Living with the Pain of Multiple Sclerosis

One patient's journey to finding alternative treatment options to relieving her pain associated with MS. Plus: how to create a better pain management strategy for yourself.

For many people diagnosed with multiple sclerosis (MS), the chronic pain that often comes with the disease can interfere with daily activities and compromise quality of life. In fact, some people report that neuropathic pain—one type of pain can occur as the result of damage to the nerves caused by the disease—is the most troublesome of all of their MS symptoms, says Julie Fiol, RN, director of MS Information and Resources for the National Multiple Sclerosis Society (NMSS).

Fiol points out that, in addition to extreme physical discomfort, constant pain can also interfere with job responsibilities and relationships, and impact mental health, leading to depression and anxiety and, in some people, even suicidal thoughts.

Managing MS Pain Isn’t a One-Size-Fits-All Approach

Due to the significant impact that pain can have on one’s life, it is important to find the best strategy to find relief. With MS, this can be easier said than done, considering that there is no current cure or FDA-approved medication specifically for the disease. For most people, this means a lot of trial and error go into finding the right combination of medications (for instance, some people use anti-depressants and anti-seizure medications off-label), alternative treatments (such as acupuncture and massage), and self-management strategies (like mindfulness meditation and talk therapy). All of these approaches are commonly used for pain mxanagement and have data to support their efficacy.

Diane's MS Pain Story

Diane Kramer, 35, a medically retired aesthetic nurse, knows first-hand the stress of dealing with MS-related pain and of finding the best way to control it effectively.

“I was diagnosed with relapsing remitting multiple sclerosis in October of 2010,” recalls Diane. She says that her pain typically presents in the form of muscle spasms, often triggered by cold weather, and ranges from“mildly annoying to take-your-breath-away painful.” In the winter months, the spasms used to be as infrequent as once a month to as frequent as occurring daily.

“The spasms occur in my legs and arms, and I also get the dreaded ‘MS Hug,’ where the intercostal muscles (the muscles in between the ribs) lock into spasm. In addition, I get smooth muscle (as opposed to skeletal muscle) spasms that affect my esophagus, causing me to vomit and creating a sensation of not being able to breathe,” she says. 

Diane Kramer's motivation: "Recent research shows that close to 1 million people in the US live with MS. That's 1 million different ways pain is being felt, since it’s truly an individual experience. But, it’s also an opportunity for 1 million different combinations of techniques to manage pain, 1 million connections to others with their own experiences to share, and 1 million lives hopeful for the future of life without MS."

Looking for Better MS Pain Control

Diane’s neurologist had initially prescribed muscle relaxants to manage the spasms, but the drugs didn’t seem to help much. Finally, the neurologist recommended she try something different: acupuncture.

“As a nurse, I just wasn’t sold on how putting a bunch of needles on seemingly random points on my body could be beneficial, but since I trust my neurologist, I agreed to meet with a local doctor who specializes in acupuncture and give it a try,” she says.

Initially, she began going every week or two for 60-minute sessions. Quickly, she began to see results. After more than two years of acupuncture, the benefits have built up significantly and she now goes only once a month to keep her pain under control. “After each session, not only do I feel a sense of well-being, but often I am relaxed enough to nap pain-free through the afternoon,” says Diane. Better yet, she does not need to rely on muscle relaxers or other medications, since her symptoms are now well managed.“I have seen positive changes in my neuralgia (stabbing pain caused by damage to a nerve), especially in my face, since beginning acupuncture,” she says.

Diane undergoing acupuncture for her multiple sclerosis pain.

Turning to Other Alternative Approaches

Recently, Diane also added yoga and gentle stretching to her routine, since these types of exercise can be helpful in relieving MS pain. And she uses a TENS unit at home as needed. This hand-held battery-powered device delivers electrical impulses to the central nervous system to block its transmission of pain signals. The unit also causes the body to produce endorphins, which are natural chemicals that relieve pain (See if you are a candidate for TENS therapy). Overall, Diane points out that this combination of holistic approaches is making a huge difference in her overall pain control, and therefore, her quality of life.

Persistence Pays Off

Diane says that she hopes her example will remind others not to give up. Ever the learner, she adds that, “Recent research shows that close to 1 million people in the US live with MS. That's 1 million different ways pain is being felt, since it’s truly an individual experience. But, it’s also an opportunity for 1 million different combinations of techniques to manage pain, 1 million connections to others with their own experiences to share, and 1 million lives hopeful for the future of life without MS.”

How to Create Your Own Pain Management Strategy

If you have multiple sclerosis and are struggling to manage pain, Nurse Fiol recommends a multi-faceted approach—and an open mind. Here are some of her tips from the NMMS to guide your efforts:

  • Try to home in on the type of pain you experience—how and where is it occurring? It helps to identify the cause of your pain so you can address it in the most appropriate way. For instance, Diane’s major pain point was muscle spasms. She was able to find that spasms respond well to acupuncture. Someone with headaches might find that regular massages coupled with yoga or swimming helps them to relax better.
  • Keep a journal (or use a phone app) to track symptoms. According to Fiol, this type of log “will allow you to track pain trends, identify triggers, and accurately share with your healthcare provider what exactly is going on.” (More gadgets and devices that can help you manage pain at home.)
  • Find a healthcare provider who specializes in MS and can help you make sense of your symptoms within the broader context of the course of the illness. “If you prefer a physician, you will want a neurologist. There are also many very skilled nurse practitioners and physician assistants who are excellent at symptom management, such as pain management,” Fiol says. Try the NMSS healthcare provider search tool to locate a provider in your area.
  • Look for support groups—either in the form of physical gatherings held in your area or virtual  groups that you can participate in online right from home. NMMS can help you find a local support group or connect to one online.
  • Pay attention to triggers that bring on pain, such as grappling with stress; being overtired, worn down, or ill; or getting overheated. Then, make lifestyle modifications to try to minimize the strain on your body.
  • Engage in exercises that strengthen your muscles and also that stretch them to help reduce strain or stiffness that can cause pain.
  • Work with your MS healthcare provider to find a pain management specialist if the interventions you’re trying together are not improving your pain.

Fine-Tune Your Pain Management Strategy

Remember that managing MS pain is a very personal formula and everyone’s experience will be different. “Diane’s journey to finding pain relief shows us that both providers and people with MS need to think creatively and be willing to try some unconventional approaches. What works for one person does not always work for another,” Foil says, adding that by when something isn’t working, you should always talk to your healthcare provider and explore other options that might be more effective.

Updated on: 03/12/20
Continue Reading:
The Link Between Multiple Sclerosis and Pain