Jan 29, 2015Rising Above Pain
A mysterious and debilitating condition, Complex Regional Pain Syndrome is showing up more frequently in young athletes. There is no cure, but researchers and practitioners are finding effective ways to manage the symptoms and reduce their impact on quality of life.
By Maria Hutsick
Maria Hutsick, MS, LAT, ATC, CSCS, is Head Athletic Trainer at Medfield (Mass.) High School and former Head Athletic Trainer at Boston University. She can be reached at: [email protected].
My foot hurts whenever I touch it–even wearing a sock is unbearable,” the athlete tells you, pointing to her left ankle. You treated her for a simple sprain last month, but these new symptoms don’t make any sense. “Most of the time it feels like my skin is burning, or being zapped with electricity.”
Your examination reveals moderate swelling and some redness. You also notice that the ankle is strangely cool to the touch, and has limited range of motion. In fact, even the slightest manipulation puts the athlete in obvious pain.
She has suffered no other injuries since the sprain, so there’s no clear explanation for the current symptoms. Stumped, you refer the athlete to a physician and ask her to report back to you. A few days later, you learn the diagnosis: Complex Regional Pain Syndrome.
If you’ve never heard of CRPS, you’re not alone. This under-recognized and often misdiagnosed condition can affect athletes of all ages, causing a major disruption in sport performance and everyday life. And while there’s no cure, clinical research and experience treating high school and college athletes has shown me that CRPS can be managed successfully once it has been diagnosed.
Most of the time, pain can be attributed to a specific cause–a soft tissue injury, a strain or sprain, an abrasion, or some other damage or dysfunction within the body. But with CRPS, also known as Reflex Sympathetic Dystrophy (RSD), persistent pain in one or more limbs occurs without a clear physiological explanation.
Several theories exist on where this pain comes from. Some researchers believe it stems from a malfunction of localized pain receptors, while others point to certain chemical messengers in the body that may disrupt functioning of the nervous system. In many cases, CRPS is triggered by an injury or surgical procedure, leading some to believe the condition is linked to problems with the body’s natural healing processes and immune system.
While the cause remains mysterious, the symptoms are very real. The pain of CRPS is generally chronic, and often described as a burning, tingling, shooting, or “pins and needles” sensation. It can vary in intensity but is present most of the time, and may fluctuate between throbbing, dull, aching sensations and acute, stabbing pains. The location of the pain is variable but it often concentrates in a leg, arm, knee, foot, or hand, and the pain distribution sometimes follows the shape of a glove or sock.
Someone with CRPS typically presents with allodynia, or a painful response to normally innocuous stimuli, such as a light breeze, soft touch, or the normal rubbing of clothing over the skin. The individual also often experiences hyperpathia or hyperalgesia–heightened sensitivity to painful stimuli. A pin prick, slight bump, or other source of mild pain in most people will seem excruciating to this person.
When examining someone with CRPS, it’s common to observe skin discoloration (usually redness, blueness, paleness, or blotchiness), some degree of swelling, and abnormal localized coldness to the touch. For example, if an athlete complains of pain in the left hand, that hand may feel cold while the right hand feels normal. Other times, the affected area will feel warmer to the touch than the same area on the unaffected side of the body. This symptom is most likely caused by abnormal blood flow and spasms in the blood vessels around the site, and it can also lead to general weakness and lack of coordination in the area.
One of the hallmarks of CRPS is unpredictability. It may last for several months and then go away spontaneously, only to return later. Or it may last for months, then go away and never return. In addition, the symptoms can vary widely over the course of the disease, and some can be downright bizarre. In one of my athletes who suffered from CRPS in her arm, the hair on the affected skin developed a fur-like texture.
CRPS can strike at virtually any age, and medical survey research suggests it is becoming more prevalent in adolescents and young adults. Several studies have found that females are roughly two to three times more likely to develop the condition than males. AFTER THE DIAGNOSIS
Since many clinicians are unfamiliar with CRPS/RSD, it often goes undiagnosed or is mistaken for another condition at first. In fact, according to the Reflexive Sympathetic Dystrophy Syndrome Association, people with CRPS see an average of five different physicians before the condition is correctly identified.
Any time there is a disconnect between the amount of pain that’s expected in a given situation and the amount reported by the athlete, CRPS should be considered as a potential cause. Persistent, intense, unexplained pain after a minor injury or small medical procedure is often the most pronounced sign that leads to a diagnosis.
While there is no cure for CRPS, a number of options can help manage the pain and treat the symptoms, and a multi-disciplinary approach is often most successful. As a first step, a doctor may prescribe topical analgesics, opioids, corticosteroids, anti-seizure drugs, or vasodilators. Sometimes, an athlete must experiment with several different medications before finding the one that best addresses their symptoms.
In some cases, an anti-depressant drug and/or psychotherapy are also used to treat CRPS. While it’s important to acknowledge that the pain and other physical symptoms are real and not simply psychosomatic, studies of CRPS patients have revealed a psychological component to the condition that often responds to treatment. The exact nature of this mental link is still poorly understood, but it may relate to the stress and anxiety produced by persistent pain with an unknown cause.
Physical therapy for someone with CRPS can take several forms, all of which focus on stimulation and movement. Many CRPS patients have been put in casts, on crutches, or even in wheelchairs to reduce their pain, but this is the exact opposite of what should be done, since these steps do not address the physical problem and may exacerbate weakness and atrophy in the affected area. Movement must always be a top priority in treating someone with this condition.
Since mobilizing joints and muscles can be very painful for the athlete, topical analgesics can make treatment more tolerable. Some therapists have also used desensitization therapy, in which the nerves and tissues affected by CRPS are actively stimulated with vibration, massage, heat, cold, or tactile irritation, with the goal of gradually diminishing the pain response. (See “Irritation Therapy” below for specific examples of how this therapy is performed.)
Electrotherapy has also produced good results for some patients. Typically, electrodes are placed near the spinal cord and the electrical stimulation interferes with the pain-producing signals sent throughout the body. In severe cases, an electronic device can be surgically implanted near the spinal cord to provide consistent pain-relieving nerve stimulation.
If CRPS symptoms do not respond to these treatments, a physician may recommend more aggressive measures. These can include pumps and implanted catheters that deliver pain medication directly into the spinal fluid, injections of pain-dulling substances called nerve blocks, or even surgical destruction of some of the nerves in an area affected by CRPS.
During my 32 years as a clinical athletic trainer, I have dealt with several high school and college athletes who were diagnosed with CRPS or RSD. In my current high school setting, I have three active cases:
Athlete No. 1. As a 13-year-old in 2004, this female soccer player suffered a hard fall on the field and could not walk on her left leg when she got back up. The pain associated with her injury progressed rapidly, to the point where she was totally disabled with very limited use of all her limbs by January 2005 due to the extreme response of her neurological system. She even suffered from intermittent memory loss.
An MRI, ultrasound, EMG, nerve conduction study, and spinal tap were all unable to pinpoint a specific cause of the pain and other symptoms. At times, the headaches and sensation of burning pain in her extremities were so severe that she could not tolerate anyone even touching her skin.
After considerable frustration (including visits to a doctor who told her the pain was all in her head and that she was “making up” her symptoms), a physician and a neuropsychologist determined that her condition was caused by a combination of CRPS and a concussion. She underwent intensive therapy, including treatment at Children’s Hospital Boston’s Pediatric Pain Rehabilitation Center, a leader in providing care for young people with CRPS.
The athlete learned that if she didn’t stay active daily, she would begin to lose function in the affected limbs. She recovered slowly and was eventually able to return to the soccer field, but soon developed severe leg spasms. She now takes a pain prescription called Gabapentin and undergoes intensive physical therapy, including irritation therapy, manual therapy, and proprioceptive neuromuscular facilitation.
Today, the athlete is a senior in high school who plays varsity soccer and lacrosse. She still struggles with pain at times, has limited sensitivity in her fingers, suffers from a constant low-grade headache, and is abnormally sensitive to light, sound, and touch. But despite all this, she has developed a very positive attitude and a high pain tolerance to fight through the symptoms and lead a normal life.
She exercises daily and undergoes deep tissue massage, acupuncture, and skin irritation sessions when the condition flares up. After all that she learned while battling CRPS, she is now planning on majoring in athletic training in college.
Athlete No. 2. This 14-year-old female sustained an ankle injury that required surgery. During her rehab she showed signs of CRPS, but her physical therapy forced her to work through the pain and regain her range of motion and strength, and she responded well to the challenge. Then, two years later, as a competitive swimmer and active individual, she began to experience pain in her left big toe. Her family took her to a physician, who placed her in a walking boot but did not closely review her x-rays.
When she brought her x-rays to the athletic training room, we noticed that she in fact had a fractured sesamoid bone, which explained some but not all of her pain. The boot was discontinued in favor of a special foot pad that would allow for greater movement, and we began a therapy program that included range of motion exercises, irritation therapy, and strengthening. Her pain began to subside and she eventually returned to full weight bearing, participating in varsity field hockey and ice hockey.
She undergoes irritation therapy at times when the CRPS returns, and reports to me when the symptoms reappear for assistance or to talk about self-treatment strategies. Her lower leg and foot sometimes become very inflamed, which causes difficulty walking and extreme skin sensitivity, but the irritation therapy helps to reduce those symptoms.
Athlete No. 3. This 15-year-old female had been a swimmer and soccer player, but when subluxation and eventually total dislocation became chronic problems in her shoulder, accompanied by persistent pain, she had to cease all athletic endeavors. A physician diagnosed her with both CRPS and a multidirectional instability.
She lost most of her muscle control due to pain and atrophy, and her humerus would dislocate in all directions even while she was at rest. She eventually underwent shoulder surgery and was placed in a sling and swathe for six weeks. That resolved the dislocation problems, but her CRPS remains. She has a long road of therapy ahead, and recently entered the pediatric pain program at Children’s Hospital Boston.
All three of these young people faced a disruption in their academic, athletic, and social lives. Physically, they deal with all types of pain. Psychologically, they face the stress of the condition’s unpredictability, the fear of what it means for their short- and long-term health, and anxiety from people who doubt the validity of their complaints related to this mysterious and poorly understood condition.
They have persevered through nerve blocks, various courses of medication, and many medical appointments. They have had to learn to tolerate extreme pain during simple tasks such as showering, and have received intensive physical and psychological therapy to learn how to cope with chronic pain and take care of themselves.
Any time you suspect an athlete may have CRPS/RSD, it’s important to have them consult a doctor as soon as possible, and to make sure the doctor knows about your concerns. If they are diagnosed with a pain disorder, the physician will take the lead in planning a course of treatment, and you can play an active role in physical therapy to resolve and manage their symptoms. While CRPS can be a frightening diagnosis, the right treatment and emotional support from athletic trainers can make a huge difference in reducing suffering and improving quality of life.
Sidebar: IRRITATION THERAPY
One of the main strategies used to desensitize painful tissue in athletes with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD) is surface irritation of the affected area. In my athletic training room, we use several items to assist with this type of therapy.
For example, we have separate five-gallon buckets filled with uncooked rice, dry macaroni, and sand. An athlete with CRPS in their hand or foot will stick the extremity into each bucket and move it around for 10 to 30 minutes (depending on how much they can tolerate) to irritate the skin. It is very painful at first, occasionally causing an athlete to cry or even vomit, but it eventually calms the nerves and dulls the pain receptors in the area, providing symptom relief.
We also use rough sponges, vegetable brushes, and a variety of towels and cloths to rub the affected area as another form of irritation therapy. Massage tools, hot packs, and paraffin baths are helpful as well. Athletes with CRPS can come to the athletic training room when they feel they need treatment and use these implements on themselves–or, because they often cannot bear self-treatment of this type, I’ll do it for them.
Usually, irritation treatment produces a vasoneural response. The athlete may break out into a cold sweat and become nauseated or dizzy. It’s sometimes difficult to continue with a session that puts them in obvious pain, but I frequently remind them that in the long run, it will bring relief and make it easier to function in sports and everyday life.
Sidebar: BLOCKING PAIN
When University of Illinois volleyball player Kayani Turner began spring practice in 2006, she was coming off rehab for a left leg stress fracture that had ended her 2005 season. After more than a month in a walking boot and another month rehabbing, the 6-foot-2 left outside hitter–one of the Big Ten Conference’s best–looked forward to playing her junior season pain-free. But after a few weeks of conditioning and slow reintroduction to volleyball activities, Turner’s pain returned–and it was more intense than ever.
“I’d never experienced anything like it,” she says. “It felt like someone was taking a hammer and whacking my shinbone as hard as they could, causing sharp pains up and down my entire leg. Most of the pain was in my lower leg and around the knee, and I felt a lot of pressure as if my knee was swollen, but it wasn’t.”
X-rays and an MRI ruled out another stress fracture and any other structural damage, so Turner played through the pain while the school’s medical team worked on diagnosing her condition. Suspecting that it might be Complex Regional Pain Syndrome, Illinois Team Physician Jerrad Zimmerman, MD, used a process of elimination before settling on the diagnosis. “Before we could come up with a diagnosis of Complex Regional Pain Syndrome, we had to rule out anything else,” he told ESPN.com. “It can take months to diagnose because of all the testing it takes to rule out other possible [sources] of her pain.”
After diagnosis, Turner underwent a series of trial-and-error treatments and procedures, including lumbar shots, acupuncture, epidurals, and a course of arthritis medication, all to no avail. “At that point, my doctors told me the only other possible solution was rest,” Turner says. “So toward the end of the 2006 season, I completely shut things down.”
Still in excruciating pain, Turner sat out the entire 2007 season. Spending the year as what she calls “a normal student,” she did no strength and conditioning work. Her only physical activity was walking to class and attending volleyball practices as a spectator.
“We hoped the rest would allow me to be comfortable and lead a normal life,” she says. “During that year and a half off, I began feeling better. I was pain-free more often, so I eventually thought I should give volleyball another try.”
In the spring of 2008, with Zimmerman and Illinois Assistant Athletic Trainer Randy Ballard, MEd, LAT, ATC, Turner began a series of low-impact workouts that gradually became more strenuous. “I’d start with 25 percent of what everyone else was doing, and if my pain was tolerable after a couple days, I’d move up to 50 percent and just keep going,” Turner says. “Eventually, I was able to do plyometrics and some jumping and landing, along with other volleyball-specific work.”
Turner’s new goal was to rejoin her teammates in time for their trip to Europe in late May. She was successful, sitting out just one match, and the Illinois coaches used the trip to gauge her improvement and ability to contribute in the upcoming season as a fifth-year senior. They also moved her to a new position on the right side, which required less repetitive jumping and landing than left-side hitters do in the Illini system.
In the 2008 season, Turner helped lead a young team to a Sweet Sixteen berth in the NCAA Division I Tournament and a final ranking of 11th in the Bison/American Volleyball Coaches Association final poll. Though she was not completely pain-free, she was able to successfully manage her symptoms with help from Zimmerman and Ballard.
“We worked together and communicated well–I told them how I was feeling and they accommodated me with appropriate workouts,” Turner says. “Randy also looked out for me and made sure I was never doing more harm than good by pushing myself. There were days when I’d come to practice and my leg would be hurting badly, so I’d limit my jumping or do none at all. Everything was based on how I felt each day.”
She also credits Ballard with helping her through some of her darkest times emotionally. “He was my rock,” says Turner, now an Assistant Volleyball Coach at Western Illinois University. “He saw me at my worst, when I’d be crying my eyes out after games, and he’d console me and reassure me that we’d figure things out. I doubt I would have gotten through this without his support.”
— R.J. Anderson
I just wanted to thank you for writing this article. I am a 22 year old female and long time athlete who has struggled with chronic pain since I was 7. I was diagnosed with CRPS about 5 years ago, after many years of struggling to figure out what was wrong. This article is one of the best I’ve found in terms of being very concise and clear as to what it is like to live with CRPS. Though I know all about it now, I wish I’d had this information a long time ago and I hope someone out there will benefit from becoming aware of this information. Thank you.
– Rachel Ellis
This is a great article with one problem…RSD/CRPS is not always with a good outcome……many people with this diagnosis go onto much more severe pain as it progresses…it can and does spread in 70% of patients..there is no cure as you stated but there is nit always a good outcome either….my husband has suffered with this disease since 1998. He was not diagnosed for two years and that caused much more pain…he was able to continue his job as a police officer until he was injured again in 2006..it has been downhill ever since…his pain has increased ten folds, the RSD has spread to all four limbs..he had to retire from the sheriff dept. He has done therapy forever, been on all meds with them just taking the edge off..he has an SCS implanted which has allowed him the usage of his arms, but doesn’t block the pain like he was hoping….please don’t mislead others with the premise that this will get better…some can improve, many cannot…they also call this a suicide disease because many people don’t believe the pain is as intense as it actually is…thank you
– Claudia Green