What’s in My Toolbox for Managing MS Pain?

A variety of products and practices help keep my MS pain in check.

Physical pain, unfortunately, is something that no one is immune to. Back in the 1990s, the band R.E.M. reminded us that we all get hurt, and though I suspect they were singing about emotional pain, it’s true: “Everybody hurts … sometimes.”

For people with multiple sclerosis (MS), the word “sometimes” may be problematic if they experience pain frequently. When you feel pain more days than not — or worse, experience it chronically — it can be debilitating, impinging on your freedom, agency, and joy.

My experience with MS-related pain is somewhere in the middle of sometimes and chronic, and while I wish I didn’t experience pain, I’m happy to share a few things that have helped me manage it.

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Ask your doctor(s) and see what works

While my knowledge of actual tools is as limited as differentiating between a flathead screwdriver and a Phillips-head screwdriver, I’m much more confident about my knowledge of treatment options for physical pain due to firsthand experience. Here are a few tools in my toolbox:

• Gabapentin: After a particularly intense MS attack left me with lingering pain that ranged from a dull throb to a piercing stab, I asked my doctor what might help me. He prescribed me gabapentin for the first time, which helped significantly. I took it for several months but as I healed, I wanted to see if I still needed it or not. I tolerated it well, but as the number of medications and supplements I take has grown over the years, I prefer not to take something if it’s no longer necessary, so I consulted with my doctor to discuss how I could manage without it.
• THC-infused topical creams: I’ve been using a THC-infused topical cream for over a year now, and while it doesn’t alleviate nerve pain in my spine and neck, it does relax the muscles around my personal pain trifecta of MS lesions, arthritis, and degenerative disc disease, which helps considerably.
• Massage guns: These easy-to-find tools also help relieve muscle pain (my muscles tend to tense up around whatever area is painful). I bought one on a whim during a sale, and believe me, it’s worth the full price.
• Stretching: Finally, whether I’m stretching gently on my own or taking a class at my local exercise studio, I’ve noticed that engaging the muscles and areas that give me pain can actually help them feel better when I work them, rather than letting them lie dormant.

Everything in this list is personal and changes case by case; nothing is one-size-fits-all, which is an apt description of MS in general.

Take note of pain, literally

I’ve gotten in the habit of tracking my days. I am notoriously unorganized, and for years I wanted to be like my husband who painstakingly creates his own tiny calendars, cuts and pastes each one into a Moleskine notebook, and tracks things like how many miles he’s run, movies he’s watched and books he’s read, and how his mental health is doing. He has a simple system: a plus sign for a good day and a minus sign for a bad day.

I’ve finally started doing the same thing, but with an app. I needed something easy to use and that didn’t take much time. I simply click on emojis that I’ve customized to mean things like sleep quality, exercise, fatigue, pain, and mood to chart what a given day was like. I’m 8 years into my MS journey and I’ve just recently started this in the past few months. It has been so helpful.

Now, when I see my doctor, I can easily see patterns instead of being dependent on something as unreliable as my memory when answering questions about symptoms. More than that, I have actual data collected to see if I’ve had pain that lasts longer than is typical for me.

If you have MS, you’re accustomed to knowing what “your normal” is, so it’s helpful to see when pain or fatigue is extraordinary. Of course, sometimes pain screams for attention — no data collection needed. In early 2019, I was in such pain from my very first spinal lesions. I had to lay flat in bed or else I’d literally cry out loudly and spasm from the severity of pain. I imagined my nerves, frayed or fried or whatever, holding little megaphones and shrieking at the top of their lungs. If they had lungs, of course.

Be smart, be choosy

Not all pain is created equal. When I have a headache, I do the things that I know help me. Rest, darkness, cold compress, maybe the smell of mint, and some ibuprofen. If at all possible, what I don’t do is any activity that will prolong or exacerbate my headache.

I adhere to the same principle for MS-related pain. When my neck and spine pain acts up, I might need to take time off from my beloved Barre3 classes, or at the very least, I may need to modify some of the poses. I remember having a particularly intense bout of Lhermitte’s sign (that electric zing that goes down the spine) and couldn’t do a sun salutation for months. It stinks, but I’ve learned to adapt, and I try to remain focused on what my body can do rather than be bitter about what it can’t.

The takeaway

Pain sucks, but we are not without help and support. With a little bit of observation, smarts, and professional care, I hope we all can learn what works best for our own bodies as we navigate pain in a brutal yet beautiful world. Of course, if all else fails, maybe curate a playlist of pain-related songs to listen to on the couch with a warm cup of cocoa. Might I suggest a certain track from R.E.M.?