came back to Bumrungrad for the hip surgery, because I wanted to be close to Dr. Chomchai if the surgery would trigger the CRPS. I think that Dr. Chomchai is one of the few doctors that understands this condition well and she knows how to treat it, and not just that but she's very compassionate. And that's probably the most important part, she feels compassion for the pain that you're in and she wants to help you. And I'm very thankful for her.

Sure enough, the hip surgery triggered the CRPS, and Dr. Chomchai had to start treating me again. Although it is a step back, I have complete trust and confidence in Dr. Chomchai to help me through this again. Like last time, I believe I can get better and I am determined to beat it. I have a lot of people praying for me and God is leading me to the right things.

I would like to thank Bumrungrad Hospital and all the wonderful, caring doctors, nurses, and staff who have done their best to help me get better.  This is a truly special hospital.

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