Learning Pain Together: Tracey's Story

21 years ago, a toy computer fell on Tracey’s foot, fracturing two of her toes and crushing her toe knuckles. Tracey figured the usual treatments would solve the problem in no time: rest, ice, elevation and a regimen of over-the-counter pain medication. But more than two weeks after the accident, Tracey’s entire leg was boiling with pain.

“My leg felt like it was on fire, but ice cold to the touch and so discolored from my groin to my toes that it looked like someone colored my leg with a black magic marker,” Tracey said. “I knew something was very wrong.”

Tracey’s health care team diagnosed her with reflex sympathetic dystrophy – now more commonly known as complex regional pain syndrome (CRPS) – a kind of chronic pain that usually affects the arms and legs after an injury, surgery or stroke. It’s extremely rare, with fewer than 200,000 Americans diagnosed each year.

Tracey’s doctors presented an array of treatment options – nerve blocks, epidurals and other traditional pain relievers – but none provided lasting relief. In fact, most wore off within 24 hours or less.

“CRPS comes back fighting, even worse after each treatment I soon found out,” Tracey said.’

So Tracey opted for a sympathectomy, a surgery to remove part of the nerve chain in the spine in an effort to keep nerve signals – pain signals – from passing to and from the brain. In Tracey’s case, doctors cut out the base and nearly 12 inches of the sympathetic nerve for her left leg. The procedure worked, and Tracey lived relatively pain free for four years. She went back to work, got married and had her second daughter. But, unfortunately, Tracey’s remission was not permanent.

“When my second daughter was two years old, she had her tonsils removed, and I stayed in the hospital with her,” said Tracey. “I fell asleep in her bed, not realizing or thinking twice about the fact that my foot was pressed up against the footboard. When I awoke the next morning and stood up, I realized my CRPS had returned. I couldn’t put any weight on my foot without feeling excruciating pain. We had not realized something as simple as resting my foot in certain positions could be a problem. It was heartbreaking.”

Over the next five years, Tracey’s CRPS spread throughout her whole body, leaving her bedridden in debilitating pain 95 percent of the time.

“The pain claimed a big part of my life and independence,” said Tracey. “It forced me to quit my job and rely on my husband and 11-year-old for so much, including the care for our youngest. I quickly found myself in a deep depression.”

At one point, Tracey’s pain had driven her to consider suicide. But her family kept her holding on.

“Through my husband and my daughters, I found my will and motivation to live,” said Tracey. “I made a vow to always fight, not to let chronic pain win. We found a support group and my family went to counseling to help work through this illness together.”

Tracey tried lidocaine infusions, fentanyl patches, oxymorphone and other medications, all to no avail.

“Nothing worked for my pain, and most had nasty side effects like brain fog, memory loss, weight gain and loopiness, which I hated,” she said. “Then, I started experimental ketamine infusions. Those worked for eight years, and then for two years they didn’t and my pain went through the roof again.”

Tracey was desperate for new treatment options. Fortunately, a new treatment option came knocking – or rather, emailing.

“I design CRPS awareness items and have a store on Zazzle,” said Tracey. “A former [medical technology company] employee and board member emailed me through my store about a ribbon that I had designed. I noticed his email was from [the medical technology company], so I asked him what that was.”

Tracey’s new pen-pal told her about the different medical technology innovations available to serve CRPS patients, including pulsed electromagnetic field (PEMF) therapy. PEMF uses pulsing electromagnetic waves at precise frequencies to speed recovery at the cellular level. In short, the waves help restore the positive and negative charges in the body’s cells, resulting in increased circulation, reduced inflammation, improved mobility and pain relief. PEMF has been used as an effective pain management treatment for more than 60 years.

Tracey uses PEMF therapy at home on a regular basis. Her PEMF device is lightweight, wearable and portable – she can use it for her leg or wherever she’s experiencing pain.

“For the first two months, I used [it] six to eight times per day with full 30-minute sessions, plus under my pillow each night for at least one session,” said Tracey. “Then, after about two months, I’d forget to use it during the day because I wasn’t in pain. My pain had gone from a 9-10 to under a 2 in a matter of three to four months.”

Today, Tracey still uses the PEMF device every night, and only has to use it during the day as a preventative measure a few days a week.

“[PEMF] has brought my pain down to almost nothing,” Tracey said. “It’s helping with so many different symptoms, and I have been able to take back my life and do the things I love again. I haven’t had a [pain] flare in over a year, even with a few falls. The swelling and discoloration in my leg is also gone, and I’m in the process of decreasing my pain patch. I have one or two more decreases and I’ll be totally off all meds thanks to [PEMF]!”

Now, Tracey shares her story as a beacon of light for others who might be suffering.

“I hope my journey will inspire more doctors and individuals with chronic pain to consider PEMF in their search for relief,” she said. “When others with CRPS or chronic pain ask me for advice, I tell them finding a doctor that is knowledgeable about CRPS, or any chronic pain condition they may have, is key. But it’s also important to understand that because many chronic pain conditions are rare, not all physicians are experts, and we are all still learning together.”