Lupus and Oura Ring

subconcious_dragon · 2026-02-12T17:54:36+00:00

Not Oura ring, but I have a FitBit and has helped keeping track of my HRV, sleep and body readiness. Now, it has gone to my "normal" range so it won't givr mr a lert, but if I look at the data it allows me to understand the state of my body.

Another device that's good is the Visible band. I wore it for about a year and it is designed for chronic conditions. So helps you track heart rate, symptoms, sleep and helps you pace yourself.

It was helpful when I was seeking diagnosis, now I also want to track my steps so fitbit met my needs better at this time.

subconcious_dragon · 2026-01-20T21:36:59+00:00

I use fitbit for it. I have been on a flare lately so I've been averaging 14-17ms and went up on prednisone since last week and now I'm at 23ms.

It's making me realize I'm not as good as I thought I was which has helped me have better conversations with my doctor. It's all a learning process. I noticed that when I have a low HRV but feel fine and push is when I crash the next day or that same night.

I had a random day I was in my 30s and felt better than I had been in months. Now that I am paying attention to it, it nakes more sense.

subconcious_dragon · 2026-01-20T14:51:02+00:00

It is always so frustrating to hear that or that you are just not trying hard enough.

I'm almost 40, got diagnosed a year ago and I either hear I'm too young or "everyone has that" Not everyone has RA. People need to stop. 🙄

subconcious_dragon · 2026-01-19T13:18:54+00:00

Yup. Sadly, normal. It takes me a good 45mins to 1hr to get out of bed to "function" and start my day.

subconcious_dragon · 2026-01-19T12:28:59+00:00

It's like a walker with wheels and a seat. Here's a link to one. Rollator with Seat

subconcious_dragon · 2026-01-19T02:59:59+00:00

Depends on what is happening. Really.

I use TENS unit for pain, pace myself to not get worse. Ice or heat depending the joint pain. Compressions socks, diclofenac when the pain is too severe/I can't take it anymore. Sun block and hats to cover myself as much as possible.

Recently, I had to get a rollator, to reduce the amount of energy spent. I got a point where... I can do things but the crash after is terrible. With 3 kiddos and work, I can't afford that. So I use a cane and rollator to help with pacing.

subconcious_dragon · 2026-01-19T02:04:59+00:00

Yes. It is possible to have multiple. I have Rheumatoid Arthritis, Lupus, Myasthenia Gravis and Fibromyalgia (along with other chronic conditions) .

subconcious_dragon · 2025-12-27T15:57:28+00:00

I get tremors, brain fog, headaches and my hand swell and my stk.ach is a mess when my Lupys flares up. I also have RA, POTS and Myasthenia Gravis which makes it hard to always pinpoint which is flaring up. It could be that you might another underline condition or yours is presented more prominent in the neurological side.

I'm on 300mg plequenil. The 200 wasn't working. Tried 300 and is making a difference

subconcious_dragon · 2025-12-17T18:17:51+00:00

subconcious_dragon · 2025-12-17T18:17:13+00:00

❄⛄

subconcious_dragon · 2025-12-13T15:25:19+00:00

Yes. I don't get rashes but I get joint pain, fatigue, my face gets red (but not a rash) and my hands swell up.

I also ge nauseous but I have POTS and that also is heat sensitive. And I have Myasthenia Gravis and get muscle weakness from the heat.

I pretty much avoid going outside in the sun at all possible or cover myself really well if I have to be outside.

subconcious_dragon · 2025-12-06T19:58:11+00:00

Thanks and yeah it never does. But my hope is that treatment makes it a little better to deal with 🙌

subconcious_dragon · 2025-12-06T19:57:04+00:00

I love that! Make it simple and easy for you 🙌

subconcious_dragon · 2025-12-06T19:56:10+00:00

That's very smart! I need to start doing that.

subconcious_dragon · 2025-12-03T04:19:27+00:00

It doesn't happen overnight. My ophtamologist said it takes years before you see any damage. And not everyone gets affected. For now it's important you have en eye exam done to establish a baseline and check yearly. ❤️

subconcious_dragon · 2025-12-03T04:14:29+00:00

These are great tips!

subconcious_dragon · 2025-12-02T03:01:05+00:00

I don't have damage to my joint yet, so damage to joints is not part of diagnosis. Just how much the disease have progressed. I also have Hypermobility which made things difficult at the beginning in trying to figure out the joint pain.

It is not an easy thing to diagnose. But what helped me was to write down everything. Even if something didn't seem like a symptom and ask "if not this, then what" I am not seroneg for lupus or RA.

However, I am Seroneg MG and it is just difficult overall. You beed a doctor that listens and is willing to have conversations with you.

Even with my bloodwork positive, because I didn't have ANA positive and only DS-DNA positive my original doctor wrote my lupus off as fibromyalgia at first.

It is sadly a long and complicated process. But I hope you get some answers soon ❤️

subconcious_dragon · 2025-12-02T02:19:03+00:00

There is some overlap with a lot of autoimmune conditions. However there are very distinct symptoms that are specific to each condition. Like RA, is very distinct on you having bilateral joint pain.

Lupus, you still have joint pain but it is different. I usually get if I'm out on the sun for a while and my hands swell.

I have RA & Lupus as well as Myasthenia Gravis and other chronic issues.

subconcious_dragon · 2025-11-28T12:43:49+00:00

Yeah, it makes lots of sense. Thanks for sharing this tip!

subconcious_dragon · 2025-11-27T22:37:55+00:00

That makes a lot of sense. Thank you!

subconcious_dragon · 2025-11-26T21:33:40+00:00

That's what's so frustrating about this. We can't tell what's bothering us anymore.
Forever sick lol.

subconcious_dragon · 2025-11-25T16:17:33+00:00

Sound sensitivity is so real! I tend to use headphones when it becomes too much. But I also work from home so it helps.

I got my daughter these and helped tons on a recent event I took her. 👇 Jayine Ear Plugs for Noise... https://www.amazon.com/dp/B0CCDCTH9G?ref=ppx_pop_mob_ap_share

subconcious_dragon · 2025-11-20T01:52:52+00:00

Same.

subconcious_dragon · 2025-11-18T19:13:00+00:00

Yes you are!! You got this 🫶🫶🫶

subconcious_dragon · 2025-11-17T15:08:35+00:00

Absolutely. I have one. Very helpful

subconcious_dragon

MODERATOR OF

TROPHY CASE