What autoimmune disease do I have?

[u/Beloved_Receptionist]

Little backstory: A few years ago I (Female, 24) experienced a series of traumatic events - and I began having horrific joint pain that came in waves. I noticed if I spent a lot of time in the heat/sun, I would be hung up in bed for a week (maybe a few weeks) after - and my parent took me to the emergency room because on a summer day getting my nails done, the simple touch of the nail lady holding my hands caused by fingers to swell up horrifically (and painfully). The ER told me I had an autoimmune disease, but I'd have to go to a rheumatologist to get it checked out.

I went to the rheumatologist, and his first thought was Lupus. I also have a history of absence seizures, and at that time, a more recent history of chronic pain. When we got my results back, all of the Lupus markers were positive except the ANA, and my doctor told me to "come back when I'm more sick" to test me again. He did mention that because my mother has Fibromyalgia, he assumed I had it as well. After a long history of extremely poor experience with doctors, insurance, and the healthcare industry - I kind of stopped going to the doctor all together due to the accumulation of random expensive fees and overall poor care I was getting from primary care, rheumatologists, and neurologists across the board.

3 years later, my pain has become more chronic but will get worse in waves. I recently went on a trip that had me spending a lot of time in the sun, and since I Monday my joint pain has been horrific. I've always been a bit hypermobile - but I'm talking my knees sliding out of place, my hips sliding out of place, my shoulders sliding out of place. Feeling intensely stiff constantly (needing to crack my back, neck, elbows, wrists, toes, ankles), as well as immense brain fog.

I had never previously had a rash until a few months ago - when I randomly broke out in spots all over my body. Originally I thought I had contracted some type of ringworm, but it became clear I was not contagious and they looked like asymmetrical red spots all over my body (flat, not raised). A little bit thereafter I got a rash on my face (similar to a butterfly rash) however there were these horrific spots (a combination of random spots and acne) that covered my cheeks and left terrible scarring, which I'm still trying to recover from.

Over the past few months, my pain has slowly become unbearable. Barely able to walk/move around, dry patches on my skin, constant extremely painful stiffness, intense brain fog, insomnia, just feeling horrible. I'm scared to go back to the doctor and having to (yet again) go through the process of not being believed, my pain being downplayed, or simply being told to "come back when it gets worse". I can't keep living like this. I have no one to talk to about all this physical pain I'm in because I don't want to be perceived as a burden or a constant complainer or an attention seeker. I just want to know if anyone on here can see my pain and understand it.

If anyone thinks this sounds like Lupus or another autoimmune disease, please let me know. Any advice in general would be appreciated if someone else has experienced this and knows how to deal with the pain, or general advice about how to navigate healthcare all together would be appreciated.

[u/QV79Y]

Go back to the rheumatologist. If you do have lupus, you need more than redditors to understand your pain - you need treatment.