Hi, Kaura. I'm so sorry to hear that you've had to endure constant pain for so long, and without a diagnosis.

The hallmark of myasthenia gravis is muscle weakness that gets worse when you use the muscle. MG often starts in the eyes, causing drooping eyelids and double vision like you described. Then it usually becomes "generalized," which means it spreads to the rest of the body too. Typical symptoms of generalized MG in the beginning are things like having trouble getting out of a chair without using your hands, or having trouble holding up the hair dryer when you dry your hair. Some people also have trouble breathing, talking, chewing, or swallowing, or trouble holding up their heads.

If you read lists of MG symptoms, you won't usually find "pain" included. It is true that a lot of people on this list have pain. But I don't think any of us have only pain with no noticeable specific muscle weakness. The weakness is the primary symptom, because myasthenia interrupts the communication between the nerves and the muscles. They call it "weakness," but it's more like partial paralysis.

If I'm reading you correctly, you don't have any symptoms on the typical MG list (your eye problems have been gone for several years, right?) I'm glad you posted here, though. There are a lot of incredibly knowledgeable people here, and maybe someone can suggest another disease to look into.

I hope you get relief and answers very soon, and I'm counting my blessings today, because although MG really affects my life, I'm not usually in pain. So thanks for the reminder that I have a lot to be grateful for.

Abby