10 Ways to Beat the Chronic Pain of NMOSD

by Linda Rodgers Health Writer

For people with neuromyelitis optica spectrum disorder (NMOSD), pain can be a constant—about 80% of all NMOSD patients have it. When this autoimmune disorder damages the spinal cord, it leaves behind long, broad lesions, or scars. “The spinal cord is quite unforgiving for damage there. Those sensory pathways get damaged—and then it's hard to fully heal them,” says Eoin P. Flanagan, M.B., B.Ch., a neurologist at the Mayo Clinic in Rochester, MN. When surveyed, 53% of patients with NMOSD rated their pain as moderate to severe, one study found.

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There Are Different Types of NMOSD Pain

One kind is neuropathic pain, when nerves become overexcited as they transfer information from the spinal cord to other parts of the body. “Patients describe it as a tingling, burning, or electrical sensation, that occurs spontaneously, or by touch or stimuli to the skin,” explains Elias S. Sotirchos, M.D., an assistant professor of neurology at Johns Hopkins Medicine in Baltimore. People with NMOSD can also experience spasticity, when muscles tighten and resist being stretched. Another source of pain, says Dr. Sotirchos, is tonic spasms, which are intense muscle contractions that last for a few minutes.

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Anti-Seizure Drugs Can Sometimes Help

“There's no specific pain medication for NMOSD, so we tend to borrow from other fields, primarily antiepileptic medications or antidepressants,” says Jonathan Howard, M.D., associate professor of neurology at NYU Langone Medical Center in New York City, who often recommends a medication called Lyrica (pregabalin) or Neurontin (gabapentin) for his patients. Dr. Flanagan also uses Tegretol (carbamazepine) for spastic and neuropathic pain. These anti-seizure drugs work by affecting the nerve impulses in the spinal cord to reduce the overactive nerve signaling, Dr. Flanagan explains.

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Anti-Depressants Can Relieve Pain, Too

Doctors will also prescribe anti-depressants like Cymbalta (duloxetine) or Elavil (amitriptyline) to ease neuropathic pain. “We don’t fully understand exactly how they work,” admits Dr. Flanagan. One theory is that they can increase neurotransmitters, the chemical messengers in the brain and spinal cord, which may lessen your perception of pain, he explains. Like anti-seizures, anti-depressants don’t always do the trick for people with NMOSD (as they do in MS), studies have found, even though two-thirds of them take more than one type of medication. “The lesions are more destructive and don’t heal as well as MS,” says Dr. Flanagan.

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You Might Be Able to Numb the Ache

Topical numbing agents like Lidoderm (lidocaine) patches or OTC Capzasin P (capsaicin) cream can stop nerves from sending pain signals to provide some relief from the burning, tingling sensations that NMOSD brings. “Lidocaine must be prescribed, and care should be taken with overuse, especially in people with liver, kidney, or heart problems, since some can be absorbed through the skin and can cause side effects, including heart arrhythmias,” warns Dr. Sotirchos. One type of drug doctors typically don't prescribe for neuropathic pain? Opioids (understandably).

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Muscle Relaxants Can Help Ease Stiffness and Pain From Spasticity

“Muscle stiffness can be a big problem,” says Dr. Howard. One muscle relaxant that doctors recommend is Gablofen or Lioresal (baclofen), which come in tablets (usually taken three times a day) or via a pump, which doctors implant permanently in your body. Pumps deliver the medication directly to spinal cord fluid, and may be a good option if the oral meds didn’t provide much relief. “This approach can also cause fewer side effects, like less sedation, and you can get much higher doses,” Dr. Howard notes.

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Acupuncture Can Be a Temporary Fix

“I have a number of patients who feel that acupuncture is of benefit for their pain. Of course, it’s not permanent, and it needs to be repeated,” says Dr. Sotirchos. But, he adds, there are no high-quality, randomized, clinical trials to support the use of acupuncture or any other type of non-pharmaceutical treatment. “However, there are a number of smaller observational, controlled trials that do support the rationale for these treatments, as well as clinical experience,” he explains. Bottom line: Acupuncture and other non-drug treatments have brought relief for some NMOSD patients, so they’re worth a try.

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Or, Try Zapping the Pain Away

TENS machines deliver low-voltage currents via electrodes onto your skin that block nerves from transmitting pain signals to the brain, and some patients have noticed a benefit, says Dr. Sotirchos. Scrambler therapy also uses a device that retrains the brain to not feel pain by sending scrambled electrical signals from areas that hurt the most, replacing pain impulses with non-pain ones. In one study NMOSD patients were able to cut their discomfort in half after 10 days of Scrambler therapy. The caveat: It has to be done by a trained therapist at a clinic and isn’t widely available.

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Get Physical to Help Relieve and Prevent Pain

“We always encourage staying active, and feel that it can potentially help with the pain, so participating in physical therapy and exercise are definitely one of the first things we advise,” says Dr. Sotirchos. Gentle exercise routines like yoga or tai chi can stretch stiff muscles and help control the pain from that. A physical therapist can teach you how to move to avoid wear and tear when spinal cord damage has limited your mobility, Dr. Flanagan explains. Physical therapy is particularly useful after an NMOSD attack to speed recovery, adds Dr. Sotirchos.

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Consider a Pain Rehab Program

These types of programs, that typically last several weeks, use a variety of approaches to improve and control pain, explains Dr. Flanagan. You might be prescribed different medications (like anti-seizures or another type of anti-depressant), and will also learn skills from cognitive behavior and mindfulness to help you cope—or even reframe or accept the pain. Most larger hospitals have them. They’re for anyone who suffers from chronic pain, but the techniques they teach seem to work for NMOSD patients too, Dr. Flanagan says.

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CBD Oil Can Possibly Bring Comfort

“CBD oil can be used in patients to help with their spasticity and stiffness,” says Dr. Flanagan, who adds that it has been approved for patients with multiple sclerosis. “Again, it's always a trial and error. If it helps, then they can remain on it,” he says. That said, some of Dr. Sotirchos’s patients report that CBD products improved both their spasms and neuropathic pain. Another possibility? Medical marijuana (if it’s legal where you live). But using it long-term may bring about cognitive impairment and fatigue, Dr. Sotirchos notes.

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The Newer NMOSD Meds Help Prevent Flares—and More Pain

The goal of just-approved drugs like Enspryng (satralizumab), Soliris (eculizumab), and Uplizna (inebilizumab) is to prevent flares—and they do a great job at it, at least according to clinical trial data. Every relapse brings about greater disability and pain, so if you can avoid future attacks, you reduce the risk of developing more pain with each relapse, says Dr. Flanagan. That’s what researchers from the University of Utah discovered too: Compared to non-relapsing NMOSD patients, those folks who relapsed took more medications, including pain killers—and increased their use 90 days after a relapse.

Linda Rodgers
Meet Our Writer
Linda Rodgers

Linda Rodgers is a former magazine and digital editor turned writer, focusing on health and wellness. She's written for Reader’s Digest, Working Mother, Bottom Line Health, and various other publications. When she's not writing about health, she writes about pets, education, and parenting.