I have and do experience that. Especially, at the very beginning of my diagnosis. It’s very very scary. I went to a speech therapist and an ENT. I also had whooping cough for 200 days during this time. This did get much better with time. Getting my lupus under control helped. I started green smoothies and my numbers improved big time. I still go into flares but the spasms are much better.

I hate to hear that drs are still putting the symptoms on you. I was in the hospital for three months, every three days I needed two units of blood, they couldn't figure out what was causing it so I had to be talking out my blood and getting rid of it. They suggested that I was bleeding myself but they couldn't figure out how. I take Coumadin and so if I cut myself I would not be able to stop it so it wasn't that, I have a port which they never left accessed so there was no way I could do it, but they were just sure I was. It turned out that I have autoimmune hemolytic anemia. Before they figured that out I was treated with Gama globulin and the blood issue stopped, but they discharged me with an INR of 8 and two days later I almost died of a GI bleed, had to be life flighted to a bigger city. I guess this sharing is to explain that you can't let anyone make you question yourself you know your body

I have trouble with my ears as well. They feel full all the time and crack like I’m up in the mountains or on an airplane. I also have pain connected from my ears to my throat. If I wash my ears, it puts me into a bad cough. The ENT says that’s normal ? Really? I don’t think that’s normal at all. I have a lot of pain in my throat as well. The Rheumatologist thinks that my Sjogrens is worse than my lupus now. I take acid reflux pills and that helps some but not always. I’m told that no matter how good you eat, all good puts off acid and lupus can’t fight acid very well. I’m not sure if that’s true but it makes sense.

Saw my primary last week, I have wondered the same. Since this started I have found 3 other adults this is happening too, and we share a medical condition, but not lupus.

I have not had this issue. Some minor problems with swallowing, but nothing to this degree. Have you discussed with your doctor? I wonder if keeping an epi-pen would be handy? Since SLE is auto-immune, and what you described sounds like an allergic reaction, I wonder if a shot of epinephrine would get you past the point of emergency and able to get to a doctor?