Doctors say MG doesn’t cause pain, but my body suggests otherwise
My lived experience is valid, even if it doesn't match expectations
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Tiredness and exhaustion can often be solved with rest, but constant pain and discomfort steal sleep from my eyes. Doctors keep telling me that myasthenia gravis (MG) doesn’t cause pain, yet my body suggests the opposite. So I keep asking myself: Is MG really painless?
I have been living with MG for more than 17 years now, and my most consistent symptoms are sore muscles, joint pain, and deep muscle pain that I still struggle to describe. It isn’t sharp or burning; it’s heavy, dull, and overwhelming, like my body is carrying a weight it was never designed to hold.
I also have fibromyalgia, and I feel that pain clearly in my tendons and joints. I know how fibromyalgia behaves in my body, and the pain I associate with MG feels different. It appears when I am exhausted, when my muscles are no longer responding, when my body reaches a point where it simply cannot compensate anymore. To this day, I still do not fully understand why it happens.
The worst pain for me is when my neck gets tired. It feels like I am lifting a mountain, not just holding my head upright. My head becomes too heavy for my body. Sitting, standing, even lying down becomes uncomfortable. And trust me, that is pain. Heavy, crushing pain. The kind that drains you emotionally as much as it drains you physically.
My pain is valid
What makes this situation even more frustrating is the feeling of not being understood. Of being dismissed. Of hearing that what I feel is “not typical” or “not expected” with my condition. As if pain only exists when it fits into medical definitions or clinical studies. And I keep wondering: Who decides what pain is valid?
How can someone who is not in my body tell me how my body feels?
Pain is still treated as something that needs to be measured quickly, summarized in numbers, and compared with averages. But pain does not live in charts. It lives in bodies. It lives in sleepless nights, in mornings where lifting your head feels impossible, and in days where every movement comes with a cost.
Not everyone experiences pain in the same way, just as not everyone experiences temperature in the same way. Some people freeze easily, others barely feel the cold. Some people tolerate pain quietly, others feel it intensely. And none of these experiences is less real or valid than the others.
Maybe the real issue isn’t whether MG is “supposed” to cause pain or not. Maybe the issue is that many in the medical field still struggle to truly listen when lived experiences do not match expectations — when symptoms overlap, mix, or exist in gray zones that haven’t been fully explored yet.
What I know for sure is this: My pain is real. It shapes my days and nights. It affects how I rest, how I move, and how I relate to my own body. And even if it cannot always be explained, it deserves to be acknowledged.
Because the beauty of being human lies in our differences, in our complexity, and in the fact that no two bodies tell the same story.
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.
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