Frustrated and exhausted

I was diagnosed late 2022 and have found a definite connection between my menstrual cycle (I am a 33 yr old female) and flare ups. That being said, I can go months without incident only to crash and burn the next month without warning. My symptoms are loss of L arm and hand (like, can’t lift it or make a fist); migraines and/or cluster headaches; nerve pain through L cheek/trap/arm/hip; and wobbly gait. I also get extreme exhaustion coming out of the flare up that lasts for days.

I was on Lyrica at one point for pain and had to take a 3 month leave from work because of the side effects. Thereafter, went on Cymbalta but have fully come off that due to the incessant brain zaps that wouldn’t go away. I have a topical ointment that has gabapentin in it from my GP for nerve pain, which, while it does help with the pain… obviously none of the other symptoms go away.

I’ve been pretty solid for awhile and felt happy/hopeful only to have the worst flare up since my diagnosis on Sunday 1 week ago. Took Monday off. Couldn’t use my L hand. Had brutal headaches. Basically lived like a zombie for 48 hours. Did the Tylenol/Advil combo per my GP for the headaches. Also took Benadryl at night.

1 week later and I still feel like shit. Work has been great about minimizing my hours and I’m following up with my GP this week about accommodations but I am so frustrated I just cry. I feel like a shell of myself. I don’t find joy in my life day to day. I am living in a constant state of brain fog. I’m forgetting words and my body just hurts. Luckily my gait has come back and I’ve regained use of my L hand… but I haven’t been able to get back to my regular walks or Pilates (that keep me sane and HELP to ease the pain)…

I hate being told the only way to feel better is Rx medication. Or having some of the other health practitioners just shake their head and look at me with pity…

Tbh all I want to do right now is crawl into bed and sleep for an indefinite period of time.