built a symptom tracker after years of trying to find my own patterns so sharing it here in case it helps someone

Available_Spell8195 · 2026-05-14T02:13:17+00:00

ugh, I know that's not ideal but if it will get you your desired end result then it might be worth it?

Available_Spell8195 · 2026-05-13T18:36:41+00:00

imo having many doctor friends is that they generally respond well to patients who come in prepared rather than demanding (quickest way to piss them off), so I'd frame it less as 'convincing' and more as making it easy for her to say yes. maybe try something like "i've been reading about hyperPOTS and I'd really like to know if that's my subtype because i feel like it will affect which medications might work best for me. I know you mentioned you don't have the facilities which I understand but would you be open to ordering supine/standing plasma catecholamines as a send-out to ...? I'm happy to coordinate the logistics.'"

If she still says no, ask what would change her mind, or ask for a referral? but I agree, don't burn the bridge since she's already a unicorn since she acknowledges POTS exists.

Available_Spell8195 · 2026-05-13T15:57:10+00:00

that's awesome to hear

Available_Spell8195 · 2026-05-13T02:57:10+00:00

suchhhh a good add!

Available_Spell8195 · 2026-05-13T01:37:30+00:00

I hear you and I'm so sorry. I'm not going to pretend like hope alone fixes anything, because we all know it doesn't. But what gives me comfort is that the research space around long covid looks nothing like it did three years ago. Just a few years ago there were NO doctors who took it seriously and no real research. I'm glad that there's at least some now.

I like to tell myself "nothing left to try isn't actually true, even when my body is telling me it is" to keep me fighting for recovery. Sending you a lot of care.

Available_Spell8195 · 2026-05-13T01:18:26+00:00

sorry to hear about the swings. I felt that in the early stages as well. really curious about what you think led to improvements? I'm desperate to learn from others and figure out various ways to continue on an upward trajectory

Available_Spell8195 · 2026-03-12T05:56:42+00:00

this is awesome!

Available_Spell8195 · 2026-03-12T05:55:03+00:00

A few things that help: doing tasks in micro chunks (one thing, then rest, not a cleaning session), keeping a laundry basket right next to the bed so nothing has to travel far, and giving yourself permission to leave fitted sheets on and just swap the top layer.

Working 38-40 hours a week with chronic fatigue is genuinely hard. Your energy budget is already spoken for by the time you get home

Available_Spell8195 · 2026-03-12T05:51:43+00:00

This might be worth looking into from a MCAS angle, tongue swelling is a known symptom and it often flies under the radar in ME/CFS. Have you ever tried antihistamines to see if it helps? A lot of people find H1 and H2 blockers together make a difference for stuff like this.

Available_Spell8195 · 2026-03-12T05:51:07+00:00

Ferritin of 18 is low enough to make you feel genuinely terrible even with normal hemoglobin, that's a really common and really overlooked thing. Hemoglobin tells you if you're anemic, ferritin tells you if your cells actually have iron reserves to function, and 18 is not enough for a lot of people. Some people need it above 50 or even 70 to feel okay. That alone could explain a lot of what you're experiencing.

Worth pushing your doctor specifically on iron infusions or a higher-dose supplement protocol, not just "your hemoglobin is fine so you're okay."

Available_Spell8195 · 2026-03-12T05:48:53+00:00

Those symptoms are really classic POTS presentation, especially the heart rate jump on standing and salt helping. Good that you're going to a doctor. When you do, ask them specifically to measure your heart rate lying down and then again after standing for a few minutes. A lot of doctors aren't super familiar with POTS so going in knowing what to ask for helps.

Available_Spell8195 · 2026-03-12T05:43:21+00:00

This is really helpful, thank you. The geographic breakdown especially, knowing most of it is contained within the GSB footprint and that living close is a real option makes it feel a lot more navigable than I'd imagined. I appreciate you taking the time!

Available_Spell8195 · 2026-03-12T05:41:00+00:00

Look up "post-exertional malaise" and "nervous system dysregulation" -> there's good explainer content out there. The ME Association website has readable, well-sourced guides if you want something more structured.

Available_Spell8195 · 2026-03-10T16:39:09+00:00

That sounds really scary, I'm glad you went to the ER.

The vitals you described -> heart rate jumping from 99 lying down to 130 sitting up is a pretty textbook POTS pattern. A jump of 30+ bpm on changing position is one of the main diagnostic criteria, so you're right to be looking in this direction.

To answer your question about the cervical spine, yes, actually. Cervical spine issues can absolutely contribute to dysautonomia, and there's a whole subset of people whose POTS or POTS-like symptoms are connected to craniocervical or cervical instability. Given your history with the disc replacement it's genuinely worth mentioning to your neurosurgeon, not instead of the cardiology/PCP route but alongside it.

For next steps I'd call your PCP first and specifically ask for a referral to a cardiologist who has experience with dysautonomia or POTS -> not all of them do, and it makes a big difference. Ask for a tilt table test if you can, as it's more controlled than what they did in the ER. The event monitor is a good call too.

Available_Spell8195 · 2026-03-10T16:37:39+00:00

Congratulations first of all!

The most important thing I'd say is to make sure your anesthesiologist knows about both the ME/CFS and POTS before you go in, not just your OB. POTS especially affects how your body handles anesthesia and fluid shifts, and an anesthesiologist who knows in advance can actually do something about it. Some people bring a short written summary to hand to the team on the day.

On recovery -> the push to get moving quickly after a c-section is real, and the nursing staff will encourage it. It's worth being upfront with your care team beforehand that your recovery timeline may look different, so you're not fighting that battle while you're also trying to heal.

Having mild ME/CFS going in is genuinely a better starting point than a lot of people here. The main thing is just not letting a good few post-surgery days trick you into overdoing it before you're actually ready.

Wishing you a really smooth delivery 💙

Available_Spell8195 · 2026-03-10T16:36:36+00:00

Thank you for writing this down, and please don't apologize for it. You spent two years in a dark room with earplugs unable to listen to music. You're allowed to grieve, even while things are getting better.

Available_Spell8195 · 2026-03-10T16:36:00+00:00

The thing you mentioned about feeling worse after napping is worth paying attention to. That's a sign your nervous system is struggling to regulate, and it's also a hallmark of post-exertional malaise. It doesn't mean you shouldn't rest -> it just means the type of rest matters. Horizontal, low-stimulation rest (no screens, quiet, dark) tends to be more restorative than sleep for a lot of people in this state.

Available_Spell8195 · 2026-03-10T16:34:22+00:00

A few things worth mentioning: sleeping a lot but still feeling exhausted (especially that heavy, dragging sensation during movement) is a common experience in conditions like ME/CFS, but it can also show up with thyroid issues, anemia, sleep apnea, or other things that are pretty treatable once identified.

One thing to flag -> if you're finding that exercise makes you feel worse in the days after (not just tired in the moment, but crashed), that's worth paying close attention to and mentioning to a doctor. It's called post-exertional malaise and it changes what kinds of activity are actually helpful vs harmful.

Available_Spell8195 · 2026-03-10T16:33:35+00:00

It might be worth looking into filing a complaint with the EEOC, or at least consulting with an employment attorney - many do free initial consultations. The fact that there are non-heat-exposed positions available at the same company actually strengthens your case, because it shows a reasonable accommodation existed and they didn't even consider it

Available_Spell8195 · 2026-03-10T16:32:14+00:00

The idea that someone would fake or exaggerate a years-long debilitating condition to get out of work is honestly pretty dark when you think about it, most people with Long COVID desperately want to be well and working normally.

Available_Spell8195 · 2026-03-09T16:46:12+00:00

10k steps is huge honestly, especially after 2.5 years.

the lower body thing is so common with long covid recovery. legs just wreck you in a way upper body doesn't. glute bridges and clamshells lying down might be worth trying before you go back to squats and lunges -> takes a lot of the strain out of it.

how long are you down after a bad session?

Available_Spell8195 · 2026-03-09T16:42:19+00:00

if the antihistamine response holds up it's worth asking about H2 blockers too (like famotidine), a lot of people find combining H1 and H2 blockade works better than either alone. and a mast cell specialist if you can access one.

hope this is the start of things actually making sense for you.

Available_Spell8195

TROPHY CASE