u/HyzMarie

About a couple of months ago now, I started having intense pain and swelling in my hands- I’m a uni student majoring in digital art, but all of a sudden, I couldn’t hold a pencil most days, let alone the fine motor required to actually DRAW.

I thought it was psoriatic arthritis, as did my GP, because I’m around the right age to get it and got a positive ANA. Well, the rheumatologist required more testing to even get an appointment, and I tested positive for Sjogren’s.

Looking back, I realize I’ve always had symptoms (at least, as long as I can remember) and they’ve gotten worse over the years. I can’t remember a time when I didn’t have very dry eyes, mouth, and skin, I had stiff joints around ten, am extremely nearsighted and needed glasses around six or so, have always tired easily, was sometimes skipping meals by ten because I just wasn’t hungry very often, have had migraines as long as I can remember (auras really freak you out as a four-year-old lemme tell you), and developed an increasing level of photosensitivity over the last few years. I legitimately always thought it was a combination of genetics (both my parents are extremely nearsighted and get migraines, I‘m usually photosensitive during migraines, and my mom has psoriasis hence the dry skin), ADHD (not realizing I needed food and also the brain fog), and poor habits (literally just not drinking enough water or exercising enough). BECAUSE WHAT FOUR OR TEN YEAR OLD HAS FREAKING SJOGREN’S???

I recently had to move out of my dorm, and I did it in quite a rush, meaning that now, my tailbone and lower back HATE ME.

I spent most of last night lying on a couch with intense chills, grateful that they at least distracted me from the pain, not able to move or twist my spine at all, and alternating between agony and numbness in my lower back.

Now it’s 5am and the pain is keeping me awake.

I have tested positive, so at least I know what it is now, but I technically have not gotten diagnosed because of the lovely US healthcare system making it take ages to get into a rheumatologist. As a result, I can’t get prescription treatments or anything not OTC other than that my GP very kindly prescribed Meloxicam because I could not handle the pain (and it was better then than it is now).

I am in SO much pain- I can barely move and the brain fog is exacerbated by the pain taking up my mental energy, meaning I can’t actually do just about anything because all of the hobbies I’ve had over the years (there are many, thanks ADHD) require fine motor, brainpower, or both.

I’ve had warm compresses help and the Meloxicam helps but the fact that I need to eat with it and can’t lie down after taking it makes it hard to stay on top of, and now I can’t take ibuprofen other than very occasionally (tylenol and other OTC pain meds have their own reasons I can’t take them). Ibuprofen helped SO much last night though that I am now sorely tempted.

so… any advice for dealing with pain outside of medication / while waiting on an official diagnosis? Anything is much appreciated because I can’t stand this. I joked about wanting to remove my immune system, was reminded by the person I said that to that you die without one, and internally thought “that might be better.” I have been suicidal before, so I know the feeling, but this is not that- I don’t really want to die, but I’m in so much pain that at this point anything would be better.

PLEASE help.

EDIT: after looking around the sub a bit more, I saw a lot of diet advice. I actually have a ton of allergies, which is part of why I figured something autoimmune might be going on in the first place- outside air literally causes reactions from touching it in any season except winter, especially with a high pollen count, and I can’t eat any fruit, veggies that are technically fruit/flowers (tomato, cucumber, broccoli, etc), nuts, rosemary, sesame, or honey. Which btw is a lovely thing to deal with when your appetite is already low because very few foods are actually safe and sometimes eating doesn‘t seem worth a reaction- so currently, dietary changes aren‘t really possible, as I quite honestly cannot eat plants other than grains and a handful of veggies.

EDIT 2:

I just want to say thank you to everyone who‘s left kind comments. I‘ve felt very alone as everyone I talk to can only offer “yeah, that sucks, I’m sorry” and I was kind of intimidated as I heard Reddit can be unfriendly to newcomers. Having such helpful and genuine advice has been a very big help mentally :,)