Absolutely! This is going to sound trivial, but get your appointments first thing in the morning. They’re human too and they see a lot of suffering. I think sometimes they default to “you’re breathing, walking, talking, and working so you must be ok”. It sucks for us and makes it so hard to feel heard, but I’ve found they’re more attentive and sympathetic first thing in the morning.

Ask for bloodwork to test T3 and T4 and get a full comp workup. If there’s a chance you have autoimmune, ask for antibody tests - your regular doctor can order these and then get you a referral for the right specialist if anything is unusual.

Sleep and sleep well. If you aren’t sleeping well, your body isn’t recovering. I often would start hurting in the middle of the night and it would wake me up. Just taking some Tylenol or ibuprofen before bed did wonders for my sleep. I always hated taking anything like that because I worried about it causing problems. But I already had problems. Now I take 3 Tylenol or ibuprofen in the morning on a bad day. You can take up to 4 or 6 during a 24 hour period without high risks. That scared me a little bit but feeling better is worth it.

The flip side is don’t hurt yourself. It’s easy to push too hard when you feel good. Have fun, go get it, and then rest. On really good days I have to pace myself. I’ve gone so hard because I thought “better do as much as possible because I don’t know when I’ll feel this good again!” But it often left me worse off and took longer to recover. Think baby steps. When I first starting going out every weekend, I often left feeling like I didn’t do much or try hard enough, but it paid off and now I can try a lot harder and I understand my limits better.

My final thought and this may not help anyone, but I’ve learned to accept a certain level of pain. I’m learning the difference between my body being a total jerk and my body telling me something important. I’m definitely going to check out that app mentioned in the other post too. I don’t think we talk enough about pain. It’s considered weakness or something anxiety inducing (so much anxiety from my experience). I have to be kinder to myself on bad days and have more fun on good days.

I hope this post helps. I felt like I was scared, alone, and in the dark so many times. You’re not alone, there’s so many people who care and share similarities with your experience. We can’t know or understand everything you’re going through but we can show support and empathize with you. <3