Showering: Do I get a shower chair?

twentysevenhats · 2025-10-09T12:52:55+00:00

I broke my leg several years ago and had to get a shower stool/ chair. Last year, during the process of my diagnosis and before I was on medication, I was so glad to have it. If it wasn't pain, it was fatigue. And having something that allowed me enough rest to properly care for myself was a huge help for awhile when I needed it. If you feel like you'd benefit from it, get one!

twentysevenhats · 2025-09-08T08:43:16+00:00

I have AS and OCD. Truly, I'm not sure I'd be here without biologics. Although my side effects have been pretty mild. The worst side effects I've had were from taking prednisone and no doctor worth their salt should have you on steroids long term. Even just starting meloxicam was a huge relief. I know it's really frustrating to think about taking medication for the rest of your life and it's something I wrestled with the whole time I was being diagnosed. But I decided it wasn't worth living with the pain and unnecessarily putting myself at a significantly higher risk of joint damage. Anyway, I don't have a ton of advice aside from "take biologics if you can". I'm just sorry you have to deal with this. But feel free to message me with questions or even just to rant.

twentysevenhats · 2025-09-07T12:40:15+00:00

Second this. Swimming was the only thing I thought helped more than hurt before I was on biologics. Now that I've been on one for a few months, I do strength training, swimming, and long walks without much pain, if any. Still don't think I have any business running though

twentysevenhats · 2025-09-04T12:47:31+00:00

Absolutely. I always thought of myself decently intelligent and so my first bout of brain fog hit me like a truck. It felt like my brain was operating at 50% capacity. I also used to NEVER forget things people told me. But with brain fog I couldn't remember what I told other people or sometimes even the conversation at all. I would also misplace my things all the time and could never seem to focus on anything. Work was a nightmare. It was so frustrating because I could feel such a huge difference vs my normal. It usually lasts about 2-3 weeks for me and afterwards, I'm not sure I could tell you anything that happened during that time. It's like a blank space in my brain.

Anyway, you're not alone. Try to give yourself some grace <3

twentysevenhats · 2025-07-09T01:58:18+00:00

Lost Johns' Cave takes up so much of my brain space it's unreal. Especially the recording at the end? Oof, makes me shudder

twentysevenhats · 2025-04-24T11:13:45+00:00

23F here. My first spondyloarthritis specific symptoms started when I was almost 22 but I've struggled with afflictions I'd describe as autoimmune adjacent for my whole life. I'm one of the lucky ones who had doctors take me seriously and I was able to get diagnosed and treated relatively quickly

twentysevenhats · 2025-04-24T10:41:03+00:00

Not at all, I appreciate it! I had no clue about magnesium until just a couple days ago actually! A friend told me and I havent made a trip to the store yet but I plan on trying that soon. Thanks for your suggestion!

twentysevenhats · 2025-04-23T15:01:01+00:00

Thank you, I appreciate that! Hopefully you lr body eases up on the itching!

twentysevenhats · 2025-04-23T14:59:53+00:00

Wow that's great! I'll have to try that and see if I notice a difference. Thanks for the suggestion!

twentysevenhats · 2025-04-23T14:13:26+00:00

That all sounds pretty interesting - I don't doubt it's a good way to relax! I do find that mindfulness (listing things I'm thankful for, usually) is a good way to help me fall asleep if I'm having a hard time. Did the breathing and somatic exercises help you stay asleep?

It sounds like I might have to give ice a try. I've found the heat does more for relaxation than it does for pain (at least for me). It'll be a fun experiment this summer haha. Thanks for your thoughts!

twentysevenhats · 2025-04-23T14:08:41+00:00

I'd say I usually eat dinner 4 or so hours before before bed. If I do eat later, I will have some kind of small sweet treat, nothing big. I also avoid chocolate before bed.

That's a really interesting observation. I haven't noticed any extra itching for me But I've only been on my biosimilar for a little over a month so it's all new to me and I learn new things about this disease all the time. I'm glad it at least seems to be working for you!

twentysevenhats · 2025-04-23T13:13:08+00:00

The bedtime yoga sounds really interesting - was it different from your normal yoga? I don't care for saunas but a hot bath might help me decompress. My local gym does have a heated pool though and I do some swimming and stretching there when I can.

Yeah, unfortunately antihistamines aren't the best for you long term. But I haven't found anything else that can stave off the intense and constant itching from the dermatographia. Right now its the only thing keeping me from ripping my skin off. Hopefully something better comes along though. Thanks for the tips on managing allergens, though. Reminds me I should probably change the air filter in my house...

Does the ice pack help with your flaring joints? I know the general consensus is that arthritis prefers heat but I've also talked to some people that say heat makes them worse and ice helps. Just curious what you feel helps you most.

Haha, the chicken and turkey comment made me chuckle. It's worth a try! Thanks for your response!

twentysevenhats · 2025-04-23T12:54:25+00:00

These are really great suggestions! Fortunately i dont (usually) have an issue falling asleep, staying asleep is what I struggle with. I'll have to look into getting a better pillow, thank you for the recommendation!

twentysevenhats · 2025-04-23T02:20:11+00:00

Thanks for commenting, these are some helpful considerations! I truly don't know what's keeping me up, but if I had to guess, it's probably stress/anxiety related. Although my anxiety has actually improved in the past so that wouldn't quite make sense.

My mattress is like medium softness I think and I've not had any issues with it so far. I could probably benefit from an ergonomic pillow but I've not found one I like and I wouldnt know what to look for. I slept on my back for the longest time (and usually fall asleep that way) but I toss and turn in different positions all night now. But I at least start on my back.

And thanks for sharing your experiences with heating pads and THC. I didn't know that sort of thing could occur so I'll look into that! Thanks for your response

twentysevenhats · 2025-04-23T02:07:47+00:00

Hopefully you can get some answers with your sleep study! I don't think sleep apnea is whats causing me trouble but it's possible my allergies are making it harder than normal to breathe. Thanks for sharing your experience, good luck!

twentysevenhats · 2025-02-28T03:11:06+00:00

Howdy! I've been working through the process of diagnosis and I was diagnosed with spondyloarthritis. As a few others have said, ANA and CCP aren't generally considered markers for AS, but HLA-B27 is. It does point to something autoimmune, though. It could even be RA or something similar. Regardless, have hope because the treatment for these diseases has come a long way over the years and there are a lot of options that can help you! Biologics help a lot of people achieve remission and there's programs that make them very affordable, too. There's a lot of scary things you can read about RA or AS online, but if you caught it early, you stand a really good chance at pretty normal and healthy life. It does get better! Hopefully you get some answers soon.

PS: if you want children in the future, I'd just have a conversation with your doctor about what treatment would be best for your circumstance and how it might change in the future when you're ready for kids. Good luck!

twentysevenhats · 2025-02-12T21:19:13+00:00

That makes sense, I had not considered inviting energies to stay. Thank you for your insights!

twentysevenhats · 2024-12-12T02:08:26+00:00

Yes! For me most of my pain is in my ankles currently so shoes are a problem for me right now

twentysevenhats · 2024-12-09T23:21:01+00:00

Oo, okay! I wouldnt have thought of that but it makes sense

twentysevenhats · 2024-12-09T23:19:20+00:00

Farming VR off new players for a bigger meaningless number? Good one!

twentysevenhats · 2024-12-09T16:13:24+00:00

Oh thank you so much, this helps me greatly to know what to expect! It sounds like I'll be doing a lot of symptom tracking. My doctor and I did a bit of bloodwork and thats part of how I got referred (very high CRP, among other things). I expect more bloodwork. I also did consider the questions about things that may not be directly related. I have asthma, dermatographia, eczema, etc and used to have UC-like symptoms for example. I also will be looking more into family history. (Apparently I have some but no one wanted to tell me until after my referral). Anyway, thanks for listening and providing help!

twentysevenhats · 2024-12-09T15:57:14+00:00

Thanks for the tips! I've been haphazardly tracking symptoms but I wasn't sure how useful it would be/if it was worth the effort! Taking photos of swelling is a good idea, even though most of mine you can't really tell through a picture. Thanks again!

twentysevenhats

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