u/Shadow_Screen

Ok, I need some help. I finally took the plunge and am trying the circadia app. I want to love it, but it's not making remotely accurate predictions. It's saying my average sleep is like 5 hours, and awake time is 9 hours. That's very inaccurate (sleep is typically around 9 hours, awake 16.5).

I have imported 7 years of sleep data, half of which was prior to free running. I'm wondering if that is why, but can't seem to find a way to only use a portion of that data (and going through manually deleting years feels unrealistic). But regardless if it predicts using an average of all data, it won't be accurate anyway because things fluctuate over time.

Has anyone had a similar issue?

EDIT: I fixed it. I just wiped the data and only imported the post free running data. Thanks for the help.

EDIT2: I lied. the average sleep indicator is accurate now, but the predictions are still off. The rainbow clock on the first page is predicting sleep after only 9 hours of awake time, and the future sleep times in the prefiction tab are all way off. I inputted an appointment I have on Friday thst I'm confident I'll be awake for, but it's warning me I'll be in the middle of my sleep. 🤦‍♀️

Yay or nay?

I've been debating getting one to try and get more movement (leaving the house every day is just not an option right now). It'll be a pain because I don't have anywhere to store it (no furniture it can slide under), but potentially worth it. I'm on the fence though because I've heard some people struggle to walk naturally on them. Thoughts?

Does anyone else have PLME? I can't go in the sun for longer than maybe 10 minutes without breaking out in hives/rash on my arms and chest. I've dealt with this for 25 years, but I feel like it's gotten worse. It seems to come on more easily, and i get it on my face now. Wondering if maybe it's triggering my (suspected) MCAS.

The itching is one thing, but I just feel so drained afterwards, and my eyes get dry too. I want to take my daughter outside without needing to recover the next day.

Sunscreen helps a little, but even going out during low UV times trigger it. I usually am covered head to toe, but it can be hard in the heat.

I'm hoping you all could maybe help piece together what I'm experiencing. I'm not the best and identifying and articulating how my body feels, but I'm trying to get better.

Since I was maybe a preteen I've had these occasional "episodes". Best I can explain it is I fairly suddenly just feel unwell. Kind of mentally out of it, blood drains from my face, a little nauseated, a little like I need to have a BM (but don't), abdominal discomfort (that I don't feel outside of these episodes, doesn't feel specifically digestion related), and just overwhelmingly like I need to sit down. My breathing is fine, I don't quite know how to describe it but it feels like I'm not getting enough oxygen in my body. I do not however feel like I'm going to pass out - no tunnel vision or muffled sounds. I'd guess low blood pressure, but can't confirm.

The first time I remember this happening I was at the CN tower with my family. My mom noticed I looked unwell, I ended up getting taken down the emergency elevator and just sat in the bathroom (nothing happened) until kind of feeling better.

My doctor at the time said I probably just have a problem with high altitude. I'm asthmatic so we just accepted that as the explanation. But in hindsight it doesn't really make sense.

It typically (but not exclusively) occurs in crowded public spaces, that require a lot of standing. I also feel like it's triggered by things like fog machines, or anything that makes the air "weird". No, it isn't stress or anxiety. When it happens I typically find a bathroom to sit in for a while (nothing happens, probably just need to sit), and take my fast acting asthma meds (because of the doctors suggestion).

A prolonged vasovagal response seems to be the best fit, I know fainting isn't a requirement. But because I don’t experience any pre fainting sensation, I don't know. Any ideas?

I just wanted to share a frequent thought I've had, curious if anyone relates.

The family joke about me growing up was that I've "gotta catch em all", meaning I have a lot of things wrong with me. I'm very fortunate that nothing has ever been severe, just plentiful. For example, as a kid (long before my awareness of hEDS and all of it's buddies), I'd be a mess all summer - sun allergy causing a rash, mosquito bites the size of my knee cap, congestion from pollen, itchy feet from touching grass. All in addition to my baseline of asthma, eczema, custom orthotic inserts (and accompanying foot and knee pain), metal allergies (from most jewelery), adhesive allergy (most bandaids), etc.

As I got older, this all continued but all quite manageable. More a list of annoyance than true issues (barring a handful of instances, like passing out as a bridesmaid during the ceremony 🤦‍♀️, or possibly developing a penicillin allergy in my early 20s). But here we are finally connecting the dots, hEDS, POTS, and now considering MCAS.

But the thing is, nothing is THAT bad. My hEDS is definitely the most impactful, I'm in pain daily. But everything else just feels silly to complain about or seek a diagnosis for. When I hear about people regularly passing out from POTS (I have only ever passed out the one time), or going to the ER for anaphalaxis (for the most part I just get itchy- rashes, hives), my experience doesn't feel the same. Don't get me wrong, I'm not interested in the suffering Olympics, and I am certainly happy things aren't worse. Just having "a little bit of everything" makes me feel like an imposter.

My butt is tucked, back hunched, shoulders rolled, head forward. I hate it.

Unless I'm consciously adjusting it, that's my permanent posture. When I do try to adjust it, if I'm not looking in a mirror I don't go far enough (still hunched, just less). I have to arch my back as much as I can to get it in the proper position. And holding even a slightly improved posture is fatiguing and uncomfortable and leads to pain. Plus as soon as I start doing something or think of anything else, it goes back.

I know the general advice is to exercise, specially strengthening the core. But I need more specific input than that.

Yes, I have tried physiotherapy. No one here is familiar with hEDS. I found one PT who said she is, but her program was very generic and not at all tailored to me or what I said.

I'm 37, and feel like my body is collapsing in on itself.

Does anyone have any good suggestions for upper arm compression? I want to try it out, but honestly don't like the look of a lot of the options. I don't really want anything that goes over my bust, and would prefer if it was just upper arm. Does something like that exist?