“At some point during the course of their condition, most people with MS will have chronic pain and probably live with it in some form or another,” says Anna Kratz, PhD, associate professor of physical medicine and rehabilitation at Michigan Medicine in Ann Arbor. Chronic pain in people with MS is varied; people with MS have all different types of chronic pain, whether it’s due to their MS or because of another comorbid illness, says Dr. Kratz. “Because there are different kinds of pain, we need to be treating according to what kind of pain it is for it to be effective. For a lot of people with multiple sclerosis, the combination of chronic pain and fatigue can really add to a person’s disability in ways that we’re just starting to understand,” Kratz says. “I can’t tell you how many times I’ve talked to people with MS and they’ll say, ‘My neurologist tells me that the pain I’m experiencing has nothing to do with my MS.’ I think in many cases it’s really hard to know what different kinds of pain are related to. And at the end of the day, it really doesn’t matter if your pain is related to MS or not; it should be addressed by your doctor,” says Kratz. Sometimes people are told by their doctor that pain isn’t a problem in MS, she says, adding “that can be really discouraging and invalidating as a patient.” Often, issues like motor impairment (people’s ability to walk), cognition, vision issues, and sensory changes get most of the attention in MS, so pain can be overlooked, says Kratz. “I think this is due to a lot of factors, but a big part of that is that pain is really hard to treat, but that’s no excuse. People with MS need help with their pain,” she says.
Causes of Chronic Pain in MS
There are three main causes of pain in MS, according to Léorah Freeman, MD, neurologist and assistant professor at the McGovern Medical School at the University of Texas Health Science Center in Houston:
Neuropathic painPain related to spasticityMusculoskeletal pain due to immobility and fatigue
Neuropathic pain, says Dr. Freeman, “is caused by damage to the nerve fibers in the brain and spinal cord from the inflammatory process. And that may cause burning, tingling, and painful pins-and-needles sensations.” Sometimes, people even perceive a light touch as painful in certain areas of the body, according to Freeman. “Some people describe a sunburned feeling. It can be different in different people,” says Anne Cross, MD, professor of neurology and head of the neuroimmunology section at Washington University School of Medicine in St. Louis. “It can sometimes feel deep; it can sometimes feel on the surface.” Spasticity is a common type of stiffness in people with MS that’s caused by damage to motor nerve fibers. Freeman says, “It can cause muscle spasms, cramps, and an overall achiness and tightness in the body parts that are affected. And the spasms can be very painful and debilitating for people with MS.” Finally, immobility and fatigue can cause people with MS to compensate by using other muscles in ways that cause pain. This process commonly causes back or joint pain, says Freeman, even if your underlying mobility issues mainly affect another area of the body.
Drug Treatments for Chronic MS Pain
Neuropathic pain is commonly treated with drugs that were originally developed as anticonvulsants (for seizures) or antidepressants, but they are given at lower doses, according to Freeman. “These medications,” she says, “modify the way the nervous system reacts to the pain on a biological level.” Dr. Cross notes that these drugs include the anticonvulsants Neurontin (gabapentin), Tegretol (carbamazepine), and Dilantin (phenytoin), as well as the tricyclic antidepressant amitriptyline. For spasticity, the drugs baclofen and Zanaflex (tizanidine) can greatly reduce painful cramping and other symptoms. Cross also occasionally prescribes benzodiazepines, like Valium (diazepam), but prefers not to because of the risk of habituation, which is when the brain develops a tolerance to the actions of the drug and eventually needs a higher dose to obtain the same effects. In more severe cases of spasticity, says Freeman, more invasive procedures, like injections of Botox (onabotulinumtoxina) or the placement of a baclofen pump, can directly treat the affected area of the body. Both treatments, she says, can be “truly life changing” in their pain reduction. For musculoskeletal pain related to immobility, Cross tends to start out with mild nonsteroidal anti-inflammatory drugs (NSAIDs), like Aleve (naproxen) and Advil or Motrin (ibuprofen). If these drugs aren’t effective enough, sometimes she’ll try using Flexeril (cyclobenzaprine), a muscle relaxer. “I try my best to avoid any use of narcotics [more commonly called opioids],” says Cross, due to the risk of addiction. Freeman takes the same approach, noting that opioids can also cause constipation and drowsiness.
Exercise and Physical Therapy for MS Pain
Neuropathic pain, says Cross, doesn’t tend to respond much to exercise or physical therapy. But these approaches can work well in many people with spasticity or musculoskeletal pain. “Usually I try to do those in combination with medical therapy,” says Cross. Both Cross and Freeman stress the importance of stretching for people with spasticity. “I find it is essential to encourage people with MS to stretch daily — in particular the muscles that are most affected by the cramps,” says Freeman. Freeman also encourages people with spasticity or musculoskeletal pain to exercise for at least two hours each week, recommending “light walking to more active forms of exercise” like circuit training, in which you move from station to station to complete a sequence of exercises, with no rest time between the exercises. Physical therapy can be especially helpful for musculoskeletal pain, says Cross. “You can sometimes build up the opposing muscles with certain physical therapy maneuvers,” she says, which helps eliminate the root cause of the pain. Freeman says that many of her patients benefit from stretching in the context of yoga classes — light, restorative yoga, rather than more intense variations of the practice. She recommends looking into offerings at a local gym or YMCA, or seeing if the National Multiple Sclerosis Society offers any classes in your area.
Home and Alternative Remedies
For neuropathic pain, Freeman recommends using warm compresses or heated pads on a daily basis. Some people also benefit from pressure socks or gloves. These devices can “trick the brain to make sense of the pain as warmth or pressure instead,” she says. In addition to stretching, good nutrition may help prevent cramps, says Freeman. This means staying hydrated and eating foods rich in potassium and magnesium, like bananas and leafy greens, since “an imbalance of these minerals can result in painful cramps,” she explains. Some people with spasticity or musculoskeletal pain find massage therapy helpful. In fact, a study published in December 2016 in the International Journal of Therapeutic Massage & Bodywork found that in a small group of people with MS, massage therapy once a week for six weeks led to a reduction in self-reported fatigue, pain, and spasticity. Cross notes that some of her patients have tried acupuncture, “particularly for pain that’s hard to control, like neuropathic pain. And some of them feel it’s been helpful.” Another promising approach, says Freeman, is mindfulness or meditation. By focusing your brain on something other than your pain, she says, you may actually reduce pain signals in your brain. It’s also important, Freeman says, to be on the lookout for fatigue and depression, both of which can worsen pain perception. “It is very, very important to discuss these issues and to treat them appropriately,” she says, both medically and also “with more holistic lifestyle modifications.”
Find a Doctor Who Takes Your Chronic Pain Seriously
Although many neurologists are curious and attentive to what kinds of pain you’re experiencing and offer many tools to manage it, that’s not always the case, says Kratz. “Sometimes the doctor who is great at managing your other MS symptoms or finding a disease-modifying medication that works for you isn’t super responsive when it comes to managing chronic pain,” she says. It’s important to have those conversations, and if you hit a dead end, try talking with your primary care provider, says Kratz. “Primary care doctors are often more accustomed to looking at pain from a broader perspective. They may be able to help you explore different avenues, like physical therapy or acupuncture,” she says. Unfortunately, there isn’t a silver bullet that works for all chronic pain problems; you may need to try a few different things, often in combination, to find what works for you, she says. It often takes persistence and advocating for yourself, says Kratz: “That can be especially hard if you are hurting and tired. But remember that you’re not alone. Many people with MS are going through the same struggle. Don’t give up hope.” Additional reporting by Quinn Phillips.
