Exploring the connection between myasthenia gravis and pain

I can’t even begin to count the number of times I’ve seen some version of the following statement in online forums: “I hurt, but my doctors all tell me that pain isn’t a symptom of myasthenia gravis (MG). Does anyone else have pain?”

I see it in support groups, the MG News Forums, Facebook groups, Reddit conversations, Quora questions — everywhere.

If pain is so prevalent among people with MG, how can it not be considered a symptom of the disease? My fellow columnists have written about this topic time and again. Mark Harrington wrote about living with chronic pain, while Retha De Wet noted that her pain is just as real as her MG. And I’ve addressed how I’m learning to navigate pain and other comorbidities through self-care, massage, and elimination diets.

With all of these lived experiences chronicled, why is pain in MG still dismissed and misunderstood?

A Myasthenia Gravis News article titled “Does myasthenia gravis cause pain?” notes, “It is possible that pain arises secondarily to generalized muscle weakness.” From a patient perspective, what might that look like?

I will use myself in the following examples.

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My 3 main pain points

I have chronic lower back and hip pain. My hip flexor and left leg are some of my weakest areas because of MG. When I overdo it and get fatigued, my left foot is always the first to start dragging, and I tend to overcompensate by thrusting my hip forward to help swing my leg forward. Does this trick sound familiar?

By compensating for the weakness in my legs and hips, other muscles have to work overtime. Overuse and overcompensation lead to the pain I feel in my hips and lower back.

My diaphragm and intercostal muscle are also weak. When I overexert myself during physical activity, I start feeling short of breath. If I’m unable to get the shortness of breath under control within 30 minutes, then I get an achy pain between my shoulder blades. My pulmonologist explained that it’s because those accessory muscles are taking up the slack to aid in breathing.

When I get especially tired, double vision sets in. It’s usually in the evening when I’m trying to read and relax. Sometimes I’m too stubborn and “refuse to let MG win,” so I keep reading two sets of lines. If I do that long enough, I’ll get a headache from the eye strain.

What can I say? After not being able to read because of cognitive decline for so many years, now that I’m able to, I’m a glutton for punishment and read every chance I get! But that’s another story for another day.

How I manage the pain

These are the three main types of pain I experience that I can directly associate with how MG affects my body. Now that I’ve identified them, the next question is how to manage this ugly stepsister of a symptom.

I’ve started strength training with my husband, who’s a personal trainer and coach. Together, we’re working on a program that can help me build strength without overtaxing and overexerting my body.

I’ve started putting self-care at the top of my priority list. I used to focus on doing all the things that I thought MG had taken from me. But one thing I’ve learned over the years is that my ability to tackle projects has more to do with my mindset than MG. I focus on getting enough sleep, fueling my body with nutritious food, getting massages, and spending time with friends.

Now that you know both you and your provider are right, what are you going to do about it?

Just a quick hint: Saying “I told you so” is not the answer.

Note: Myasthenia Gravis News 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.