[blog] notes i brought to the doctor who diagnosed me with me/cfs

timeline goes like this. started experiencing severe, debilitating pain during my periods in college. had at least two cysts and that was some of the worst pain i’ve ever felt. was vomiting and passing out. also had bouts of amenorrhea due to stress. period itself was never particularly heavy and no more than five days at the longest.

went several months in 2022…? without a period. heavy, heavy personal and financial stress then. was exercising then (dance and cardio at home), but was able to do so without trouble.

in 2023–24, started experiencing bouts of fatigue. intense physical and mental exhaustion. at the worst: bedbound, struggling to keep eyes open, slurring speech, lifting even a finger was an effort. dizziness/vertigo when standing and prone to blacking out or fainting. fell once and scraped up my upper lip. changes in temperature would make me lightheaded. no apparent pattern back then.

in 2025, fatigue has settled into a holding pattern around ovulation and period. also hits after days with unusual amounts of exertion (e.g. 10k or more steps). severity depends. have had to miss work because unable to get out of bed and not safe to drive. copious amounts of sleep needed to function on those days. energy picks up slightly after consuming quick calories (carbs, sugar) but inevitably crashes again.

limbs can ache as well; feels like a sort of “growing pain” or, if recovering from exertion, like a sort of buzzing/burning.

have identified somewhat with anecdotes of me/cfs symptoms. have been referring to the crashes as post-exertional malaise because it feels very similar. identified HEAVILY with anecdotes of endometriosis symptoms.

however, periods are very light. no more than three days. bloating is present but very mild. it FEELS severe though. incredibly uncomfortable. fatigue is debilitating and pain is intense for about a day, then usually back to decent functioning. apparently still getting cysts because ultrasound discovered a partially collapsed one a couple months ago.

sharp, stabbing pain during ovulation. also experience cyclical interstitial cystitis-like pain before and especially after my periods. it is SO painful. can keep me from going out or driving. pain relief works minimally. have a history of utis but have not had an actual uti in many years — it’s only this pain.

using a cane now on days when fatigue is disruptive. it has restored some of my movement but not all. some days it feels like a wheelchair is the only way i might be able to get out of bed. i’ve had to give up choreography and focus on gentler movement now. stamina is incredibly low. i love my job, my hobbies and my life but i can’t participate in any of it as much as i used to.

i am cautious of hormonal treatments. i don’t want an iud because my family’s experiences have not been positive. i was diagnosed with pmdd in 2022. i do not know what exactly is going on. i want to be able to work and function around my fatigue. pain is secondary because it responds to midol and ibuprofen. still, the pain has been traumatic. my body responds with panic now.

i already had an ultrasound with my gyno. she recommended consulting with you. she recommended bloodwork first to rule things out.

cbc, cmp, iron panel, thyroid, vitamin d. i have been recommended b9/b12, phosphorus, magnesium, calcium, maybe iodine, thiamine and b1.

then she said maybe a referral to a rheumatologist or endo specialist, depending on what the bloodwork returns.

i am on 20mg of prozac being prescribed by a psychiatrist. i would like to move that prescription to this office and up the dose.

i would like bloodwork ordered.

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For #MillionsMissing this year, I thought I’d share the write-up I brought to my doctor when I was formally diagnosed with ME/CFS.

I brought my cane that day, even though I could’ve walked unassisted. I expected to be given fifteen minutes, tops. I was terrified. I told myself I wouldn’t walk out until I was offered a solution that wasn’t changes to my diet, better sleep hygiene, or birth control. I was in business casual with a full face of makeup: a responsible young working woman, educated on more than Doctor Google, with serious concerns for my health and future.

I talked for forty-five minutes. My doctor asked follow-up questions and had me clarify certain points. I went over all the fucked-up shit I had pretended was normal for the last eight years, and at the end she prescribed me 30mg of Prozac and a sleep study, then explained the concept of a differential diagnosis. ME/CFS was out of her mouth before mine.

After that I wasn’t really scared at all. I cried in her office, but it was out of relief, not fear. I said Thank you for listening. You’re the first one.

She gave me a plan, scheduled a follow-up, and reminded me not to tell HR a thing unless they made a formal request in writing.

You’re the best of them, Dr. S.

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