A reader of my blogs recently asked the question, “Is there pain associated with Myasthenia Gravis?” This person is a family member of someone with MG and was curious as to whether the pain their loved one was having was due to it.
In researching this question, I viewed various MG websites and also utilized my good friend at ChatGPT. I’ll provide the clinical answer first, followed by my personal experiences.
The experts say there can be pain with MG although it’s not a typical symptom of MG itself. Any pain is usually secondary pain or discomfort related to the symptoms and complications of MG, like:
- Muscle Fatigue and Weakness – muscle weakness, especially after exertion, often leads to physical strain on other muscles. Pain and discomfort can arise from overcompensating muscles or poor posture due to weakness in specific muscle groups (like neck, shoulders and legs).
- Joint and Muscle Pain from Misalignment – weakness in stabilizing muscles (like neck and shoulders) may lead to pain in surrounding areas as the body tries to adjust.
- Difficulty Breathing – if MG affects the respiratory muscles, there may be chest pain or discomfort from difficulty breathing, coughing or using accessory muscles to compensate.
- Crisis Situations – in a myasthenic crisis where breathing is severely impacted, pain may be associated with intense muscle fatigue and medical interventions.
- Medication Side Effects – some medications for MG (like corticosteroids or immunosuppressants) may cause joint pain, muscle cramping, or osteoporosis, contributing to pain or discomfort over time.
- Eye Strain – ocular MG often causes double vision (diplopia) or eyelid drooping (ptosis), which may lead to headaches or eye strain due to constant muscle compensation.
In short, while pain is not usually a direct symptom of MG, many patients experience pain as a secondary effect of muscle weakness, fatigue, or complications from the condition or its treatment.
With that said, allow me to discuss my experiences with pain. In addition to MG, I also have other medical conditions which could be the source or perhaps contribute to some of the pain I experience. On top of that, I’m old. At 70, you expect to feel pain. People warned me about it all my life saying, “You think you hurt now? Just wait until you get old”, but I wasn’t prepared for it. Aches and pains are a way of life for older people and probably for the same reasons as pain experienced with MG. More than likely what older people are experiencing is secondary pain due to weakness, fatigue, or complications from various medical treatments.
Muscle fatigue and spasms typically cause most of my pain. For example, after mowing the grass, I get severe spasms in the calves of my legs. While these spasms could be due to muscle fatigue, they could also be caused by circulation issues in my legs. I’ve had both my legs ablated due to venous insufficiency.
I get sore from coughing when I catch a cold, as everyone does, but sometimes I get so weak from coughing that I can’t cough forcefully enough to clear my lungs and bronchial tubes. This is not only painful, but dangerous should pneumonia or a myasthenic crisis occur.
I also have double vision. I notice it mostly when I’m reading. Each letter has a shadow letter located slightly below the original. While it can make reading difficult at times, it can also make my eyes extremely tired and sore from trying to compensate.
One of the stranger things that happens and leads to pain is my head will slowly start to tip to my left side while watching tv. I don’t even recognize it’s happening until my head is tipped about 45 degrees. That’s because my neck muscles become weaker on my right side making my head tip to the left. When I realize it, I straighten my head back up, but it usually keeps occurring. Eventually, my neck and shoulders on my right side become sore.
So, in answer to your question, pain is real with MG, but it’s typically pain that is secondary to muscle weakness, fatigue, or complications. Usually there is no direct pain associated with MG, but that doesn’t make the secondary pain any less painful.
If your loved one is experiencing pain, make sure they discuss it with their doctor. Their doctor should be able to provide them with suggestions on how to avoid or treat the secondary pain, or at least provide some methods for relieving some of the pain that surfaces.
I’m not sure there is any remedy for pain associated with aging. I think it just serves to remind us to be thankful for the days when we don’t ache!