Combating chronic pain in people living with neuromuscular disease requires a multifaceted approach
It is not breaking news to people with neuromuscular disease that combating pain can be a substantial part of daily life. Unfortunately, chronic pain is a complex symptom to manage, and it may be far more pervasive in neuromuscular diseases than originally thought.
“When I started out, about 25 years ago now, there was nothing,” says Gregory Carter, a doctor who specializes in physical medicine and rehabilitation. He also serves as medical director of St. Luke’s Rehabilitation Institute and is a former director of the MDA clinic in Olympia, Wash.
“If you opened up a textbook on muscular dystrophy or ALS … these types of neuromuscular diseases were not described as having ‘pain.’”
Although things have changed since then, says Carter, pain is still often under-diagnosed and treatment is often overlooked. So how can someone with chronic pain from neuromuscular disease find the help and relief they need? The answer isn’t simple, but understanding why pain happens with these types of diseases — and why a multifaceted approach to managing it may be needed — is a good start.
Complex and multifactorial
“Pain can really be complex and multifactorial,” says Nazem Atassi, a physician and an expert in amyotrophic lateral sclerosis (ALS), who serves as an assistant professor of neurology at Harvard Medical School. In neuromuscular disease, there can be multiple sources of pain, each very different, and each causing a particular type of discomfort.
For example, loss of muscle can result in pain from overuse of, or inflammation in, healthier muscles, as they try to compensate for weakness. Weak muscles also can lead to increased strain, or stress, on joints.
Lack of mobility often can contribute to pain as well, especially if a person spends a lot of time in a wheelchair or in bed, which can lead to excessive pressure on bony areas and to freezing of joints in one position (contractures).
People who have a neuromuscular disease that affects their breathing muscles, resulting in reduced respiratory function — including ALS, SMA, DMD and myotonic muscular dystrophy (MMD, or DM) — may have severe morning headaches due to a drop in breathing capacity. Those with Charcot-Marie-Tooth disease (CMT) may experience burning, tingling pain in the hands and feet.
Beyond the physical
An additional challenge with chronic pain is that its consequences are not just physical. Quality of life and mental health issues, such as depression, insomnia and an increased feeling of isolation often come into play.
“When I’m having a lot of pain, I don’t really have time for making new friends, because I’m not out and about,” says Jennifer Sibley, who was diagnosed as a manifesting carrier of Duchenne muscular dystrophy (DMD) in 2008. (DMD mostly affects males, but female carriers sometimes have symptoms and are referred to as “manifesting carriers” of DMD.)
For Amy Venters, a single mom living with facioscapulohumeral muscular dystrophy (FSHD), pain affects how well she can cope with the demands of parenting and her disease: “Our entire life is based around how I feel. It can be very frustrating.”
All these factors mean that combating chronic pain in neuromuscular disease is a complex endeavor, and relief may need to come from multiple sources. That may mean physical therapy, medication and stress relief or focusing techniques — or a combination of all three.
“A physical therapist is going to do detailed testing of strength, flexibility and function to not only treat the pain, but to find out what’s causing the pain,” says Wendy King, a registered physical therapist who also serves as a clinical associate professor in the department of neurology at the Ohio State University’s Wexner Medical Center.
Physical agents such as heat or cold, compression, stretching, exercise techniques, different postures, and sometimes bracing or support can help pain, she says. Aquatic
therapy also can be especially useful.
“There are motions that folks can do in the water that are impossible for them to do on land,” says King. Weight gain, ill-fitting mobility equipment and repetitive motion also are factors a physical therapist might address in order to alleviate discomfort.
Along with physical therapy, medications ranging from muscle relaxers to anti-inflammatories, and even drugs such as antidepressants for peripheral neuropathy pain, can be an effective part of chronic pain management. Stronger drugs, such as narcotics and opioids also can be used, but they sometimes come with unwanted side effects, such as grogginess. (Note: Be sure to consult with your physician and MDA clinic team before beginning any kind of medication or drug therapy.)
“It’s a trade-off,” says Lori Hastings, a mother and grandmother diagnosed with both limb-girdle muscular dystrophy (LGMD) and myasthenia gravis (MG). “Sometimes, if my grandkids are coming over, I choose to skip the medication so I can really be present.”
Mental health support and relaxation or distraction tools can be a solution, too, especially when medication is not effective or not an option. Techniques such as biofeedback, meditation and aromatherapy can offer some relief, as can taking part in support groups or connecting with friends and family.
Even something as simple as journaling can help, says Jared Newsome, who has SMA and has been hospitalized multiple times for the pain from his muscle spasms. “When I am down, I can look back at the good days. I can see what works and what doesn’t,” he says.
The good news is multiple effective options are available to control pain. But the key, as Atassi says, is “to figure out which options fit best with which type of pain.”
When traditional treatments don’t work
Even with the tools already on the table, however, managing chronic pain can still be an issue.
Robin Cannon faces this challenge with her young son, Connor, who was diagnosed with an unspecified form of muscular dystrophy as an infant. Multiple surgeries along with pain from Connor’s disease meant that Robin had to explore numerous ways to help him cope, a hard battle with a child.
“When you have a 6-year-old with pain, you can’t just tell him to meditate,” she says. Fortunately, laser therapy (directing concentrated light on areas where there is pain) proved effective, after numerous tries with more common medications and therapies.
So where can you go when you’ve tried everything? The truth is, more answers can only come with more research. Physician Greg Carter sees strong, evidence-based opportunities with cannabinoid-based therapy, which would take advantage of the pain-relieving properties of cannabis without the intoxicating effects.
Genetic and biological research could lead to big breakthroughs, and new drugs on the horizon could offer hope.
In the meantime, though, for those living with chronic pain, a last tool to rely on may simply be attitude. “Pain doesn’t have to guide your life,” says Jennifer Sibley. “Even though there are days when you feel like you can’t do it anymore, there’s light at the end of the tunnel. I believe that’s true, and I live that.”
Finding the Right Help for Pain
For people with chronic pain from neuromuscular disease, simply finding the right professionals can be a challenge.
“Physicians like myself do the best we can in pain management, but we are not necessarily experts when management gets beyond the basic medications,” says Michael Shy, co-director of the MDA Clinic at the University of Iowa.
If you need help getting better relief, talk to your doctor about enlisting the help of a pain expert.
You also can learn more about pain and muscle disease by reading Pain in Neuromuscular Disease: Who Knew?
For some living with chronic pain due to muscle disease, connecting with sympathetic friends, like those found in an MDA support group, is a source of relief and comfort. To find support group resources in your area, visit mda.org/services/finding-support/support-groups. And stay connected to other MDA families and friends by visiting MDA’s Facebook and Twitter pages.
Amanda Dobbs is a freelance writer and editor in Atlanta.