Love/Hate Plaquenil

It has only been 2 days since I went down from 400mg of Plaquenil to 200. I was taking it twice a day, now I just take one a night. I stopped taking it because of the increasing muscle weakness in my arms and legs. It was making every day things like showering, dressing, walking a real challenge. I wanted to be sure that it was the Plaquenil that was causing this progression before my neurology appointment next month. 

But...

After just 2 days of a reduced dose I've noticed a huge difference:
- The eustachian tube dysfunction (ETD) I've struggled with in my right ear for years now was back this morning. Feeling full, a little blocked and making me dizzy.

- I couldn't sleep because 1) I felt wired/awake 2) the serious pain in my back (especially my lower back.)

- The neuropathy in my hands increased, especially last night.

- My joints ache continually again (not just from "gelling" when I get up.)

- Did I mention the dizziness? That sucks.

- I'm much more tired today. Could be from not sleeping well though.

My rheumatologist still hasn't gotten back to me, so this morning I messaged my doctor. I was very frank and asked if I should go back to 400mg, try another drug or see another rheumatologist. I may try and call her today as well seeing as I feel horrid.

This just adds to that looming feeling of isolation and like I'm in this with very minimal medical oversight. I keep reading how "early treatment and intervention is KEY" and then the medical "experts" really aren't working with me. It's very frustrating. Every minute I'm second guessing myself and feeling like I should just go back up to 400. But the muscle fatigue really was a big problem and I DO want to know if it was being caused by the Plaquenil. 

I went to the store this morning, which was great. Then I stared at the bags in my car and just wanted to cry at the thought of brining them inside PLUS putting all the food away. I sucked it up and did it, but it was hard. 

I HATE that things like grocery shopping are now hard. I feel angry, sad, frustrated, pissed at my doctors and hostile to my traitorous body. I'll feel more hopeful tomorrow. But today is for sulking under a blanket.