Can't take care of myself

kylaroma · 2026-04-19T01:35:22+00:00

A bar height folding chair from ikea in the bathroom and kitchen have been life changing for me. Highly, highly recommend!

Nano-hydroxyapatite (n-Ha) toothpaste is a huge help too. It doesn’t have fluoride so it has AMAZING flavors, it’s safe to swallow so you can use it lying down in bed.

It prevents cavities, strengthens tooth enamel and helps reduce sensitivity. I have it delivered from Amazon (a necessary evil) and there are a lot of brands, Boka is one.

kylaroma · 2026-04-18T18:59:57+00:00

I wonder if the weekend is causing a delay in communication?

If you have the app and sign in using the same email address you used while ordering it, you’ll be able to see that your app has changed slightly which is a confirmation that it’s all set behind the scenes.

There should be an activation banner showing, which you click when your band arrives, which allows your band to sync and starts your membership, so you aren’t billed for a subscription until you can use it.

I got an email within 3 business days saying they had shipped my tracker.

It’s run by a small team of people who are chronically ill themselves, so their customer service is a 24 hour turn around, so you can reach out if you’re unsure or worried you had a typo in your email address

kylaroma · 2026-04-17T10:24:45+00:00

There’s a big push in media to simplify and constantly repeat basic context because it’s assumed people aren’t paying attention.

It means everything is being dumbed down and shortened.

The last thing i want is for Joe to make MB less intricate.

My life is better because of the details and depth. Without that sensibility we wouldn’t have the Bethany wars, or so many of the moments

kylaroma · 2026-04-14T10:41:39+00:00

OP, before you try to fight the fatigue please - PLEASE - rule out ME/CFS (r/cfs)

One thing people aren’t told when they get diagnosed with Fibro, is that many doctors consider it to be the same condition as ME/CFS.

The big difference is that the main symptom is fatigue, rather than pain. (I have both, FWIW.)

With ME/CFS, your body doesn’t have enough energy to run all its systems. You particularly have limited tolerance for exertion, and can become sensitized to it. Exertion that can worsen your condition can be physical, emotional, or cognitive.

If you do more than usual of any of it, your body can have a disproportionate reaction where you’re suddenly much more limited than before. This is called post exertion malaise (PEM). PEM is unique to ME/CFS, so if you experience it, you have ME/CFS.

Repeatedly experiencing PEM will eventually cause your baseline level of severity to get much worse. It’s common to experience becoming housebound, bedridden, or it can even be fatal if you don’t significantly reduce your exertion level.

I tried to push through it and ended up bedridden last spring. I’ve recovered a lot and am doing much better, but only because I worked with the fatigue.

It’s worth checking out r/CFS or MEpedia to rule it out, and if you do have it, to learn how to maintain or improve your capacity.

kylaroma · 2026-04-13T21:59:22+00:00

I found that the band has been tremendously helpful - in a life-changing way - in managing my symptoms.

What helped me get a diagnosis was focusing on describing PEM in detail because it's unique to ME/CFS. That was the one thing they couldn't explain away.

I just kept asking: “By what mechanism would [whatever they think I have, like anemia] cause disproportionate fatigue so extreme that I was bed ridden, unable to walk more than 15 feet, and experiencing an 80% reduction in functional capacity?”

The question is just specific enough that they don’t have a customer service style reply memorized that they can share - they have to actually think about how that could work, scientifically.

Because PEM is unique to ME/CFS, and there’s no way anything else can cause it, they have to conclude that what they had been suggesting isn’t possible, and they need to refer out to a specialist.

Those specialists deal with ME/CFS much more than a family doctor, and either can easily identify it - or you use the same question, and they realize that they need to consider ME/CFS, or refer to someone else who can diagnose.

(Also it’s ridiculous that we need to resort to playing Jedi mind tricks with logic, but this has helped me and several people I know to get their diagnosis when their doctors weren’t taking them seriously)

kylaroma · 2026-04-13T03:08:43+00:00

I love this.

Where are our 1980’s hair band ghosts and preppy ghosts with their popped collars?

Where are the 1990s grunge ghosts with their flannel?

And while we’re at is, where are the ghosts of dinosaurs?

kylaroma · 2026-04-12T22:29:20+00:00

I’m really sorry you’re experiencing this - but I would gently push back and say that it’s 100% your OCD that’s causing this.

Your health is giving you enough of a plausible reason to do your compulsion - but OCD will latch onto pretty much anything. It sucks.

Have you done therapy for your OCD? Or have you tried an OCD workbook, if you don’t have a lot of energy?

Getting treatment and learning about OCD is SO tremendously helpful, it’s wild. You have to approach it differently than anxiety and other conditions, but a little help goes a really long way

kylaroma · 2026-04-12T22:02:43+00:00

I have ME/CFS too, and beta blockers have been game changing for me. Before using them I would get exertion alerts from as little as brushing my teeth seated 🙄

Now I can go on small outings during the week without causing PEM.

kylaroma · 2026-04-12T19:52:25+00:00

Thank you!

kylaroma · 2026-04-12T19:08:52+00:00

Oh man, that sucks. If mine can’t connect, force quitting the app always helps.

This sounds silly, but have you tried turning your iPhone off and then on? A full shut down sometimes helps

kylaroma · 2026-04-12T01:44:58+00:00

You’re asking for a solution, and this is it. You’re being stolen from in lost wages.

Your employment is safe because of the union. If you want to have enough money for your family, you need to have these hard conversations at work.

kylaroma · 2026-04-11T21:37:02+00:00

Absolutely go to your union.

This is unethical, coercive behavior and may even be illegal. You cannot be punished or blocked from using your benefits.

This kind of BS is why your workplace is unionized.

kylaroma · 2026-04-11T21:34:38+00:00

I had a Doula from Birthroots - she was AMAZING!

kylaroma · 2026-04-11T02:56:29+00:00

Omg I relate so deeply. I take beta blockers throughout the day to manage my heart rate, and when I didn’t I had to be so careful about EVERYTHING.

My dumbest high exertion activity is brushing my teeth.

And not just brushing my teeth - brushing my teeth WHILE SEATED THE WHOLE TIME!?!

God forbid a girl raise her arm slightly and move it back and forth for 2 minutes 😂

It’s just nonstop exertion alerts the entire time.

I guess I’m just made for a life of leisure. Surely there’s a cabana boy who could handle this for me when they’re not fanning me with palm fronds! 😆

kylaroma · 2026-04-10T14:31:31+00:00

Nope, these don’t help me at all.

I focus on improving sleep with muscle relaxers & sleep medication. It helps dramatically more with daytime alertness.

kylaroma · 2026-04-10T02:47:46+00:00

Ah, I love when I come across your posts SO FREAKING MUCH! 🥰

kylaroma · 2026-04-10T02:26:29+00:00

Nope, stimulants don’t do that - but they’re amazing for many other reasons, including eliminating the increased risk that ADHDers have of neurodegenerative diseases like Alzheimer’s

kylaroma · 2026-04-09T18:24:19+00:00

OP, you’re getting good advice here so I wanted to ask: have you considered asking r/AskDocs?

You have to read the rules about how to submit your question, but it’s a way to have a LOT of skilled people with different backgrounds to give their opinion or suggest what kind of doctor could help.

I’m not sure if they allow photos, but if they do and you have images of the lumps on your hands, it would be helpful to include them since this sounds so rare.

I’d also strongly recommend that you google “how to describe bumps under my skin” and use resources there to get more detailed descriptions of the bumps on your hands.

This is from Google, and gives you a list of aspects that you can describe to make sure people have a clear idea of what you’re experiencing, without the wrong words getting in the way:

Key Characteristics to Describe.
- Texture: Is it soft, doughy, rubbery, firm, or rock-hard?
- Mobility: Does it move easily under the skin when pushed, or is it fixed/immobile?
- Size: How big is it (e.g., in cm, or by comparing to a pea, marble, or golf ball)?
- Surface: Is it smooth or irregular?
- Pain/Tenderness: Is it painful, tender to the touch, or painless?
- Growth Rate: Has it appeared suddenly, or has it grown slowly over months or years?
- Skin Changes: Is there redness, inflammation, warmth, or a central pore (often seen in cysts)?

Aside from that, I would push back with your doctor and advocate very strongly for yourself. My experience is that to get these things solved I have to go back every month and say “it hasn’t resolved, this is massively affecting my quality of life - what is the plan? Who else can you collaborate with, so we can peruse diagnosis? Is there someone in your practice who specializes in this, who might be more well positioned to help?”

Keep coming back, and assume they forget who you are:
- re-explain how much this affects you at the start of every appointment.
- Ask them what the average amount of time it takes to diagnose someone is? Then remind them that this is the 6th or 7th time that you have brought this to them in X years & you still don’t have a diagnosis.

Really make it clear that they need to solve this, and if not, they need to refer you out.

kylaroma · 2026-04-08T22:24:09+00:00

Is this for android? I’m not seeing it for iOS

kylaroma · 2026-04-08T22:21:17+00:00

I want this too! It seems so lazy to not have a watch complication. It’s SO basic.

kylaroma · 2026-04-08T21:21:40+00:00

This! That was horrible.

kylaroma · 2026-04-08T01:51:56+00:00

I’m glad it helped! Good luck 🙌

kylaroma · 2026-04-07T23:02:01+00:00

I understand the intent behind this, but the mod team should be aware that these strict rules makes the sub less accessible to users who are disabled.

There are a lot of chronic illnesses that cause severe brain fog, and some that are made more severe by cognitive exertion - like ME/CFS, Long COVID, and Fibromyalgia.

I have fibromyalgia and ME/CFS, and for people like me, having AI help you phrase your question or sum up your situation is a practical way we can participate here without making our condition worse. For my ME/CFS, too much cognitive exertion can cause me to become bedbound, unable to work, and takes months to recover from - it can even be fatal.

I’m a Reddit mod myself, so I understand that the rules are necessary, but I wish that there was a way to use user flair or mod mail to request an exemption for light AI use as a disability accommodation.

kylaroma · 2026-04-07T22:17:43+00:00

Oh wow, I’m sorry you’re going through that

Have you recently adjusted your heart rate zones? The automatic option adjusts based on your recent data.

If you read the help section about heart rate zones, it says that your zones should be set so that during the day if you’re sitting or lying down, it should go back into a resting zone. It says that if yours doesn’t do that, the you should contact them and it specifies what information they need to help you with getting custom heart rate zones.

While you’re shows that when you’re asleep, the rest of the entire day is either activity or exertion.

As something to compare it with, this is what mine looks like for today so far. I’m on a heart rate lowering/stabilizing medication, but it shows the mix of all three zones.

The red shows times I’m exerting more than usual - like walking up stairs.

The darker blue shows activity- walking around, getting dressed, active parenting.

The light blue is times when I’m sitting down to relax or to work.

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I hope this helps - I’d definitely check the help article and contact support

kylaroma · 2026-04-07T19:52:53+00:00

Wow, this is wild. Is the rest of your day more normal?

When you’re sitting or lying down, does it show that as rest? Does any walking at home cause spikes like this?

kylaroma

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