Living with MS pain, the uninvited guest you can’t turn away
Listening to your body is key to accommodating this unwanted lodger
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Pain and I are well acquainted. I would not go so far as to say we are friends, but we do see each other every day. It isn’t always first thing in the morning; sometimes it’s midafternoon, right after I think to myself, “Wow, pain hasn’t shown up at my doorstep today.” Or it arrives right before I tuck myself into bed at night.
I don’t love the relationship that we share, but with multiple sclerosis (MS), body pain has a way of showing up uninvited and overstaying its welcome. Sometimes it’s subtle, like a low hum in the background. Other times, it’s loud enough to derail whatever plans I thought I had.
The thing about MS pain is that it’s rarely straightforward. It doesn’t always match what I did the day before, and it definitely doesn’t follow a schedule. I can go to bed feeling (mostly) fine and wake up sore, stiff, or aching in ways that don’t make much sense. Sometimes I blame my mattress, but I know that is not the case.
What makes it harder isn’t just the pain; it’s figuring out how to live around it. Every day comes with a mental check-in: How bad is it today? What can I realistically do? What’s worth pushing, and what’s not? There’s a quiet fatigue that comes from constantly negotiating with my own body. It is hard to live and feel comfortable in my body.
Pain won’t be ignored
I used to think I had to power through it and ignore the pain, even downplay how bad it could get. I would sometimes pretend it wasn’t there so I wouldn’t seem “dramatic” or “difficult.” Spoiler: That didn’t work because it just left me more exhausted and more frustrated. These days, I try something radical: I listen. If my body is asking for rest, I stop arguing. If it’s a painful day, I adjust my expectations instead of punishing myself for not meeting them — and it is still easier said than done.
That doesn’t mean I’ve made peace with pain. I still get annoyed when it slows me down or changes my plans. I still miss the version of my body that didn’t require so much thought, but I’ve learned that beating myself up only adds another layer of discomfort I don’t need.
Pain has reshaped how I think about strength because it isn’t pretending everything is fine. It’s saying, “Today hurts,” and continuing anyway, just at a different pace. It’s finding small things that help, even if they don’t fix everything. This includes heat packs, stretching, sitting instead of standing, warm baths and showers, cooling patches, and even simply letting myself rest without turning it into a moral failure.
Living with MS-related body pain has made me more honest, more patient, and a lot less interested in performing wellness for other people’s comfort. My body hurts sometimes, even most of the time, and that’s just part of my reality. And even on those days, I’m still here, still adapting, still moving forward, just maybe a little slower, and with a lot more self-compassion than I used to have. Maybe one day, in an ideal and highly unlikely future, pain and I will be distant acquaintances, only seeing each other during a blue moon.
Note: 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. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Jane Cole-Hamilton
Thank you. Two things I found helpful: labeling pain as a sensation not PAIN This removes the emotional element. The second is imagining the ME in my head is floating way above the pain,which is grinding away below. Look forward me articles by you=
Annette
Hi. What does your pain feel like? I’ve always had it but it’s been more consistent now. A burning pain/sensation in my legs. It seems to get worse at night.
Lisa Bowser
Thank you for your article. I have pay every day too. Always in different degrees, but it's always lurking around the corner. Recently, my leg pain has gotten worse, and my back pain. It's not your average pain. We, as MS sufferers, know the difference. The super cold temperatures have not been helping. I always forget what season is hardest for me, summer or winter. Last summer, I could have sworn it was Summer, but this Winter, I'm now voting for Winter to be the worst of my seasons. My family asks me all the time how I'm feeling, and I'm not a natural complainer so unless I'm really miserable I usually just say "okay". There are days I want to cry, and then days I get through it with a smile. I'm always grateful though, knowing someone else has it much worse somewhere else. I have okay days, and bad days. Never really good days anymore, and definitely not great days. Since moving into secondary progressive, I definitely am aware I have MS. I can now relate to articles like your own. I started out with relapsing-remitting and couldn't really relate to others who didn't feel well. I felt pretty great and would sometimes forget I had MS, probably for the first 16 years. I have had MS now for 25 years, and it has most definitely made itself known. I have slowed down considerably. I can make it by putting on a sometimes pretend smile until around 2 pm, and then I go slowly downhill. At this very moment, my back hurts and my MS hug is relentless and it's only 3:30 in the afternoon. I still have an hour of work until I can go home and put the heating pad on all of my hurts. The heating pad has been such Godsend for me. I do 15 minute intervals on my back and my leg. I'm always cold so I have never gone the way of cold treatments. Though in the Summer, that is a tempting thought. Stay blessed and continue to be a blessing through your writing. Thanks again.
Sally
This article just hit the nail on the head as far as describing my MS pain and how I need to deal with it and try to deal with it. Very well written. Sometimes I can fight the pain, most of the time I just need to deal with it. The elder I get the more it seems to rear it’s ugly head. I will keep fighting through it.
Elizabeth Perazza
Is a description of my new life style after the diagnosis of MS . This narrative is a snapshot of the pain and daily struggle associated with this illness. I really hope that soon a remyelinating agent will be available for us to restore our damaged CNS . It will also eradicate many chronic diseases . Keep strong we will surpass this 💪🏻
Cheri Underhill
Just a quick word to you Desiree that your column really resonated with me, and brought a bit of comfort because of that. I found myself nodding in complete agreement with your observation that "There’s a quiet fatigue that comes from constantly negotiating with my own body. It is hard to live and feel comfortable in my body." Spot on, I thought. And you offer good reminders for ways to cope and endure with our challenges. So, thank you. All best, Cheri.