It's been...a long time. A lot has happened. I'll try my best to explain everything that has changed.
It's been almost a year since I finally got some answers. Finally, some names to the monsters I've been fighting against for so long. Fibromyalgia. hEDS. Surprisingly enough, I don't have Hashimoto's, despite my thyroid disorder and my family history.
I haven't been given much in terms of help as to how to deal with these things. A med here, some PT there. But the pain and the fatigue never stopped. In fact, it got worse. I had to buy heavier, more extreme braces. I had to start going to a chiropractor twice a week because I sublux and dislocate so many things so often. I use a manual wheelchair part time because my knees are weak and tired and they sometimes just can't hold me up. I now have to wear a spica splint to bed because I dislocated my actual hand trying to open a bag of fruit snacks.
Friendly reminder that I am 22.
And now, I'm struggling with a new obstacle. Some new, worrying symptoms appeared to hit me like a train. A sudden, severe headache. Migraine. It felt like it was going to push my eyes out of my head. My scalp was tight. My neck hurt, and was stiff, but I had no real issue moving it. Sometimes, it felt like my brain was swelling, but it wasn't. I was getting muscle spasms in my neck and on my scalp. I was getting brain zaps, unrelated to any medications I was taking.Pain bloomed from the spot that my neck met my skull. I couldn't drive, and I couldn't lay down properly. I could barely talk, the rest of my other pain was worse, driving was out of the question. I was terrified. I still am.
It's been 3 weeks. My doctor put me on a steroid, an anticonvulsant, a strong painkiller, and 2 supplements to try to curb the pain. I can at least function.We still don't know what's wrong. She's going to try to taper me off of the steroid, and we hope that the rest of my meds will still be enough to at least make me functional on the most basic of levels.
But I'm so tired. The meds messed up my schedule, increasing my fatigue tenfold. I need naps. My brain fog is impossible to manage. I don't know what to do because I still need to do an x-ray and an MRI. And I'm trying to go back to work. I have a hunch as to what may be going on with me, but I don't know how to start researching it, and I don't know how to bring it up to my doctor. I'm just so tired.
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