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.
Sandra
También estoy cansada de escuchar de los médicos .... Esto o aquello no son síntomas de la miastenia. Seguramente estás deprimido o con ansiedad.
Ben Olivarez
Dear Ms. Bendiff,
Thank you for writing and voicing what many of us live with day to day. Each time I read or hear acknowledgement, even as my tears flow because of these words, I feel it as a balm. Soothing to my soul.
Thank you,
Ben
Sarah Bendiff
Dear Ben,
Thank you so much for your message. Knowing that my words can soothe your soul truly touched me. Your kindness and honesty go straight to my heart. People like you are exactly why I stay motivated and excited to write my columns every week.
I wish you comfort, strength, and many peaceful days ahead.
With all my support,
Sarah
Dianne Van Horn
I was diagnosed with MG six months ago. At first it was fatigue and muscle aches in my arms. It has now progressed to severe joint pain at night and all my muscles ache. I’m only taking mestinon and wonder if there any other meds that help with the join pain, it is the worst.
Sarah Bendiff
Hello Dianne, it’s exactly what BioNews is about — helping all of us navigate the unknown by sharing our experiences. I’m really glad my column help you look at things through another patient’s perspective. Living with MG can feel confusing and overwhelming, especially in the first months, and pain on top of everything else is truly exhausting.
What you are feeling is valid. Even if textbooks say otherwise, so many of us experience things that don’t always “fit” the medical description. You deserve to be heard and taken seriously. I really hope you can talk openly with your healthcare team about the pain you are going through, because you shouldn’t have to suffer in silence — sometimes adjustments or additional support can make a real difference.
I sincerely hope you find your own rhythm, comfort, and coping strategies with time, and that this journey becomes a little lighter and kinder to you. We’re walking this path together.
Nikki S Meyers
Sarah, thanks for being so open and honest. My original neuro told me that there is no pain with MG so for 20 years I have not talked about it. But, you are right. It is just there, affecting every part of your life. I realized I never even mention the pain to my family. So thanks again.
Sarah Bendiff
Hello Nikki, thank you so much for sharing this. I completely understand why you’ve stayed silent for so long, especially when a doctor tells you that something “isn’t part of MG.” It makes you doubt your own experience, even when your body is clearly speaking. You’re absolutely right: the pain is there, and it truly affects every part of daily life, even the small moments others don’t notice.
I’m really grateful you trusted us enough to talk about it here. Every time someone shares honestly, it helps others feel less alone, and it also pushes the medical world to keep learning from real patient experiences, not just from textbooks. I hope you’ll keep sharing and keep having hope that medicine will continue to evolve and offer better understanding and solutions for all of us.
Marcia Lester
I was diagnosed with myasthenia 40 years ago. I have always had pain. It was because of the weakness in my neck and back. I was lucky enough to have a neurologist who said that you could have pain with myasthenia.
Sarah Bendiff
Thank you so much for sharing this. It really helps to hear from someone who has lived with MG for so many years and openly talks about pain being part of the journey. I’m really glad your neurologist recognized that pain can exist with myasthenia. It gives a lot of hope to know that there are doctors who are willing to think beyond the “standard” definition and truly listen to their patients.
Stories like yours remind us why it’s so important to keep talking about our experiences. They help push the medical world to see the full reality of MG, not just what’s written in theory.
Donna
I know so many doctors say MG course is no pain. They are so wrong. They are just not listening to patients. They also say that incontinence is not part of the disease again they’re not living it so boring. It’s a muscle. It’s weak. There are problems.
When your muscles aren’t getting the nerve sensations, you’re using them they’re swelling. The pain is unbearable sometimes and of course, the neurologist your rheumatologist. Nobody wants to give you any pain medicine now on this day and age which leaves the patient like me 79 years old in pain, some days I’m not able to move well.
I think it’ll be good if these doctors want a son at least MG boards to see what people living with GMG really have to deal with. The 15 minutes that you spend in the office with patients does not give you a true picture of how they live in reality.
Sorry to run rage, but you come home from the doctors office and right away. Everybody wants them to be rated right away. I wish I was awake. We can get back to real medicine like it used to be.
Sarah Bendiff
Thank you so much for sharing this. My heart truly feels your pain. What you’re describing is real, and I know so many people living with MG experience symptoms that aren’t always reflected in the medical books, especially when it comes to pain, weakness, and everything they bring into daily life.
I believe that part of our mission as patients is to keep speaking honestly about what we go through, so that doctors and researchers can better understand the full reality of MG. Many of them genuinely want to help, but they do not always get the full picture during short appointments, so our voices and stories really matter.
Margaret Fox
When I am close to having an infusion my muscles twitch and cramp all night long. I have started wearing compression socks to bed and it helps. It doesn’t take it away completely but it helps.
Joerg Koehler
You are really speaking from my heart, I can fully identify with your emotional words. For me, it´s especially the sleepless nights that that me down. Nights, in which I do not know how to lie down in order to fall asleep and nights in which I constantly feel my stressed legs while they cramp up. To be eager to learn about MG and to carefully keep track of all symptoms and not being taken seriously is so disappointing...
Stephanie Holt
I was diagnosed with seronegative MG 18 months ago with double vision initially but after 6 months the muscle burning pain started in my legs and then to upper arms and shoulders. It feels like the burning muscle pain you get when running up 5 flights of stairs. Also muscle weakness and off balance more. When my other symptoms are worse the burning muscle pain is worse and more wide spread. Why wouldn’t my muscles hurt if they no longer have the strength they normally would? My pain does go away when I stop what I am doing but always comes back. I have only found one person on line that described her pain like this…once again we are all unique!
Gwenn Bazajou
Thank you so much for sharing your story. I have been diagnosed with mg for 4 and 1/2 years now and it is a resistant case that forces me and my doctors to keep looking at new options. I also have fibromyalgia and really believe that the mg has complicated that for me. Thanks again. I wish you health.