Expert Voices: Pain management for people with multiple sclerosis

In this installment of our “Expert Voices” series, Multiple Sclerosis News Today asked Dawn Ehde, PhD, to answer some of your questions about pain management for people with multiple sclerosis.

Ehde is a clinical psychologist and professor of rehabilitation medicine at the University of Washington in Seattle, where she holds the Nancy and Buster Alvord Endowed Professorship in Multiple Sclerosis Research. She conducts randomized controlled trials evaluating cognitive behavioral and mindfulness-based interventions for chronic pain, depression, and fatigue in adults with multiple sclerosis. She is particularly interested in improving access to evidence-based pain care via telehealth and by integrating nonpharmacological interventions for chronic pain into healthcare. She is the editor-in-chief of Rehabilitation Psychology and a section editor of Archives of Physical Medicine and Rehabilitation. She chairs the Psychosocial Wellness Subgroup of the National Multiple Sclerosis Society’s Wellness Research Working Group and is a member of the society’s Medical Advisory Board.

Dawn Ehde, PhD, specializes in pain management for people with multiple sclerosis. (Courtesy of Dawn Ehde)

What are some of the greatest challenges for healthcare providers when treating pain for MS patients?

Chronic pain is multifaceted in MS, arising from a complex interplay of neural (e.g., central nervous system, somatosensory nervous system) and non-neural (e.g., musculoskeletal, psychosocial) factors. The good news is that there are many different options for managing chronic pain that accompanies MS. I see three challenges that, if addressed, could improve pain care and outcomes in the MS community. 

1. People with MS rarely, if ever, have pain as their only symptom. If they have MS and pain, they also likely have fatigue, sleep problems, sensory changes, and/or other symptoms that interfere with their life and require their attention or resources. Similarly, their healthcare provider also has to address their MS disease-modifying treatment as well as many other symptoms and concerns associated with the disease. As a result, pain may be a lower priority or even overlooked, especially if pain is viewed as chronic or untreatable. Pain should be a priority, however, as chronic pain is associated with a wide range of negative effects relevant to MS, including a greater risk of falls, worse fatigue, poor sleep, and poorer mental health.
2. Chronic pain is typically best treated through a combination of approaches tailored to the specific patient, including not only pharmacotherapy but also behavioral interventions (e.g., mindfulness interventions, cognitive behavioral therapy) and appropriate physical activity (e.g., stretching or exercise). MS providers typically recognize the benefits of a tailored, multifaceted approach, but may not have the rehabilitation and psychology specialists in their clinics or communities who can provide such care. 
3. Finally, another challenge is that many people with MS and pain do not have sufficient access to evidence-based pain care, including nonpharmacologic interventions such as cognitive behavioral therapy or physical therapy. This has improved somewhat with increased use of telehealth and with web- and app-based care. However, we still don’t know how to best support patients in accessing these treatments and integrating them in to their daily lives.  

Do you have general pain management advice that you wish more patients or healthcare providers knew about?

1. It is important to focus not just on pain severity (i.e., how much it hurts) but also on functioning, including what activities or roles pain interferes with on a regular basis. Such information can often point to treatment strategies, including rehabilitation and other nonpharmacologic/behavioral strategies, that may reduce pain and increase engagement in the activities and roles that the patient values.
2. Successful chronic pain management involves trying different, or even multiple, strategies or treatments. There are many different treatments and pain management strategies that can improve a person’s function and provide pain relief. They often require that the person with MS and pain adopt new lifestyle habits, such as engaging in regular exercise or physical activity, pacing activities so as to avoid the overdo/underdo spiral, practicing relaxation or mindfulness, getting sufficient sleep, and proactively managing stress or unhelpful habits that can trigger pain or pain flare-ups. 
3. Don’t give up if one strategy does not work. I’ve had patients and providers tell me that they tried or recommended a strategy, such as mindfulness meditation, and it “did not work.” After exploring with them what happened, I frequently learn that they only tried it a couple times or did not know how to apply it to their pain or integrate it into their life. I encourage providers and patients to adopt an experimental approach, knowing that it may take several different treatments to find the right pain management plan.
4. Rehabilitation professionals, including rehabilitation or health psychologists, typically have expertise in treating pain in neurologic conditions such as MS. If available to you, consulting with them may be helpful in developing a pain care plan.
5. There are also many tools that people with MS and pain can do to use on their own to manage pain. My colleagues (University of Michigan and University of Washington) and I developed a toolkit for managing pain, fatigue, and other symptoms common in MS. These evidence-based tools were developed in collaboration with people with MS and pain, who gave us feedback on strategies they use to manage their pain and fatigue. I encourage people with MS and pain to check out the Toolkit or pain resources at the National MS Society.

What considerations should be made in balancing pain medication dependency potential with quality of life?

Recent studies suggest that only 10%–20% of adults with MS and chronic pain report using opioid medications for pain management. If considering opioids for pain, it is important to discuss the risks and benefits with your provider. The goal is to maximize pain relief and function, while minimizing side effects that can make MS symptoms worse, including fatigue, cognition, and mood, or that interfere with quality of life.

Do you consider mindfulness to be an effective method of pain management? Why?

We know from the scientific literature in other pain conditions that mindfulness-based interventions or practices improve pain, including pain severity and pain interference with activities and roles. This evidence, as well as emerging evidence in MS studies, indicates to me that it is one potentially powerful method for reducing pain and its negative consequences in MS. Mindfulness meditation is thought to change how the brain perceives and processes pain, although there is much to learn about how these changes translate to pain in people with MS. Other psychological/behavioral therapies for pain such as CBT and self-hypnosis training are also thought to help pain by changing how the brain processes pain.

Any thoughts on the use of medical marijuana for pain management? 

Like both pain and MS, the use of medical marijuana or cannabis products obtained from dispensaries is complex. I look to Allen Bowling, MD, a neurologist with significant expertise on this topic. He has a helpful guide for MS patients on the effectiveness, safety, and drug interactions of medical marijuana at this link. In this information, he notes that there is good evidence that medical marijuana (research grade) is beneficial for relieving MS-related pain and spasticity. Dr. Bowling also summarizes potential adverse effects, including impaired cognition (including memory, attention, and learning) and the potential risks from contaminants, inaccurate labeling, and the lack of standardized formulations.

Most people with MS, however, use cannabis products obtained from dispensaries or other people, and not medical marijuana obtained from a healthcare provider. For example, my colleagues (Tiffany Braley et al.) and I conducted a survey from December 2019 to January 2020 of less than 1,000 adults with MS from across the United States and found that 42% reported using cannabis/cannabis products in the past year. Of these, 90% reported using it either strictly for medical purposes or for medical  and recreational purposes. The most common symptoms people reported using cannabis for were pain and sleep, and perceived benefits were reported.

However, only 18% of those using cannabis/cannabis products for MS symptoms had discussed cannabis use with their healthcare provider. Most people got their information from their own research or from family or friends. Patients may be reluctant to bring up their cannabis use with their MS providers, particularly in states where it remains illegal. I encourage people with MS and pain wanting more information to talk with a provider and look at the resources provided by Dr. Bowling.

Do you have go-to nonmedication suggestions for people with nerve pain?

First, very few people with MS have neuropathic pain only. In a large study my colleagues and I did characterizing different types of pain (Kratz et al., 2021), we found that only 9% of the sample had neuropathic pain only. Many people with chronic pain and MS have multiple types of pain, including nociceptive pain (e.g., pain secondary to deconditioning/inactivity, muscle spasms, or postural problems) and nociplastic pain (pain due to central nervous system sensitization). Fortunately, the treatments recommended above have also been helpful in people with neuropathic pain or other pain conditions.

Any advice for patients fearful of feeling marginalized when seeking help for their pain?

Feeling stigmatized or marginalized for seeking pain care is all too common for people with chronic pain, especially for people from historically marginalized groups. Keep in mind that pain is not a personal failure, it is the result of a medical condition, in this case MS. Remind yourself that you have a right to receive care that is respectful, and if you are not treated respectfully or your pain taken seriously, consider looking for another provider. There are also tools that may help you in communicating effectively with your healthcare provider about your pain and its negative effects on your life.  For example, keeping one of the logs and completing the preparing for your visit tool may help your provider understand how pain is affecting you and work with you to develop a care plan.

Have you recently come across any research into MS pain that has surprised you? Where is the science of pain headed? 

Scientists in the area of MS and pain are no longer asking if treatments such as exercise, CBT, hypnosis, or mindfulness meditation work; we are now interested in answering how they work and for whom. Thus, we are entering the era of personalized or precision medicine, in which we determine what treatment or combination of treatments are likely to be most effective for a particular individual with pain and MS. Each patient’s preferences should also be taken into account as part of personalized medicine. Tailoring and combining treatments will likely lead to better outcomes for people with MS and pain.

Expert Voices is a monthly series involving a Q&A with an expert in the MS space about a specific topic. These topics and questions are curated from a survey in which we ask readers what they want to learn more about from experts. 

Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.