Extreme pain and fatigue out of nowhere

Question

For context I've been diagnosed with hEDS, lupus, hypothyroidism, Gilbert's, and chronic urticaria. I personally am unsure about the lupus diagnosis and I think the chronic urticaria is actually MCAS.

I've dealt with chronic pain and fatigue for years but a couple weeks ago the pain became extremely intense out of nowhere. By intense I mean almost 10/10 pain all over my body, primarily muscular skeletal. My muscles become extremely stiff and weak. Just touching my body hurts and trying to give myself a massage to release the tension is even worse. I can barely stand up fully to walk. The pain is especially bad around my neck and jawline. Touching my face is extremely painful as well. I would say there is very mild swelling that accompanies this. I'm also way more tired than normal and needing more naps than usual. It's not out of the ordinary for me to need a nap a few times a week but this is every day needing to completely fall asleep for a couple hours.

This lasts all day if not days at a time. The only thing that is odd is that two weeks ago I had a small procedure. The night after this the pain all over my body was terrible in the same way as described above. My doctor thought my body might be having a hard time metabolizing the propofol but now I'm just completely perplexed as the pain has continued on and off ever since.

Has anyone experienced this and found things that help? I don't even know which of my doctors to talk about this to so any suggestions with that would be helpful as well. Thank you!

Posted Apr 10, 2026, 12:45 AM UTC

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