u/Frosty-Database-5921

32F, currently diagnosed with autonomic dysfunction (unspecified) among a few other things, and I’m currently waiting for neurology after being hospitalized in 2025 with occipital white matter edema that resolved without a clear explanation. I had to leave my job afterward and currently can’t work.

I’m not asking for diagnosis advice, mostly just wondering if others here deal with similar severe flares and how you manage day to day functioning.

Some of the symptoms I struggle with:
- episodes of extreme weakness/exhaustion that can feel almost sedating or “drugged”
- dizziness/lightheadedness
- stumbling, balance problems, walking into things
- tremors
- heart palpitations
- flushing, chills, hot flashes
- brain fog/cognitive dysfunction
- visual pulsing/vibrating sensations
- headaches and pressure at the base of my skull/neck
- GI issues
- worsening symptoms with heat, stress, exertion and poor sleep
- intermittent shortness of breath or difficulty taking a full breath

I also deal with allergy/inflammatory-type symptoms that seem to flare alongside everything else sometimes, like:
- severe eye puffiness/swelling
- itchy/burning eyes
- congestion/sneezing
- eczema/rashes

One example from this week:
After a sleep-deprived EEG, I had a major flare the next morning where I could barely walk properly, was stumbling into things, struggling to hold my head up, extremely weak and felt almost unable to function. I ended up needing someone else to drive me home because I clearly wasn’t okay.

I’ve had a lot of testing and appointments over the last couple years and honestly feel pretty discouraged and overwhelmed at this point.

I guess I’m mainly wondering:
- how do you personally manage severe dysautonomia flares?
- what has actually helped your day-to-day functioning?
- how do you balance continuing medical investigation while also trying to mentally cope with chronic symptoms?

I feel like I’m stuck somewhere between “keep pushing for answers” and “accept that this is my life now,” and I’m struggling with that balance.

32F, 195 lbs, 5’6

Medications: Vyvanse, Seroquel, daily antihistamines (usually loratadine and/or cetirizine, occasionally diphenhydramine), occasional nasal decongestant spray. PRN ibuprofen, acetaminophen, naproxen, tramadol, Gravol, Pepcid AC.
Supplements: magnesium bisglycinate and malate, B2, B12, CoQ10, sodium chloride/electrolytes, NAC, melatonin.

Current diagnoses or suspected conditions: autonomic dysfunction (unspecified), grass pollen allergies, eczema, endometriosis, possible fibromyalgia (unsure, it’s an old diagnosis and I’m waiting to get in to a clinic to confirm diagnosis), hearing loss, possible migraines, possible seizures.

In 2025 I was hospitalized for occipital white matter edema involving the cortex (left worse than right). It resolved over a few days with no clear cause. I am currently awaiting neurology workup, but my first appointment is almost a year after the hospitalization. I am currently unable to work.

Before my neurological symptoms worsened and before the hospitalization, I was mostly told my symptoms were likely fibromyalgia, allergies and eczema. Now I genuinely don’t know what to think anymore.

I know this is complex and I’m not expecting a diagnosis from Reddit. I think I’m mostly trying to figure out whether this still sounds relatable to anyone with fibromyalgia, or if this sounds like something I should keep pushing to investigate further.

Some of my main symptoms recently:

- waking up extremely groggy, sometimes feeling almost drugged, and it can last most of the day
- tremors
- congestion/sneezing
- difficulty taking a full breath or yawning in the morning without coughing
- puffy, itchy, burning eyes and eyelids with watery eyes and occasional blurred vision
- chills, hot flashes, facial flushing
- dry mouth/throat
- balance issues, stumbling, falling into things, unsteady walking
- dizziness/lightheadedness
- constantly knocking things over with my hands
- unilateral tinnitus
- headaches, neck pain and pressure at the base of my skull
- visual “vibration” or pulsing with heartbeat
- raspy voice/nearly losing my voice
- brain fog
- tingling in my hands, feet and face
- heart palpitations
- chronic GI issues (daily loose stools/diarrhea for over a year)
- random brief chest sensations that almost feel like the wind being knocked out of me
- rib pain

One example episode from this week:

After a sleep-deprived EEG, I developed significant eye swelling and rash. I took loratadine and cetirizine plus prescribed Elidel, and later diphenhydramine because it still wasn’t improving.

The next morning I woke up feeling severely sedated (this occurs outside of taking Benadryl as well) and unwell with worsening swelling, congestion, head pressure and extreme fatigue. I tried to go pick up my dad and walking up stairs nearly took me out. I was extremely weak and unsteady, had difficulty speaking, could barely hold my head up and kept needing to lean on things to stay upright. My dad ended up driving us home because I clearly wasn’t okay. Once home I could barely make it inside.

That level of severity is what confuses me because it feels beyond what I’d expect from allergies or eczema, and I’m not sure if this fits into fibromyalgia? I don’t have chronic widespread pain really.

I’ve had a lot of tests, appointments and doctors over the last couple years and nothing has really led to clear answers yet. At this point I honestly feel very discouraged about seeking medical care.

I also struggle a lot during appointments because I get overwhelmed, emotional, minimize symptoms or worry I’m being dramatic or a burden.

I should also mention this is just a tiny snapshot of everything that’s going on.

I guess my question is:
Does any of this sound relatable to fibromyalgia for those diagnosed with it? And for anyone with overlapping conditions, how did you know when to keep pushing for further investigation versus trying to accept/manage symptoms as they are?