For as long as I can remember, more than 40 years, I’ve had a stabbing electrical pain that attacks my left groin when I least expect it. If it weren’t so bothersome, it would be funny. I’ll be cruising through the day, happy as a lark, and ZAP! — I nearly jump out of my wheelchair. If I were a cartoon character, my hair would stand straight up and my eyes would bug out.
Such is the nature of neuropathic pain. It is not like any other. It doesn’t ache or throb or hurt like a bruise or a sore tendon; it acts like an electrical signal gone haywire. Most people who have it describe it as a burning, tingling kind of sensation that is always there. My neuropathic pain is different in that it is mostly quiet, but when it strikes, it can feel like a single jolting electric shock or a series of sharp, stabbing jabs with a sharp-pointed knife. Sometimes it seems to have no explainable cause, but when it becomes strong and repetitive, it is a warning signal telling me I have a UTI, a rash, hemorrhoid irritation, a pressure sore or some other problem. Not a day goes by that I don’t feel it at some time or other.
People with SCI tend to experience neuropathic pain at or below the damaged areas of their spinal cords. Diabetics with severe neuropathy mostly feel it in their lower extremities. The pain is always related to damaged nerves and is a symptom of electrochemical nerve impulses being misdirected, amplified, or electrified. No single painkiller seems to erase it entirely, but there are ways to dampen or dull it —to quiet the constant white noise of pain.
Valerie Bohrman, 28, of Hood River, Oregon, knows about pain, both professionally and personally. She was three months from completing her residency as a nurse anesthetist in 2013 when she sustained a C5 incomplete spinal cord injury in a rollover car accident. Her mother, also a nurse anesthetist, made certain that Valerie was well-medicated for pain during her first two weeks in ICU. But when she emerged into the “real world,” she experienced the full effect of neuropathic pain for the first time.
“The pain is absolutely maddening,” she says. “I can understand how people can go crazy with it. From my shoulders down it felt like thousands of bugs with hot pokers on their legs, marching under my skin. For the most part, my whole body felt this, but different in each area. But it’s worse in my hands, feet, calves, and abdomen.” Since her SCI is incomplete, her neuropathic pain attacks a number of areas below her injury level.
Bohrman routinely takes a very high dose — 4,500 mg/day, three doses of 1,500 mg — of Neurontin (generic name: gabapentin), an antiepilectic medication that is often prescribed for neuropathic pain. She also takes Cymbalta (generic name: duloxetine), an antidepressant, and cannabis. According to a June 2015 study in Pain and Therapy, “Management of Neuropathic Pain Associated with Spinal Cord Injury,” no single drug can eliminate neuropathic pain, but antiepileptic meds, antidepressants, opioids and cannabis are effective in dampening the pain.
Each drug she takes for overall pain relief is important, and for different reasons. Neurontin reduces excitability in her CNS, which lowers her pain intensity to a tolerable level. Cymbalta, an SSRI med, increases norepinephrine, a form of adrenaline that helps overcome pain, and high-CBD cannabis (little or no psychotropic effect), works like a relaxant, which reduces the perception of pain.
“For cannabis, I use a CO2-extracted oil concentrate in a vaporizer for instantaneous relief. It’s a strain called “Herbie,” which is 50 percent CBD and 19 percent THC. It’s my ‘rescue drug.’ If pain ramps up during the day, I take a few puffs and feel it within 30 seconds or a minute. I also use it every night. There’s no cognitive effect, just relaxing, and it helps me sleep better.”
What Triggers Pain, And What Dampens It
While Bohrman’s pain is constant, the severity fluctuates depending on what’s going on in her life. “At certain times, like when I’m stressed, I feel the pain heightened,” she says, “like with a bladder infection. My menstrual cycle and constipation also aggravate it.”
Some people feel different levels of neuropathic pain relative to body positioning or time of day. “The time I feel it the most is at night when I’m sitting still and no other stimulation is going on,” says Bohrman. “On the other hand, it is lessened when I’m using my standing frame and doing stretching exercises.”
Neuropathic pain tends to affect different people in different ways. Arwen Bird, 42, of Portland, Oregon, was injured in 1993 from a burst fracture at T8. She feels her pain ramp up when she exercises. “Especially with swimming,” she says. “It increases the burning sensation, but the endorphins I get from swimming help me manage it.” Unlike Bohrman, when Bird uses a standing frame, her pain level increases. But the pain that comes from exercise seems less bothersome to her because activity keeps her mind focused on something other than pain. “I especially love paddling,” she says. “I’ve found my sport. Being on the water is where I want to be.”
Bird says her pain wasted no time in making itself felt. “I’ve had pain since the moment I was injured. When I woke up, I had this burning sensation in my legs. Like frostbite, when your toes get so cold they feel like they start to burn. It is constant.”
There is no consensus about the incidence of neuropathic pain, but a recent study estimates as many as 40 percent of people with SCI experience it. In the beginning, Bird says she thought the pain was something that came with SCI and she would just have to bear it. But in 2012, she experienced a level of pain from a simple cut that overwhelmed her, so she started taking Neurontin, like Bohrman. Up until that time she would treat non-neuropathic pain (musculoskeletal pain) with opioids like Vicodin or Oxycontin. “That gave me a little relief from the neuropathic pain as well, but now that I take Neurontin, I can feel that it does a better job.” She takes a lighter dose than Bohrman, 900 mg three times/day, for a total of no more than 2,700 mg/day.
As for using high-CBD cannabis for pain relief, she doesn’t like the effect of feeling groggy. “I feel like I can’t connect with the people around me. I tried some and it does help. But it’s not social and functional for me.”
Bird sees a pain specialist regularly, an anesthesiologist. “I also see his physician’s assistant. It helps to have a relationship with someone who knows me and knows what kind of pain I have. Most people don’t understand neuropathic pain, and sometimes they don’t believe you when you try to explain it.”
Tracking the cause of a spike in neuropathic pain can be like detective work. Often there is no clear specific location to pinpoint, but when the pain ramps up, there is usually a reason. “Definitely UTIs will aggravate it,” says Bird. “And when the weather gets really dry, I find my pain increases. Humidity feels better. It’s like my body ‘reads’ the larger environment.”
Bird is learning that one of the most important things you can do to dampen pain is to concentrate on what brings you joy. “I’ve started to learn how to play the piano. There is a meditative quality to it. Just following the notes and moving my fingers, it’s like I can almost feel the neurons firing in my brain, and I just keep moving through it, whether I understand it or not. I try to employ that a lot in my life. I’ve started hanging out with friends who are involved with climate science, and the challenge for me to keep up with these smartypants people is enjoyable.”
So are simple pleasures, like gardening in raised beds, tending her plants, and watching and listening to all the different types of birds who come to her back yard, which is adjacent to a green space. “If I had one piece of advice to give someone who is navigating through pain,” she says, “I would say go outside and observe nature and all the living things and reflect on it, breathe in some fresh air. And go hug a tree! It really does make a difference.”
Having an Action Plan
Matt Patterson, Sr., 64, of Astoria, Oregon, experiences neuropathic pain due to stenosis of his spinal cord that began unnoticed after an undiagnosed traumatic injury. Technically speaking, he is not paralyzed, but damage to his spinal cord has occurred at the C5-6 level. “There was no obvious injury, but any number of incidents could have caused it over a period of time. Then came calcification of the spine, which restricted the spinal column and made the cord get smaller and smaller.”
He wears a knee-ankle foot orthotic on his right leg and has no feeling in his hands due to the stenosis, and not much feeling in his legs. He also has clonus all over his body — a big muscle group fights against a small muscle group, causing a kind of shivering. “That’s what it looks like to an onlooker,” he says, “but I don’t feel it. It’s a fast shiver, happens four to eight times per second, more on my right side than my left.”
Patterson describes his pain as pins-and-needles from his wrists to his fingers. Sometimes it shoots all the way up to his elbows and shoulders. “It’s a burning, tingling pain,” he says, “kind of like when your hand falls asleep and you start to regain feeling, but it is a burning sensation.”
Like Bohrman and Bird, Patterson’s pain never goes away, and he also takes Neurontin to keep it at a manageable level. “On a pain scale of 10, it goes down to a three if I stay busy and active, and when it stays at that level, you can forget it for a while,” he says. But it can shoot up to a seven.
“Today I went outside to get in my van and go pick up my daughter, and I forgot to put my gloves on. My hands get cold and the pain goes up. Or just resting my arm on the armrest can trigger it. Pressure at a joint can do it. For me, infection is not a problem (he does not have a neurogenic bladder), but I have a hypersensitivity to touch and cold.”
He credits his ability to manage his pain to having a four-step action plan. “Number one is to be sure and take my meds. I take Neurontin at a dose of 1,200 mg three times/day. If I am only two hours late in taking it, I will know it immediately. I need them, and I’ll pay for it if I don’t take them.”
Number two on his action plan is to focus on staying active mentally and physically. “I play chess and read, and listening to music helps. It’s easier to dwell on the pain than to think of something else. It takes effort to stay focused on something else, because the pain never goes away.”
Number three is to know what causes a pain spike, then fix it. “You’ve got to search out the cause,” he says. “I’ve got to stay away from cold, stay warm, stay active. And I take classes — Living Well with Chronic Pain — that kind of thing.”
Number four? Have a sense of humor. “I have to, with six kids,” he says. I was married and had three kids, my wife died, I remarried and now I have six. Just one living at home now.”
Going Without Meds
Tom Wolford, 60, from Roseburg, Oregon, says he had neuropathic pain from the beginning after his C6-7 injury, but when he was offered a pain med, he refused. “I didn’t want to get addicted to it,” he says. He also describes his pain as a burning, tingling sensation that fluctuates in intensity. “Sometimes it’s bad. It goes from a three to a seven and then I have a hard time sleeping. I feel the pain from my nipples on down.”
Sometimes one or two aspirin and a shot of alcohol will help calm the pain. “Usually I’ll have whiskey with coffee, or I’ll take a shot or two and chase it with Pepsi or 7-Up. I do that whenever I need it. Not every single night, just when I need it. If I get stressed out, like getting in an argument, it gets worse.”
Wolford takes 1,200 mg/day of gabapentin, but unlike the others in this story who take it for pain, he says his doctor prescribed it for spasms. I mentioned to him that others take two or three times that dose for pain and asked if he thought that might help his pain. “I would rather get the dose down,” he said. “I’d like to take less if possible.”
Like others I interviewed for this story, Wolford stresses the importance of staying busy to distract from the pain. “I like to do research on the Internet,” he says. “I’m kind of a tinkerer-inventor. And I love driving out in the woods and making the rounds. I really like in the summertime to go into the high lakes and streams. I used to work on a survey crew, so I’ve always liked being in the woods.”
What about cannabis? “I tried it a lot when I was younger, and I don’t want to do that now,” he says. “I know about high-CBD marijuana but I don’t trust it. If I smoke that stuff, you might as well put a dust pad on me and set me in a corner,” he says.
I have learned while researching this story that while neuropathic pain is manageable, each person has to find their personal way of dealing with it.
When I woke in ICU following my plane crash, I could not sleep at night due to the burning, tingling sensation, and I thought I was losing my mind. Morphine took my mind off it in the hospital, and I self-medicated with alcohol and marijuana for 20 years after that. In 1986 I stopped using marijuana and only drank at night, but not every night. Like Tom Wolford, I got used to the pain, but lately the severity of the stabbing knife in my groin, when it attacks, makes me turn to opioids (hydrocodone with acetaminophen) for relief.
Hydrocodone helps, but the delayed side effect of constipation also triggers the stabbing knife, so it cuts both ways. Just in the last month I have tried a cannabis edible, dark chocolate, with high-CBD content. It also helps, but at the modest dose I have tried, it is mainly a relaxant that only slightly dampens the pain.
I am not through searching and experimenting. I plan on taking Bohrman’s advice: “Patience and persistence is essential. It takes time to find the right combo/cocktail. If it isn’t working right, be persistent with doctors about trying something else.”
And there is always Plan B: More music.
• “Management of Neuropathic Pain Associated with Spinal Cord Injury,” Pain and Therapy, June 2015: www.ncbi.nlm.nih.gov/pmc/articles/PMC4470971/#CR69
• “Pharmacological Management of Neuropathic Pain Following Spinal Cord Injury,” CNS Drugs, 2008: www.ncbi.nlm.nih.gov/pubmed/18484790
• Living a Healthy Life With Chronic Pain, Bell Publishing Co., Boulder, Colorado: 2015; also available at Amazon.com.
What is Neuropathic Pain?
The following was paraphrased from WebMD’s article, “Pain Management: Central Pain Syndrome”
Central pain syndrome, sometimes called neuropathic pain, is caused by dysfunction of the central nervous system, which includes the brain, brainstem, and spinal cord. The disorder is most often caused by strokes, multiple sclerosis, Parkinson’s disease, brain injuries and brain tumors, and spinal cord injuries. It may occur soon after damage to the CNS or months or years later.
This type of pain is characterized by a number of different painful sensations but most often is felt as a constant burning sensation that can be amplified by light touch. It can also increase with temperature changes, most commonly brought on by cold temperatures. The pain can be mixed with a loss of sensation, such as numbness or tingling, and is most prominently felt in the hands and feet, especially the lower extremities. Occasionally, it can be experienced as brief, repetitive, intolerable bursts of sharp, “electrical” pain.
Pain medications provide at best partial relief. However, those medications that have been found to be most effective are anticonvulsants (antiepileptics), and antidepressants, or combinations of different medications.