u/a-brain-on-fire

In Japan I came across a cultural phenomenon called "Radio Taiso". Japanese people stretch for 3.5 minutes before work/school everymorning. Together. As a group. From the time they are school children to the time they are old folks.

3.5 minutes of non judgemental non competitive, at your own pace/ability group stretching. It's not particularly difficult or meant to be. The opposite. You're basically just shaking it off so you can start your day.

I decided I could/should do this, so from now on for 3.5 minutes every morning while I'm the most stiff I'm gonna do radio taiso stretches over youtube watching a bunch of Japanese dudes so they can show me the ropes. ​

Figured I'd share for anyone looking for more tools in the toolbox.

Anyone have a trick for exhaustion? I need energy to take care of myself plain and simple. Need it to be able to live some kind of life. There has to be a solution somewhere.

I can drink caffeine and just pass the fuck out now. I can drink 2 pots of coffee and go to sleep an hour later.

I've been in a flare all year. Basically going in and out of them.

I'm fuckin tired. My quality of life is dogshit. Its hard for me to take care of myself. I'd rather go the assisted suicide route than go into assisted living route because I can't stop flaring at 40.

Are there meds for this?

I keep having really bad flare ups. Steroids beat it back a bit but it just gets worse when I finish them. Biologics help my pain and stiffness but I'm turning into an itchy less funny/talented deadpool. My whole life kinda sucks right now.

I have really bad ptsd. Some things that have been going on lately have been extremely triggering for me. It's the only correlation I can come up with. I don't use a lot of chemicals. I didn't change any detergents. Pretty much eat the same food minus a lot of produce because I don't want to shit myself to death.

Anyone been able to pinpoint flare ups to stress alone? Anything I'm not thinking about? I already have great mental health healthcare, but I could probably go for tuneing out current events for the foreseeable future.

Why do steroids work to calm my symptoms when stress hormones also make my symptoms worse?

I've been on hadlima a few months now. It seems to be calming my pain. I've been on and off and now on again steroids the last few months.

My lymphnodes are swollen and have been all year. Up and down. I take steroids they go down. I get off they go back up. I get reflashes of my rashes and I go back on prednisone.

None of this makes any sense. My psoriasis is fluid. Always getting better and worse sometimes at the same time. What does stability in both psoriasis and arthritis take?

I flex the muscles in my inner ear as a stim. I've done it since I was a little kid. Maybe its why I find brown noise so helpful as it's a similar sound that's produced.

I've had an active and bad skin flare this entire year. It's been slowly receding before I got on hadlima. My loading dose schedule was 2 injections on day one, and an injection one week later. Then every 2 weeks from then on.

I just hit my first 2 week stretch, and my skin went from healing to getting worse. I went from having one swollen lymphnode on one side of my neck to having another on the opposite side (rash is on the back of my head creeping down my neck again). The one lymphnode finally started going down. The other I just noticed this morning.

Is any of this stuff normal?

Is weakness normal post treatment? I have energy for the first time in a long time. I'm also weak as shit. I did some super light yard maintenance and my hand/arm was like jiggling jello. Like my legs used to get from running for an hour on a treadmill.

I even got an inflatable hot tub set up. Being immersed in hot water helps and I think about it all the time, but my big ass can't fit in these bathtubs. So I to hell with it. I'm sick. This helps. I have the space. It will bring me a great deal of peace.

From now on its how I start and end my days.

I'm on biologics for the foreseeable future. I have a tentative diagnosis of psoriatic arthritis. Had a super bad flare up at the beginning of the year with psoriatic complications.

I've been through 10 years of tests. Blood tests for biomarkers. Looking for abnormal bloodwork or any indication of whats wrong. Xrays. MRIs with and without contrast. To the point that I just thought it was somatic until this year and putting the psoriatic complication together.

My latest MRI is negative. Whats wrong with me? Is it still PsA or is it something different?

I read a lot about peoples experience with hadlima (humira). I got my hopes up about being fit for duty the day after.

I'm in a bad flare at the moment and that might have something to do with it.

Otherwise: when I slept I slept through the night which is not very common for me. 8 hours? Pretty much unheard of. Rolling over in the night wakes me up, and I moan/wince/make guttoral noises.

It still hurts when I roll over, but a little less so. My body is still sore and stiff when getting around, but I feel like I have a decent amount of energy today vice having little to no energy normally.

So far just small improvements if its not the placebo effect. Hopefully I start feeling much better in the coming weeks and months.

Thanks for listening.​

I've had to hold off on my hadlima injectections because I have an MRI scheduled for today. Seemed the best course of action was to wait so the meds don't interfere with diagnostics. Theres no real debate about psoriatic arthritis just the type and how much or little damage has been done. What to do about whatever information we get.

It feels kind of surreal. I could wake up better tomorrow. I kind of accepted that I'd just continue to degrade. Never considered the idea that injections could take my pain/fatigue away. This started in my late 20s. I'm 40 now. I used to get waves, but its been pretty consistently bad the last year or so. I've had an active flare since the beginning of the year.

I have a single ativan the doc gave me for the MRI. I'm still not looking forward to being stuck in a weird noisy coffin, but I am looking forward to my anxiety melting away for a bit. I have complex trauma. It's a lot to carry around, and it's a welcome break from the day to day.

After that I'm going to get some Japanese food with a friend, and I'm going to jab 2 autoinjectors in either side of my stomach, and probably pass out.

Heres hoping I wake up better tomorrow. Heres hoping I can do the things I haven't been able to for a long time. ​The weather is perfect for hiking. And smoking meat. Gardening. Laughing with friends well into the night. Get back in school. It's a good time to be able to pick it all back up and carry on with my life.

If I wake up better tomorrow.

I was recently diagnosed, and I'm starting TNF inhibitors in a few days. I'm not tore up about having PsA. I've had it a long time. Now I'm at a crossroads in my life. I went so long without answers or real treatment that I don't fully understand better, and how that applies to me going forward.

My worst symptoms are pain and fatigue that can go from mild to debilitating, and its mostly been on the debilitating end with a few good days/weeks sprinkled in there.

I'm a 40 year old veteran and I want to get back to work but I don't have the slightest idea of how to get gainful, and stable employment with my condition. I'm about a year away from an emergency management degree that I'm now reconsidering because of the stress aspect (ptsd/rheumatic death loop).

I really just want to work in a plant nursery/greenhouse type of situation. Low impact, low stress, spiritually rewarding. That stuff doesn't pay.

No idea. Any tips would be great. Thanks!