Who says MS doesn’t hurt?

3 main tools help me manage my multiple sclerosis pain

by Ed Tobias | August 11, 2023

Multiple sclerosis (MS) is a pain in my butt — and other places, too.

It hasn’t always been that way. For many years post-diagnosis, I didn’t notice much pain. But of the 43 years I’ve lived with MS, it’s hurt for the past 15. Usually, it’s just a dull ache in my lower back. I can also have a similar pain in my hips and butt. Once in a while, I get a very painful cramp in my lower left leg. The worst is when a shooting pain starts in my left hip and runs down my leg all the way to my foot. It can be so intense that my leg buckles. Yes, MS can hurt!

I’m not alone. I often read comments about pain on the MS News Today Facebook page. Yet some people complain that their doctor doesn’t associate MS with pain. That, understandably, can be a problem when seeking treatment.

MS news notes: 10-minute Ocrevus injection, NfL blood test, optic nerve

MS pain can be ‘ubiquitous’

A study published online last month in Multiple Sclerosis Journal – Experimental, Translational and Clinical may help educate some of the medical professionals who think MS is painless. Of the 231 people surveyed — 161 with relapsing-remitting MS and 70 with progressive MS — 95% reported they suffered some level of pain, 38% reported their pain was greater than mild, and 87% reported their pain limited some of their activities.

“Pain was nearly ubiquitous,” the researchers wrote, and it made no difference whether the person was living with relapsing-remitting or progressive multiple sclerosis.

How I treat my pain

It’s tough to pin down the sources of my pain. It may be due to nerve damage, my weak leg and core muscles from all the sitting I do, or the abnormal stress I place on parts of my body when I do walk because of my abnormal MS gait. Honestly, sitting at the keyboard as much as I do doesn’t help, but I gotta do what I gotta do, and a new desk chair has just arrived.

It’s also tough to pin down a treatment for multiple sclerosis pain. After years of trial and error, I’ve found three things that help me: gabapentin, physical therapy, and exercise. Gabapentin is an oral seizure medication that’s also used to treat restless leg syndrome. It’s used off-label to treat MS nerve pain and spasticity. I find that it helps with both. Physical therapy helps stretch and strengthen my legs and improve my core muscles. Exercise in a gym with a personal trainer has done much the same as physical therapy. In fact, I think it helps me more. Swimming and pool walking also play a part in my pain-relief program. But all of these activities must be done regularly to be effective.

I’m not a healthcare professional, and MS affects people differently, so I’m not prescribing any of these things for you. But if a doctor ever tells you that MS isn’t painful, you now have a few tools you can discuss with them.

You’re invited to visit my personal blog at www.themswire.com.

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.

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About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Kit Minden

Pain is frustrating - what I eat impacts it, how much I work/sleep/exercise, cannabis oil on leg spams, mag oil, vitamins... constant struggle.

Ed Tobias

Hi Kit,

Yep, there are a lot of ways to try to manage our pain but nothing that totally relieves it. I'm glad you've found a few different ways to attack it.

Donna Reeves

My MS pain is mostly the MS "hug". It hurts my back just below my bra strap. It can cause me to double over and can strike suddenly. It tends to remain sore for a while. I generally just put up with it.

Ed Tobias

Hi Donna,

I've heard from others that the hug can be the worst. In fact, I wrote a column a while ago about that. https://multiplesclerosisnewstoday.com/columns/2022/11/18/ms-hug-frightening-embrace-youd-rather-not-have/ People handle the hug in various ways and there doesn't seem to be any, single successful method that helps anyone. Just another example of how MS treats us all a bit differently.

June Patricia Turnbull

I have found that MY MS can be absolutely horrendously painful....I recently broke three ribs after a fall and everything they recommended I take for the pain I was already taking for the MS pain....sometimes I do believe that no one could be in as much pain as I was feeling.

Ed Tobias

Hi June,

I'm sorry about all of that pain and I've heard that broken ribs can be really though in that area. I hope that the pain will improve as they heal.

NICKIE JAKOBSEN

I was 54 when diagnosed with MS and I’m 56 now and it’s a daily thing trying to manage pain.

This was a great article and I felt like I had written it. BUT I would have emphasized the pain more. Seems like as soon as I was diagnosed, the pain hit me like a truck that continues to roll over my body down various paths each day. When I was diagnosed with Relapsing Remitting, I was relieved as I thought once I got through the dose of steroids to calm my body down, then with my DMT, Tecfidera, and Gabapentin, for pain, I would be good to go.

But MS doesn’t work that way!

When I returned to work it progressed to the extreme. Sometimes driving for long periods, sitting in my chair then standing at my desk. My neck, my wrist, my shoulder (then it froze), my lower back and hips and my feet would throw me into nightly agonies that continued progress enough to effect my quality of off-work life (at one point, there was "no quality" as it was all about taking the two weekend days to get ready for the agony to start again for the next five). My work told me to “take a 12 week leave and ‘get better’”… As If!!! But there was no time for work and exercise (doing all the ergonomic things and stretches throughout the day... didn't bridge the gap)!

Now that I’m not working, if I’m not in the pool daily doing both swimming and aerobics for a focused hour along with the cool down of wiggling-it-out, floating and working breathing, I’m worse and can’t sleep decently at night. Walking distances, as I love to do from a pre-MS hiker perspective, my gait, calves, and my toes are now strangely affected, and it tends to throw the left side of my body from shoulder through buttocks through thigh and calf into the edge of foot into throbbing pains when I try to sleep. By the time I can get into see my doctor, all this has receded into the background.

Managing this roadmap of pain by balancing the exercises and medication we take to alleviate is now a day to day job to stay healthy and remain active. Staying active is absolutely the key to managing the pain! I would strongly recommend to everyone to find their "active" sweet spot and stay ahead of the pain spiral!

Ed Tobias

Hi Nickie,

Thanks for sharing all of this. It sounds as if you're doing some things that help but don't last. But, they all seem to be self-directed. Have you thought about asking your neuro for a physical therapy referral? I'm seeing my PT this afternoon for some stretching, core exercising and sciatic nerve massage. It doesn't make it all go away but it does help.

Rob Hruska

I have severe sciatica because of the muscle imbalances and the misalignment of my pelvis caused by ms weakness on my left side. I am still working to manage it. My left side also has ms spasms the pull on the pelvic region and trigger the sciatic pain. This pain can reach 10/10 in intensity and is a major source of my depression and has real causes me to question my will to live. I try and use some message and some exercise but the exercise really flare up my spasms and in turn my pain. So it is very frustrating as exercise uses to be a big part of my life and now i have lost a load of muscle because i can exercise and don’t feel like eating because of the narcotics. I am go to switch to gaba. Everything is worse at night and sleep is alway a challenge. Dr don’t seem to know what to do about it because it doesn’t fit into their standard mold. It would be nice to find a dr that isn’t afraid to think for them selves truly try and help but unless it fits into there standard box for this type of pain no one seems to want to help. They say they do but i have yet to have one spend 5 minutes trying to help solve the problem. This condition which is not ms but is causes by my ms is more debilitating than the ms itself.

Nancy

Hi Rob
Like you I have left sided leg / muscle issues due to my MS. This results in weakness of the left side and rotation of my pelvis with some sciatic type pain in my right buttock.
For the last 10 years or so I have found chiropractic care to be the main thing that helps with this. I have a good chiropractor who realigns my pelvis probably every 10 days or so. This allows me to be more active which is important. I believe if you find a really good chiropractor it can really make a difference.
Nancy

Ed Tobias

Hi Rob,

I'm sorry you've been having all those problems. I have a couple of thoughts. First, a physician who specializes in pain management might be able to help. Also, a physical therapist might be able to work with you to get the exercise you need but can no longer do for yourself.

You may have already done both of these, but if you haven't they are a couple of things to try.

Michele Snead

I have knee pain. It keeps me from doing things I want to do. Someone one told me that the muscles are weak and are not holding the tendons and ligaments in place. Could this be from my MS do you think? Just from what you know and your experience. Thank you if you have any thoughts.

Ed Tobias

Hi Michele,

My personal thought is that you should have your knees examined by an orthopedic physician. It doesn't matter whether or not it's MS-related. That doctor should be able to tell you whether something like physical therapy might help or suggest other possibilities.

Michele Snead

Thank you for your reply. I have and I get a cortisone shot and then feels better for a little while. He said he didnt know if it was MS or not. He had not heard that. Maybe a second opinion is in order.

Ed Tobias

Hi Michele,

I'd suggest whichever doctor is giving you the cortisone shot coordinate with your neurologist. The two, and your primary physician, shouldn't be operating in silos. Perhaps if they put their heads together they can come up with a solution.

Olena Lytvyn

I sincerely sympathize with you. I have a similar situation. I have been suffering from multiple sclerosis for more than 20 years, and only now the pains that you write about have begun. Let's NOT give up!

Ed Tobias

Hi Olena,

No, definitely don't give up. As I mentioned in my column, I do a couple of things to try to help with my pain and they do help, a bit. I hope you can keep your pain to a minimum.

Swimming is the best exercise for my MS. I used to run daily but don't any more because of the risk of tripping over my own feet and overheating. In the pool I don't overheat and usually I won't experience any symptoms for the rest of the day. I've been scuba diving for about 50 years now (I'm almost 70) and plan on doing some more once I finally retire.

Ed Tobias

Hi Al,

I agree with you about swimming, or even pool walking. I wish I could say it relieves me of symptoms for the rest of the day but it does make me feel better overall.

Katy Cardinal

Thanks for this post !! Have felt so alone when it comes to this awful pain thing. How do we get a research project going addressing the pain issue with MS? Something needs to get done. Started falling down in 1981. Now the pain is the biggest challenge. 24 hours a day. Medication is not the answer. Same for PT. We need to find alternative therapies/methods. I am slightly making it by constantly changing position (on purpose)....using hot water spray in the shower when a spot is too intense.......watching diet....and a weird variation of meditation breathing....salves.... Thai Chi..... Now hemp. Older age plus MS might be ahead for everyone.? Again...we need to get research going on this to help others. Tackle the pain challenge. Yes.

Ed Tobias

Hi Katy,

I'm sorry you've had so much pain. You seem to be doing a lot of the things that I've read others suggesting and I'm sorry they haven't helped much. There has been research into this - just Google "MS pain research" to read several studies. Unfortunately, the research hasn't come up with a magic potion.

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Who says MS doesn’t hurt?