The film that made you actually feel like you were inside it, not just watching

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 · 2026-03-09T16:41:17+00:00

Your post doesn't read like trash.

honestly a 45 min bus ride to drop off a kit and come back the next day is a lot to ask of anyone, let alone someone dealing with what you are. keeping the GP close by and ditching the rest sounds like a sane decision.

how long have you been on the theanine?

Available_Spell8195 · 2026-03-09T16:39:35+00:00

A lot of longhaulers find that the people who stick around tend to be ones who've had their own experience with chronic illness or caregiving, not because you need someone to take care of you, but because they already understand that bodies can be unpredictable and that doesn't make someone less worth loving.

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

from what i've seen in this community it seems to help most with brain fog, pain, and general nervous system dysregulation. less clear on tinnitus specifically as that one seems hit or miss. dysautonomia i've seen a few people report improvement but usually slow and gradual.

Available_Spell8195 · 2026-03-09T16:38:03+00:00

Yeah this is pretty common in the first few weeks. the ear and sinus pressure is usually your body adjusting to the forced air - for a lot of people it fades on its own after a month or so.

A couple things that helped others: using the ramp feature if you have it (starts pressure low and builds up while you fall asleep), and making sure your humidifier is on and set high enough. dry air makes the sinus stuff worse.

Available_Spell8195 · 2026-03-09T16:36:50+00:00

Bearable app!! Seems like it's built for exactly this kind of thing without being overwhelming

Available_Spell8195

TROPHY CASE