Pain — whether related to spinal cord injury, multiple sclerosis, amputation, neuromuscular disease, post-polio sequelae, traumatic brain injury, cerebral palsy or other conditions — is the jealous mistress of disability, and it can be brutal. Three of four with SCI report it, about the same as amputees and phantom limb pain. More than half of those with TBI live with pain, and nearly as many with MS. With a neurological condition, chances are you have pain, either neuropathic (from damaged nerves sending faulty signals) or musculoskeletal/nociceptive pain (from overuse or other trauma). Wheelers report living with more pain than the general population, and once it shows up, it rarely decreases.
Pain is associated with poorer psychological functioning and social integration, and it often interferes with a large number of basic daily activities, including sleep, mobility, self-care, social activities and mood. Relief with minimal side effects is the sought-after goal, be it through drugs, exercise or surgery. But what works for Jane may not work for Jack. It may work today but not next month. It’s a big, complicated field, a medical specialty. Unfortunately, that specialty has yet to offer reliable treatment for even half of the SCI population. Fully one-third of SCI wheelers report being willing to trade bowel/bladder/sexual function as well as the possibility of cure for pain relief. Some disability-related pain may be simply unresponsive to treatment.
The broad treatment menu includes both Eastern and Western approaches. Noninvasive treatments range from acupuncture, massage, meditation, visualization and physical therapy to exercise, splinting/bracing and heat or cold. Drugs are commonly employed. Few complementary and alternative practices have established a basis for effectiveness, and conventional or accepted therapeutics are in general barely better than placebos in randomized trials.
“One very important point for people to understand is that the goal of pain management is not necessarily to eliminate pain — which may or may not be possible — but to keep it from significantly limiting function and quality of life,” says Mark Johansen, a doctor at Craig Hospital and lecturer at University of Colorado Medical School.
“Pain is, by definition, linked to emotion, and pain signals are intertwined throughout the emotional centers of the brain. Anything a person can do to manage anxiety and fear will help to reduce pain,” he says. “Adequate management of chronic pain post-SCI will almost always involve a combination of therapies, physical treatments, psychology and medications. Everyone wants some procedure or drug to quickly ‘fix’ their pain. That’s just not typically realistic.”
Pain From Nerve Damage
Neuropathic pain is a complex, chronic or acute pain condition which often accompanies central nervous system or peripheral nerve injuries or diseases. Damaged or dysfunctional nerve fibers send faulty signals, which the brain interprets as painful or out of proportion to the stimulus.
The pain often manifests as “burning” pain localized to the front of torso, buttock or legs or as aching pain localized to the neck, shoulders, and back. Others report coldness, pins and needles, electrical sensations or squeezing/banding. It can be categorized as above-level, at-level and below-level pain. With SCI, neuropathic pain often begins immediately or within six months of injury. Severe pain is usually more common the lower the lesion and is usually worse in the evening and through the night.
In addition to noninvasive treatments, surgical interventions include implanted pumps to deliver medication directly into the spinal canal or implanted units to stimulate the cord, but neither is typically helpful for long-term neuropathic pain. DREZ, a major surgery that can be effective, destroys specific areas of some nerves permanently and often involves some loss of function.
Pharmacology is a common approach, with a primary reliance on anticonvulsants (Neurontin/Lyrica) and/or antidepressants (Elavil, etc.). Opiates such as Tramadol, methadone and others are usually seen as last-ditch treatment options for neuropathic pain. Unfortunately, drug treatment delivers mixed results at best. A neurologist/wheeler friend tells me, “The pharmacologic approach usually works or it doesn’t. Some people consider Lyrica a miracle drug. Others find it doesn’t help at all.”
Many interviewed for this article spoke of side effects of using opioids to deal with central or neuropathic pain. Some found the drugs left them too foggy to feel fully productive and attentive. Others feared developing a tolerance, rendering the drugs less effective. Opioids also slow down the bowel and can wreak havoc on people with a neurogenic bowel. If used, controlled release forms provide more stable relief and are preferred.
Pain From Trauma
Musculoskeletal or nociceptive pain results from trauma — a broken bone, sprained ankle, a pulled hamstring or a burn, often sharp or aching when pressure is applied or the involved muscles/joints are used. Nociceptive pain will often subside with rest and healing.
Distinguishing between neuropathic and musculoskeletal pain can be difficult, as both can be present and work in tandem, as in trauma to a hypersensitive area.
Treating musculoskeletal pain ranges from PT/exercise to massage and stretching, to alternative treatments such as acupuncture, yoga or biofeedback. Substantial evidence suggests that exercises focused on strengthening and stretching specific shoulder muscles is effective in reducing pain.
General drug protocols for musculoskeletal pain normally progress from acetaminophen to nonsteroidal anti-inflammatory drugs such as ibuprofen, Aleve or aspirin, to opiates such as Vicodin, Percocet or Norco, to “muscle relaxants,” topical agents and corticosteroids. The efficacy of cannabis remains very open to question.
The third leg of pain treatment addresses dealing with the psychological and emotional aspects of pain — how we interpret it, what it means to us, how we deal with it emotionally. Conventional cognitive behavioral approaches employ specific strategies and self-talk to limit focusing on pain — changing how pain is viewed from overwhelming to manageable and learning strategies to counter the catastrophic thinking that often comes with it.
Any rational treatment approach will start with cognitive/behavioral methods as a foundation (see sidebar), followed by drugs, and if necessary, consideration of surgery where appropriate. All therapies must be considered in the context of benefit/risk, and all effective drug and surgical therapies carry risk.
Jon Arnow, 56, of Reno, Nev., L1 incomplete since 2002, has neuropathic pain akin to having everything below the waist in a frying pan, so debilitating that it made work impossible for the first nine years. He spent all his days just trying to get through them. A former otolaryngology specialist, he is now a medical consultant for SSDI eligibility. Refusing to accept that no solution might exist, he pored over medical journals in search of answers. He sampled a broad range of drug therapies as well as acupuncture, massage, biofeedback and other alternatives, constantly balancing side effects with benefits.
“I tried Neurontin three different times but found the side effects — dopiness, fogginess, feeling ‘spaced out’ — intolerable. Instead I use Lyrica, whose side effects subside fairly quickly, along with Elavil, which also helps.” He also cites the importance of distractions such as music, television or reading when all else fails. “When the pain is especially bad, I’ll try to accept it as reality, take an oxycodone, lie down, listen to music and remember that eventually the pain will go away.” He stresses that his regime may not work for others.
“Some people say emphatically that opiates do not work on central neuropathic pain,” says Arnow. “Yet 80 percent of people who use them disagree. Some people get no benefit from Neurontin or Lyrica, while others may benefit from one but not the other. The point is to not give up trying to find what works. People need to be as methodical as possible while understanding there may be no clean conclusions.”
Arnow finds that kayaking and handcycling are very important to him. “While they may exacerbate the pain, they add immensely to my quality of life. A lot of this is simply what gets you through the day.”
Arnow suggests considering online help such as the Pain Forum at Care Cure at Rutgers University where he’s a moderator. “Know there are others going through the same desperate fight.”
Ryan Walters, 26, has dealt with severe back pain since a bundle of plywood fell on him, breaking his neck at C6-7 in late 2005. “My doctors and I are not sure if the pain is musculoskeletal or neuropathic, but I’ve had it from the very beginning. The intensity varies from two to nine on a scale of 10. It’s constant, chronic and quite severe, like hot, burning pins and needles.”
He was prescribed Neurontin and Lyrica. “Both offer relief about a quarter of the time. When the pain got really bad, I was prescribed hydrocodone and more recently Nucynta, which I have taken as often as three times a day. That seemed to treat my mind more than my body and helped distract me.” Walters also takes 80 mg of baclofen for spasticity.
Acupuncture (some with electrical stimulation), cold laser and suction cupping massage offered no relief at all. Massage helped with his upper body but never fully addressed the back pain. Chiropractic adjustments helped some in loosening him up.
“There’s always a compromise between benefits and side effects with drugs,” he offered. “Spasticity and pain meds tend to tire me out physically and mentally and affect my short term memory.”
So what works? “Quad rugby,” Walters says unequivocally. “It doesn’t increase the pain any, has few if any side effects and makes me feel good. Rugby is great exercise and takes my mind off the pain. I try not to take the pain medication before practice or games in order to be physically and mentally alert. If I’ve learned anything over the years, it’s that distraction is the key to dealing with pain.”
Roxy Furlong lives with facioscapulohumeral muscular dystrophy, which affects the skeletal muscles of the face (facio), scapula (scapulo) and upper arms (humeral), the most prevalent form of MD. She says nearly all her muscles are affected. She began using a chair full time about a year ago.
“The pain — mostly in my back, neck and scapula area — feels like a bone bruise. It’s aching and throbbing, as if someone pulled a nerve and snapped it. Sometimes it’s like being poked with a hot pick, or it’s continual throbbing and pressure.”
Because the scapular muscles are so compromised, the weight of her arm caused the scapula to pull away from her thorax, damaging the rotator cuff and causing unbearable pain.
“I had surgery in 2005 to fuse my left scapula to my rib cage and fix the rotator cuff. I still have nerve pain and have less use of my arm, but it’s better than the alternative. Unfortunately, the muscle degeneration coupled with overuse of my right arm is causing the same problem. I can’t deal with another surgery. Recovery was six months in a brace, and I use my right arm for transfers.”
Due to allergies, Furlong has limited drug options and relies primarily on heat and cold, wax wrap baths and a topical potion of clove, birch, coriander and vitamin E, which she says works well. Being gun shy of any drugs, she limits herself to an occasional ibuprofen.
“I’ve tried yoga but didn’t find it helpful. Mostly I try to relax, read or find some distraction from the pain.”
Modesto Chavez of Gresham, Ore., battles phantom pain. “Sometimes it’s burning pain, sometimes like being shocked with electricity, or like constantly wearing socks so tight they’re literally crushing my legs and feet,” he says. “Sometimes the pain pulsates constantly and intensely, lasting for up to three days straight.”
Chavez lost both legs above the knees to blood clots in 2002. It’s believed that after the nerves are cut with amputations, they continue to send signals that the brain interprets as pain, in a way similar to neuropathic SCI pain. “It has progressed down my legs through my ankles to my toes. Now it seems to be ebbing from my toes up. I’ve used Vicodin a lot, but never more than eight in 24 hours. Now I’m using Norco (hydrocodone with less acetaminophen than Vicodin). Occasionally when the pain is really bad, I’ll take some Dilaudid along with the others. The drugs make the pain manageable, but it never goes away.”
He tried acupuncture four days a week for two years but gained little relief, especially when pain would flare up on weekends or the middle of the night. He went to his late wife’s pain management classes, but they did him no good, either. Instead, he relies primarily on a good attitude. “I was a barber for 50 years and heard a lot of stories. In sports I was always told I was coachable. I think I’m just an optimistic guy.”
Vanessa Osman broke her neck in an auto accident 10 years ago. “When it was really bad, I’d just stay in bed all day or keep my power-chair reclined. My neck always ached. I took Percocet and Norco. And I smoked medicinal marijuana for a time, which helped with pain and spasms, but caused me to lose track of time, focus and energy.” Following surgery for a pressure sore she was prescribed Morphine and Dilaudid in addition to the other pain meds. When she began having intermittent burning pain in her elbow and foot, the pain management doc prescribed Neurontin and Nucynta. “We even tried collagen injections, but they wore off after two weeks.”
But she says the best pain management tool she’s found is exercise. “It’s remodeled my posture.” After doing some physical therapy at a rehab hospital, she has been a regular at Northridge Center for Restorative Exercise for 16 months, works with private trainers familiar with disability and uses the NuStep and arm cycles religiously, along with lifting weights while observing her form in a mirror.
“I was able to start decreasing the pain meds within a month, and eventually eliminated most of them under the consult of my doctor,” she says. “I also have had positive results with acupuncture and massage. Taping has helped a great deal. I also use a couple apps on my phone for meditation and breathing. Now I can get by with an Aleve, some heat and tilting my chair.”
“The pain — intense aching combined with sporadic sharp pains — and fatigue were quite overwhelming,” says Herb Tabak, 74, who contracted transverse myelitis at T10 in 2004. Though initially paralyzed, Tabak eventually began walking again, but the price was sciatica-type pain, running down the hip to below the ankle, with no sensation in either foot. “The pain was so bad that I could only walk for about 10 minutes before needing to sit.”
The pain is aggravated by spinal stenosis but subsides after five to 10 minutes of rest. Tabak speculates it is caused primarily by the spinal stenosis, damage from TM, neuropathic effects of paralysis recovery and the side effects of Parkinson’s medications. That’s a lot of variables.
He tried an array of meds ranging from Tylenol to codeine, physical therapy and other solutions, all to little or no avail, before happening upon low level laser therapy (cold laser).
“Although I was very skeptical of the cold laser at first,” he says, “I tried it on my bursitis and it worked! Then I tried it on my hip and it worked.” Using the laser has allowed him to eliminate all medication save an occasional Aleve.
The theory is that the low-level light laser regenerates cells while erasing all memory of pain. The standard treatment involves holding a small, hand-held device near the painful area for four minutes or so two to three times a day. The device is often used on scar tissue. Tabak claims relief within hours.
He says the device’s use is widespread in Canada. As his pain decreased, his skepticism was replaced with so much belief that he invested in the company.
This article was funded by the U. S. Department of Education’s National Institute on Disability and Rehabilitation Research, Grant # H133N0110006. The opinions expressed in this article do not necessarily reflect the opinions of NIDRR.
Reducing Pain Through Distraction
Cognitive behavioral therapy is based on the idea that thoughts dictate emotions and that by carefully monitoring, understanding and reframing thoughts, people can assert more control over their feelings. Distraction is a way to avoid thoughts of pain and the subsequent emotions from filling the mind.
“Everyone experiences pain differently,” says long-time SCI psychologist Lester Butt. “There is a difference between the physical component of pain and the psychological reaction, which can vary from management via constructive strategies to basic psychological suffering. Successful strategies can tone down the severity of how the person experiences the pain. One potentially constructive behavioral technique is distraction.”
Distraction can come in many forms, from music or meditation to reading, running errands or watching TV. A “whatever works” approach makes sense in focusing attention on something other than pain.
Other techniques include learning how thoughts, feelings and behavior affect pain and working to change some of them. Even minor pain reduction becomes self-reinforcing , and a person can change their view of pain from overwhelming to manageable.