Living With Burning Pain. One Patient's CRPS Story
Complex Regional Pain Syndrome (CRPS) is a long-term, chronic condition that causes severe burning pains and other unpleasant symptoms. For Margaret Twitty, the intense pain started in her right foot.
Margaret Twitty had never heard of Complex Regional Pain Syndrome (CRPS) before she had surgery in early January 2015 to correct the bunion on her right foot. She didn’t know that this baffling disorder, often triggered by surgery, trauma or injury to a limb, can cause excruciating pain, muscle spasms, limb tremors, hypersensitivity to heat and cold, abnormal hair growth, depression and other complications. She didn’t know that the disorder affects three times as many woman as men. She didn’t know that she’d become one of the estimated 200,000 to 3 million Americans affected by this enigmatic neuro-inflammatory syndrome.
For Margaret, now 24, the terrible burning sensation that heralded the onset of CRPS began only a few days after the surgery. She’d expected some discomfort. Because bunions run in her family, Margaret had had a similar surgery on her left foot when she was 18.
But this time, the post-surgical discomfort was unlike anything she’d experienced. “I was in so much pain,” she says. “I felt like my toes were on fire, my ankle was throbbing so badly, and my shin was also in pain,” she remembers. Her mother rushed her to the emergency room at her local hospital in Groton, Connecticut.
At the ER, the doctor rewrapped her post-surgical bandages, thinking they were too tight. This lessened the burning temporarily but within days it returned and dug in. Other problems quickly surfaced. At night, the toes of her right foot went cold. Her foot became increasingly hypersensitive to the slightest touch. Insomnia, a frequent side effect of CRPS, set in.
Two weeks after the bunion surgery, Margaret’s bandages came off but the burning pain and other symptoms remained. Her podiatrist recommended consulting a neurologist.
While many CRPS sufferers spend years bouncing from doctor to doctor before being diagnosed, Margaret’s neurologist, Laurence Radin, MD, was knowledgeable about CRPS also known as Reflex Sympathetic Dystrophy. “She presented with classic indicators of CRPS,” explains Dr. Radin. “She’d recently had surgery on her foot. The skin [there] was shiny and discolored; her foot was red, swollen and extremely sensitive to cold and tender to the touch,” he adds. Six weeks after the surgery in February of 2015, Dr. Radin diagnosed Margaret with CRPS.
Working Through the Pain
Strategies for treating the painful symptoms of CPRS can be as varied as the condition itself and may involve a painful process of trial and error with medication, physical therapy (PT), cognitive behavioral therapy (CBT), and/or interventions designed to change the pain pathways in the brain. Although Margaret was fortunate to have a physician knowledgeable about the complexities of CRPS, the initial months following the surgery and diagnosis were challenging.
“From January through May, I refused to put weight on my right foot I was so terrified of the pain,” Margaret explains, recalling her anxiety. “My very patient and supportive physical therapist was the one who gave me the courage to finally put my foot down and attempt walking again.” At first Margaret used a walker and then progressed to crutches. Today, she walks without assistance but remembers it as a terrible period. “It was as if I had to learn how to walk all over again.”
To help her cope, Margaret consulted a pain specialist in March (2015) and started treatment—a series of nerve block injections. Out of the six injections, “only one was effective but I was never completely free of pain,” she laments. PT, to maintain strength and flexibility in her foot, has been the one constant and successful treatment for her condition. Margaret estimates undergoing “about 75 to 80” PT sessions—at times going three times in week—over a period of nine months.
Some of the PT was so painful her therapist advised to take a pain killer before the appointment. “I knew I had to experience some pain in order to get better and the medication helped me relax enough to work through it. Having been an athlete all my life, the expression, no pain, no gain is familiar. My physical therapist and I often recited these words during difficult sessions,” recalls Margaret, laughing.
Her current list of medications includes Topamax (topiramate) to control the involuntary twitching of her right foot and toes and Lyrica (pregabalin) for neurologic pain. Occasionally, she takes Vicodin (acetaminophen and hydrocodone) but doesn’t like the side effects. “It makes me drowsy and I don’t like feeling that way just to get a little pain relief,” she admits.
Having steady pain medication delivered through a spinal cord stimulator was also suggested but Margaret decided against it. “I was very leery and scared of having the procedure,” she says. Her mother Judy, a retired Navy officer who now works as a notary for the Navy, urged her to try mirror box therapy, a treatment intended to reform communication between the mind and the body. Originally developed by the military to help soldiers suffering from phantom limb pain, it can sometimes help patients with CRPS. Margaret had one mirror box session with her physical therapist but it didn’t seem to work for her.
At one point Dr. Radin even brought up using medical marijuana, which is approved as a treatment for CRPS under Connecticut law. “I don’t feel comfortable using it so I declined,” says Margaret. So, for now, her treatment plan is to stay on her daily medication regime and continue with PT as needed. She sees Dr. Radin every six months and meets with a nurse monthly for medication refills.
One Day at a Time
Since her diagnosis, Margaret’s life has changed in many ways. Up until the surgery, the former gymnast who took classes and competed throughout her childhood until the age of 18, enjoyed working as an assistant coach at her local recreation center. Always ready to demonstrate her skills and show off her flexibility, Margaret was literally doing cartwheels and head stands the day before the operation.
Sadly, gymnastics isn’t part of her life anymore. She also misses the happy times volunteering at a nearby equine center that trains horses for work with wounded veterans. Back in September of 2015, a horse stepped on her right foot. The fallout from that unfortunate event may have contributed to the trauma that led to her CRPS. “I wish I could go back to volunteering there,” she says. “But I just can’t risk getting stepped on again.”
While Margaret’s pain is constant, the intensity varies. “Every day is different,” she says. And since the diagnosis, Margaret admits she is different, too. “I used to be more outgoing. Now, I’m anxious, fearful, more scared of everything,” she says.
During the toughest times, her mother has provided unwavering emotional support. Many nights when sleep eluded her and “when the pain was intense, I was lucky enough to have my mom next to me holding my hand letting me know that it would be okay,” Margaret says. And she’s grateful for the support of her father who lives in Tennessee, her younger brother who works for Google in San Francisco, her friends, and especially the congregation at her Baptist Church.
Social media has played a role, too. “My mom and I are always looking for new research and information about CRPS. When I can’t find out about something online, I’ll tweet or post a photo of what I’m dealing with on Instagram and Twitter. It’s wonderful hearing from someone with CRPS who has been in my place,” she says.
On good days she enjoys venturing outside to pursue her love of photography, a hobby she took up in 2014. Writing a blog about her journey with CRPS began as a way to keep her family informed about her condition but has evolved into a place where others living with CRPS can go to connect and share information. Blogging has not only been therapeutic for Margaret but has brought new meaning to her life.
While she doesn’t know what the future holds, Margaret tries to remain optimistic. There is currently no cure for CRPS but she prays that breakthroughs in our understanding and treatment of the condition will emerge. “I would love to be pain-free and have more energy and strength,” she says. “But for now I find happiness on the days I can get out of the house and enjoy the beautiful scenery that surrounds me. I have learned to accept that although CRPS may always be part of my life, I have found ways to prevent it from controlling me.”
Her faith keeps her moving forward. “I just know that the Lord has something in store for me. I know that somehow He will use me through this disorder,” she says.
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