Patient Blogs | Multiple Sclerosis
Understanding Different Types of MS Pain: Part 1
tight chest

I heard once from a doctor that MS doesn’t cause any pain. Really? I'm not sure where he got that from but, evidently, he had no idea, he was clueless. And this was a doctor. Imagine the perception that some people could have about MS pain.

MS pain is very particular to each patient. Everybody experiences it in different ways. Some MSers have neuropathic pain caused by nerve damage, and others have muscle and joint pain caused by changes in gait, atrophy, or spasticity.

Let's mention a few, shall we?                                                    

1. Trigeminal neuralgia, one of the worst pains any human being could feel, according to some MS fellows. Luckily, I haven’t experienced it so far, knock on wood. Trigeminal neuralgia is a facial pain caused by damage to one or more of the three branches of the trigeminal nerve. 

There are medications to treat trigeminal neuralgia, but many times they’re unsuccessful or their efficacy is reduced over time. There’s a surgical procedure called GKRS (gamma knife radiosurgery) which applies a high dose of radiation to the trigeminal nerve in your head, aiming for pain relief.

2. Eye pain, associated with optic neuritis, one of the first symptoms of MS, caused by inflammation of your optic nerve, usually affects one eye at a time. You could experience double or blurred vision, dimming of colors, blind spots, or flashes of lights, as well as a sharp poke that comes out of nowhere when you move your eyes from side to side. 

In some cases, optic neuritis can be triggered by being exposed to high temperatures or by the overheating of the body after a strenuous workout, for example. It could compromise your eyesight after an episode and could leave some aftereffects to the quality of your vision. 

It usually resolves on its own after a month or so. In case the symptoms persist longer and treatment is needed, steroids are commonly used to reduce the inflammation of the optic nerve.

I've lived with eye pain since long before I was officially diagnosed with multiple sclerosis. It comes and goes, and so far, I haven’t had any long-term consequences. It's usually located right above my eye, and in my case, it's triggered by not sleeping enough hours. 

Now, that sudden sharp poke hits me right on the corner of my eye near the lacrimal duct. It feels like I got poked with a knitting needle, mercilessly. It can be very painful and unexpected. It throws me off, to the point that I must stop whatever I'm doing, and usually I end up tearing and rubbing my eye until it subsides. It lasts only a few seconds, but it really hurts.

3. The infamous MS hug, the hug that nobody wants. It's not warm, it's not loving, it's horrible. You may not know, but the MS hug comes in different varieties. Some describe it as a squeezing sensation around the ribcage. Others as their rib bones being painful or sensitive to touch. Others say it feels like they have a tight band around their chest or stomach and it’s hard to breathe.

I experienced my first MS hug when I was a little girl, just about 6 or 8 years old. It happened several times. I didn't tell anyone. I didn't know what that pain on my ribs was. I learned that standing in front of the bed and just laying the upper part of my body on it would give me some relief. I remember many times I kind of fell asleep and when I woke up from that position, it was gone.

Then, it went away for many years, until I was in my 20s. I probably had two or three more episodes. I remember that if I took a deep breath, it would hurt me a lot. And also, it was mainly on one side of my chest. One day I took a deep breath, so deep with all my strength, taking in all the pain, and I heard a popping sound. After that, I never had the MS hug again. It was gone for good.

Now, most recently after my diagnosis, I have tenderness on the bones in the center of my chest, right where my sternum ends, and under my breasts. If I don't touch it, it doesn't hurt me, but if I do, it's very sensitive and unpleasant. 

The real cause is unknown. But there are theories about what could possibly trigger the MS hug: muscles spasms in the small muscles between the ribs or dysesthesia (changes in sensation). 

As far as treatment, it depends on what works for you: cold packs, warm compresses, stretching exercises, muscle relaxers, or anti-inflammatory drugs, steroids, breathing techniques, etc.

In multiple sclerosis, there's pain that is caused by MS and pain that is related to MS. For instance, neuropathic pain is caused by nerve damage. Examples of this could be burning sensation, pins and needles, prickling, and itchiness.

Now, musculoskeletal pain is a consequence of changes in gait, falls, weakness, balance problems, circumduction or swinging of the leg when walking, and all other stresses MS puts on the body.

As you can see, there are different types of pain in MS, and this is just the beginning. From not being any pain in MS, according to that doctor, there's plenty to talk about. So much that I will have to continue this topic in a second part to this article. Photo Credit: 

To be continued...


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Photo Credit: AntonioGuillem / Getty Images

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Mayteé Ramos

Mayteé Ramos

Diagnosed since 2015

Mayteé Ramos was diagnosed with relapsing-remitting multiple sclerosis in 2015. She is a support group leader for the National Multiple Sclerosis Society, a member of the Buddy Network for, and has participated in programs such as the “Ask an MS Expert” series and the PBS American Portrait project. She enjoys traveling, watching tennis, collecting jewelry, and spending time with her three sons. Connect with her here.

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