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We Need to Talk More About Pain in MS

Real Talk

September 02, 2022

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Sonja Lekovic/Stocksy United

Sonja Lekovic/Stocksy United

by Devin Garlit

•••••

Nancy Hammond, M.D.

Medically Reviewed

•••••

•••••

by Devin Garlit

•••••

Nancy Hammond, M.D.

Medically Reviewed

•••••

•••••

It affects most of us and, if not addressed, can dramatically alter our lives.

When I was first diagnosed with multiple sclerosis (MS) in 2000, my most concerning symptoms were the way my legs frequently became weak and numb. Sometimes I was unable to move them at all. I worried that my mobility would be severely limited.

Thankfully, that didn’t happen — but several years later, another more sinister symptom began to show up, causing an even more profound effect on my daily life: pain.

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Life with pain

At first, the pain started as small electric jolts, usually in my legs. As time went on, I began to experience a burning feeling in my legs and right arm.

It still happens, and when it does, it feels like my legs are on fire from the inside out. It’s as if a raging inferno is sealed inside my legs and I’m unable to extinguish it.

Some days it’s not so bad, but other times it feels unbearable. Yet this nerve pain has become a way of life for me. It has been with me so long that it’s become difficult to remember the days when I didn’t wake up in pain.

I’m a former athlete whose legs were once a great and powerful tool for me. But my pain can be so bad that there have been times when I’ve wondered if it would be better if I just didn’t have legs at all.

While this burning sensation is my chronic and unforgiving enemy, it’s not the only one I have. I frequently deal with spasms and spasticity in my legs and arms that cause my muscles to contract or tighten. This can last anywhere from a few minutes to several hours.

The pain from spasms isn’t super intense for me, but it becomes nearly impossible for me to get comfortable because my muscles are moving without my control.

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Pain in MS

I’m far from alone in my pain. Up to two-thirds of people with MS experience some degree of pain.

MS causes pain both directly and indirectly.

The kind of burning pain that affects my legs is considered neuropathic pain, caused directly by damage to my nerves. Other types of neuropathic pain include:

  • numbness and tingling (paresthesia)
  • itching (pruritus)
  • the “MS hug
  • Lhermitte’s sign, an electric shock sensation that runs down your spine when you flex your neck

These types of painful sensations can come on suddenly and last for just a brief time, or they can become chronic, sometimes occurring daily.

Musculoskeletal pain, on the other hand, is not directly caused by MS but by injuries that occur because of MS-related weakness or stiffness.

For example, I often end up dragging one leg because I can’t fully lift it, so I alter the way I walk to compensate. This means that I’m overtaxing some muscles. I also fall sometimes and bump into a lot of objects throughout the day.

All of these factors end up causing additional pain. Similarly, while spasticity (muscle stiffness) may be caused directly by MS, the pain that occurs as a result of it is essentially musculoskeletal in nature.

Pain is common but not commonly discussed

Despite the widespread prevalence, pain doesn’t seem to get much attention as a major symptom of MS.

Many of my own doctors have only recently begun to understand the effect that pain has on me. When I was diagnosed, pain was never even mentioned to me as a possible symptom.

It probably doesn’t help that pain is a very subjective symptom. There’s no simple test that shows a doctor how much pain you have. Instead, doctors must take our word for it — and they don’t always believe us.

Sometimes, too, we don’t report pain accurately. I can tell you that, as a young guy trying to seem tough, I often underreported my pain in my early years of dealing with MS.

In addition, a person’s tolerance for pain can increase over time. I imagine I’d be screaming continually if I’d had the sensations I have now back when I was first diagnosed. I’m in pain a lot these days, but it’s become so common for me that I simply deal with it and seldom think about discussing it.

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Pain changes you

When I look back over my years with MS-related pain, I can see that it’s made me act in ways that were otherwise out of character for me. Pain has, at times, made me angry and distant, making communication difficult and negatively affecting my relationships.

I have difficulty concentrating because of my pain — and that influences pretty much every part of my life, including my ability to work.

While it’s tough to admit, pain has reduced my quality of life. It feels like there’s always just a little less joy available when you’re constantly in pain. While your tolerance may increase, chronic pain still wears you down after a while.

Pain has made me do things I never expected. At one point — I’m not even sure how this started — I began cutting myself. I wasn’t a teenager, as cutters are often depicted; I was 35 years old. I don’t expect that to make sense to anyone who reads it. It doesn’t even really make sense to me. How can inflicting more pain on yourself help you deal with pain?

Well, for me, it was about control. So much of my pain from MS is something I have little control over. I guess inflicting pain on myself felt good because I could control it. That feeling of control is so important with MS because the disease takes away so much of what you can control.

Cutting wasn’t even the only once-unthinkable thing that pain has made me consider. I have thought about suicide several times when I simply couldn’t handle being in pain all the time.

Remember that you’re not alone

If you or someone you know is in crisis and considering suicide or self-harm, help is available with these resources:

  • The 988 Suicide and Crisis Lifeline. Call the Lifeline at 988 for English or Spanish, 24 hours a day, 7 days a week.
  • The Crisis Text Line. Text HOME to the Crisis Text Line at 741741.
  • The Trevor Project. LGBTQIA+ and under 25 years old? Call 866-488-7386, text “START” to 678678, or chat online 24/7.
  • Veterans Crisis Line. Call 988 and press 1, text 838255, or chat online 24/7.
  • Deaf Crisis Line. Call 321-800-3323, text “HAND” to 839863, or visit their website.
  • Befrienders Worldwide. This international crisis helpline network can help you find a local helpline.

Finding relief

Truthfully, I haven’t found a lot of great ways to treat my pain. I know some people with MS who have done very well with medications for their nerve pain, as well as for their spasms and spasticity, but they don’t help everyone, and by and large, these treatments haven’t worked for me.

I’ve found the most relief in using medical marijuana. The pain is still there when I use it, but it becomes more bearable.

In my own experience, I think that talking about my pain in therapy with a trained professional has been the most helpful approach. While it hasn’t negated my pain, it’s helped me deal with its effects.

Therapy gives me a much better understanding of how my pain influences my actions and feelings (like being more angry), as well as coping strategies for handling those emotions. I think therapy is not mentioned enough as a resource for people trying to manage chronic pain.

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The takeaway

Living with pain is a considerable issue for people with MS, and it can severely diminish our quality of life. We need to talk about pain more often so others understand how devastating it can be as a symptom — and so we can develop strategies to address it.

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About the author

Devin Garlit

Devin Garlit lives in southern Delaware with his senior rescue dog, Ferdinand, where he writes about multiple sclerosis. He’s been around MS his entire life, growing up with his grandfather who had the disease, and then being diagnosed himself when starting college. You can follow his MS journey on Facebook or Instagram.

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