Complex regional pain syndrome is rare, affecting only one in 300,000 people. Yet it is the most painful chronic disease known to humankind, according to the McGill pain index. And some patients live with this disease for years and even decades before ever receiving a diagnosis.

Johnathon Goree, M.D., director of the chronic pain division at UAMS and assistant professor in the College of Medicine’s Department of Anesthesiology, says the medical community still has a lot to learn about the disease.

“What we do know is there is an overgrowth of nerves that changes the way a patient senses and feels pain,” Goree said. “It develops primarily in a patient’s arms or legs, usually after a surgery, fracture or immobility.”

Arlene Margolis, 70, of Little Rock, had lived with chronic pain surrounding her left knee for eight years.

It began after a knee replacement surgery. When the pain did not subside as expected, Margolis’ surgeon recommended she have another surgery to fix what was causing her pain. She would eventually have three surgeries on the same knee, with no relief. Her knee was swollen, painful and felt warmer than the rest of her body. Margolis tried multiple approaches to ease her pain over the years including visiting a chiropractor, an acupuncturist and a massage therapist.

“The pain just becomes part of your life,” Margolis said. “Every day I would try to get as much accomplished as I could before it became unbearable. You become aware of the types of chairs you sit in. Does the chair have arms? Is there a table nearby that I can hold on to when I try to get up?”

Margolis says because she tosses in her sleep there was pain from the moment she woke up, and it worsened as the day progressed.

“I didn’t realize how much movement my legs would do while I was asleep.”

Before she was in constant pain, Margolis was active. She walked for more than an hour a day for exercise and participated in water aerobics. She was constantly on her feet as an elementary school teacher, a career she enjoyed for 35 years. After her surgeries, she stopped exercising, retired from teaching and gave up attending regular worship services.

“I couldn’t get up and down out of a chair at the synagogue,” she said. “So I stopped going.”

Then Margolis came to UAMS.

She met with C. Lowry Barnes, M.D., chair of the UAMS Department of Orthopaedic Surgery.

“Dr. Barnes thought it would be too risky to do another surgery,” Margolis said. “He referred me to Dr. Goree. The initial treatment plan was not completely successful so Dr. Goree reassessed and interviewed me before diagnosing me with CRPS. He was the first doctor who ever told me about that (disease).”

Her treatment included a series of injections over a six-week period. The injections numbed the pain and gave her brain a chance to stop sending pain messages to her knee. When she came to her appointment for the last set of injections, she had no pain in her knee. It was no longer swollen or hot.

Goree said unfortunately many patients go undiagnosed because so few physicians are familiar with the disease.  But through research and collaboration, UAMS is providing hope for these patients.

“We created a protocol here with the orthopaedic surgeons and the physical therapists to help us identify and treat patients with this disease,” Goree said. “We know physical therapy is vital to treatment, but the challenge is that the patients are in too much pain to participate in the physical therapy they need. With a combination of nerve pain medications and injection to block the overly excited nerves, we can often get patients to a place where they can tolerate physical therapy and work toward a cure.”

For patients who have severe cases of CRPS, Goree says neuromodulation is another option. Neuromodulation alters the nerve signals of diseased nerves through delivery of an electricity. Some examples of neuromodulation treatment offered at UAMS include spinal cord stimulation and dorsal root ganglion stimulation. The dorsal root ganglion is a cluster of neurons near the spinal cord that may contain most of the diseased nerve signals that cause CRPS.

“In this procedure, we place the device directly on the dorsal root ganglion, the nerves that cause the disease.  It works like a pacemaker for the nerves and alters the diseased pain signals, allowing patients to go through the therapy they need.  For some patients, this new technology has been a game changer.”

For Goree, stories like Margolis’ are rewarding. He was excited when she told him she could walk, dress and put on shoes with no pain. Now she is working on regaining strength after so many years of not being able to use her leg.

“As I continue to treat this disease, I learn more about the pain and challenges patients face every day.  I’m motivated to make sure that I provide patients with the best chance at getting their life back. Whenever someone tells me they have been successful, I get emotional because it validates the work I do,” Goree said.

For 18 months, Joyce Williamson lived with constant pain. The discomfort was so intense that there were days she did not want to get out of bed.

“Being in pain takes a lot out of you,” Williamson said. “It was constant, burning, bone-crushing pain. It affected my work, everything. I was beginning to feel depressed.”

Williamson’s pain began shortly after a surgery she had in 2016 on her wrist. She developed an inflammatory condition called complex regional pain syndrome (CRPS). CRPS affects the nervous system and often causes severe pain in one limb like an arm, leg, hand or foot. Williamson felt it in her wrist and shoulder.

Medication and physical therapy can provide relief for some patients. Williamson tried several interventions to alleviate the pain, but none of them worked for her. In March 2018, she saw Christopher Paul, M.D., an assistant professor in the UAMS College of Medicine Department of Anesthesiology, for a surgery that included an implanted device known as a spinal cord stimulator (SCS).

“It works almost like a pacemaker does for the heart,” Paul said. “An SCS is implanted into the epidural space, the area between vertebrae. It sends electrical pulses to block the feeling of pain.”

Lauren Byers, A.P.R.N works alongside Paul. She says she’s inspired to see patients like Williamson get their life back.

“Just hearing that she is able to play with her grandchildren and return to work without any setbacks after being in constant pain for the past several months is huge.”

Byers says unlike many procedures, patients are able to test-drive, so to speak, the spinal cord stimulator before having it permanently placed.

“It worked so well,” Williamson said of the trial. “I didn’t want to give it back.

Before the surgery, Williamson says her pain was at a constant 8 or 9 on a scale of 1-10.

“After surgery, my pain level has been at a 1 or 2, which is like a zero to me,” Williamson said. “I feel like I have my life back.

Williamson has been able to get off four types of medications in the 10 weeks since the surgery. She’s back to her normal activities and playing in the floor with her two young grandchildren. She returned to work within a month after the procedure and says even her colleagues noticed a change.

‘“We have the old you back,’ they told me. I feel like I have my life back.”

Carye Beavers is always in pain. The 45-year-old has a degenerative bone disease that was made worse by a car accident in 2011.

Before she discovered relief from the UAMS pain management clinic, Beavers says her days usually ended around noon because it hurt too much to function regularly beyond that.

“On a scale of 1 to 10, my day-to-day pain was at an 8,” Beavers said. “By the end of the day, I was in so much pain, I couldn’t function. I was literally in tears in bed without any hope it would get better.”

Beavers soon found a solution at the UAMS Pain Clinic with Johnathan Goree, M.D., an assistant professor in the Department of Anesthesiology who specializes in pain management.

Goree says there are several surgical and non-surgical options to treat pain without opioid medication. Beavers receives non-surgical steroid injections.

“The injections reduce inflammation in nerves and in the muscle,” Goree said. “We find the specific area that is inflamed, either joints or nerves, and target it with either x-ray or ultrasound guidance. Then we inject a local anesthetic mixed with a steroid to calm the inflamed area.”

“There are no doctors I could find in my area that will do this type of pain management,” Beavers said. “They won’t even discuss it even with the success I’ve had for the past few years.”Beavers receives a steroid injection about every six to eight months. A year ago, she moved from Little Rock to Lebanon, Pennsylvania. But she still makes the trip back to Arkansas for her treatment.

Beavers’ latest injection was during Spring Break.

“With Dr. Goree and his team at this clinic, my pain is now at about a 5 or 6,” Beavers said. “For someone who has always been in constant pain, that’s a big deal. That’s a lot of relief.”

Other treatments, Goree says, are nerve ablations and spinal cord stimulation. In ablation, nerves delivering pain signals to the brain are destroyed with either heat, cold or chemicals. Because it’s been damaged, that nerve can no longer send pain signals to the brain.

For spinal cord stimulation, a physician places a device under the patient’s skin that sends electrical signals to the spinal cord. The patient doesn’t feel pain because the electrical pulses mask the pain signal.

For some patients, Goree says they use low-dose methadone because of its long-lasting effects and ability to work on more than one pain receptor.

“Most opioids only work on one receptor,” Goree said. “Eventually, that receptor gets used to the medication and it stops being as effective.”

Goree says low-dose methadone also prevents patients from experiencing peaks and troughs or highs and lows. Since it lasts longer than a drug that works for only a few hours at a time, it keeps the patient at a more steady state.

Methadone is often used to treat patients who have had a previous opioid addiction to prevent withdrawal. Goree emphasizes the medication should only be administered under the care of a trained physician.

Beavers says she appreciates the pain clinic for being open-minded about methods of pain management that fits each individual patient.

“Here, it’s not just a blanket, ‘this is what we do for everyone.’ They care about my life. I’m more than a folder they look at for five minutes before entering the room,” Beavers said. “I feel like they know me and they care. They’re treating me for my future and not just for today, giving me back hope for a quality of life that I had given up on.”

By Katrina Dupins | April 9th, 2018 |