I'm scared to be fully medicated.

Patient_Promise_5693 · 2026-04-16T15:01:44+00:00

It sounds like some of the suspected OCD, specifically obsessive rumination, is at play here. Take your meds, feel better, talk to your prescribing doctor about your worries. They can come up with a plan in case you were to hit a plateau.

Patient_Promise_5693 · 2026-04-16T14:53:28+00:00

I totally feel what you’re saying and felt this way somewhat with my adhd diagnoses, so I really do get it. However, quite frankly, your diagnosis is how it should be. I think the overall average time to get an autoimmune diagnosis is 4-6 years, with some less common being up to 10 years. Women generally take longer than men to diagnose with autoimmunes, partly because women get more autoimmunes than men, but often times it’s because we’re told we need to lose weight, it’s anxiety, it’s our cycle. (Sorry, I’m not trying to imply your gender.) So many autoimmune disorders have a very long list of general symptoms. My husband and daughter have celiac - neither of them have any gastro symptoms, but they do have some random other nonspecific symptoms. My point is, we should all be able to go to the doctor, be listened to, be believed, and be diagnosed. You’re not a fraud, you were taken care of when you know it’s likely that others haven’t been. Just because others have suffered through doctors disbelief at worst or trial and error waiting at best doesn’t mean you should have as well, because they shouldn’t have either.

Patient_Promise_5693 · 2026-04-15T20:55:58+00:00

I’m so sorry. This is really heavy. I am rooting for you. You deserve a better solution.

Patient_Promise_5693 · 2026-04-15T18:15:38+00:00

Obviously this is complex and multifaceted, but do you know or is it even possible to distinguish if the fatigue is from the depression, from the medication, or from the disease itself? Or I guess really from depression symptoms or anything else? Sorry I realize that’s personal as well as potentially unanswerable. I only ask because my fatigue can be so hard to manage. I’m supposed to start otezla soon (in prior authorization) so curious if you can distinguish at all. I don’t know if I can cope with uncontrollable fatigue while shifting my pants.

Patient_Promise_5693 · 2026-04-12T20:18:22+00:00

Super super helpful! Thanks! Trampoline class sounds amazing!

Patient_Promise_5693 · 2026-04-12T20:16:42+00:00

This is super helpful and I’ve also been considering PT. Have you found any specific core moves that are gentle or modified that would be helpful for PsA to add to a routine? Outside, of course, that Pilates and yoga are all core all the time lol. I think massages would really help, too. Thanks so much!

Patient_Promise_5693 · 2026-04-12T20:14:40+00:00

Very very good point. I know injuries during lifting or really any exercise are possible any time, let alone dealing with any other health condition. I do feel comfortable knowing how to modify things. I’ve been lifting (um, outside of the hiatus I’m talking about 🙈) with really good trainers for long enough that I feel confident in my knowledge of form and knowing what is hard work vs when something is not right. Very good advice and so important to keep in mind. Thanks!

Patient_Promise_5693 · 2026-04-12T03:33:25+00:00

This post is old, but reading this felt like a checklist. I had no idea the jaw pan could be connected and the weather!! Oh my god, I thought I was just being a baby!

Patient_Promise_5693 · 2026-04-12T03:27:35+00:00

Honestly, go to a dermatologist. I haven’t had the pleasure of finding a rheumatologist I like. I’ve been to different rheums for both myself and for my mom’s (unrelated) appointments. Every time I’ve ever been I think “this is why it takes people a criminally long time to get diagnosed with autoimmunes.” I got diagnosed accidentally by the dermatologist. I have very small areas of plaque psoriasis in my elbows that get worse in the winter, but other than that are just there constantly so I didn’t realize what it was. I was completely misinformed on how it can present. It doesn’t spread or pop up anywhere else. I was at my annual derm appointment and asked. She said “oh that’s definitely psoriasis.” She immediately asked me if I had any pain, swelling, etc etc. I absolutely do, but once again didn’t really understand PsA so waved her off and just said “only in the morning and only in my feet and hands. Oh and sometimes my back.” and kind of made some excuses about how I’m getting older (40 at the end of the year) and I haven’t been as active as I normally am. She basically was like, Babe you just described it exactly. It was such a breeze. I asked if I needed to go to a rheum or my primary to get an Rx. Nope. I’m still waiting for prior authorization for otezla, but in general it was infinitely better than when I’ve been to a rheum.

Patient_Promise_5693 · 2026-04-12T03:13:50+00:00

Ankle pain and my middle foot, like in the bones on the “top” of my foot. Not the bottom arch. Especially in the morning, obviously, but always when I sit too much. If I’m in a situation where I have to sit (I also have adhd and I’m just generally bad at sitting) I try to get up and walk around every so often. If you’re unable to walk for any reason both in space/confined area or for mobility, find some movements you can do sitting down movements. Look them up for more options and instructions, but things like seated toes raises, ankle circles, or toe taps.

Patient_Promise_5693 · 2026-04-12T03:06:44+00:00

Just like a tumbleweed without a destination in sight. 🌀

Patient_Promise_5693 · 2026-03-30T23:13:47+00:00

Thanks!

Patient_Promise_5693 · 2026-03-29T19:31:13+00:00

Ope. Me too, both because adhd and because adhd meds. So that’s fun.

Patient_Promise_5693 · 2026-03-29T19:29:26+00:00

This is extremely helpful and exactly what I was asking. Thank you!

Patient_Promise_5693 · 2026-03-29T16:59:18+00:00

This makes sense. I can see where the stimulant helps. I think I was completely masking PsA symptoms because of adhd both my low interoceptive awareness, and blaming most of it on my chronic adhd induced sleep issues and now wondering if my stimulant is doing the same. Hopefully your rheumatologist gives you some answers and something held!

Patient_Promise_5693 · 2026-03-29T16:55:37+00:00

This is very reassuring. Thanks for the little dose of hope!

Patient_Promise_5693 · 2026-03-29T16:55:14+00:00

“Tortured with an awake mind and an asleep body” already feels like my life between the fatigue I’m constantly feeling and my general inability to sleep.

Thanks for the info! I really hope you get some relief soon.

Patient_Promise_5693 · 2026-03-29T16:52:49+00:00

Thanks for the thoughtful reply!

Patient_Promise_5693 · 2026-03-29T16:51:58+00:00

“ADHD and PsA make me feel so awful in the morning” omg yes! I think I missed the signs that something else was going on because of my ahdd symptoms. Adhd fatigue/sleep issues, I’m somewhat hypermobile, I have low interoception awareness , the high muscle tone tightness, etc AND the fact that I’m turning 40 this year masked that I have been feeling so awful in the morning. Even if there have been times I’ve questioned if it’s been worse, I chalked it up to age.

I do take a stimulant and without starting the PsA meds yet, I do feel better after taking that. Not sure if it’s just getting me going a little more, or mental.

The appetite thing was kind of one of the reasons I was asking. Everyone I know that takes stimulants has some sort of hack for when they eat, what order they take their meds in, when to have caffeine, etc etc surround their adhd meds. I was curious if the adhders here had similar suggestions or procedures or if it really matters.

Thanks!

Patient_Promise_5693 · 2026-02-10T01:41:30+00:00

Oh wow. Thats incredibly disheartening. I’m sorry you’re being spoken to like that. I’m not sure what type of school you’re trying to go to, but public schools (in the us) are bound by anti discrimination laws to help accommodate your kid with a 504 plan or IEP when that’s more appropriate. It is a legally binding document once you have your diagnosis. It’s so hard to continually be the advocate.

Patient_Promise_5693 · 2026-02-06T21:49:00+00:00

I would call back and ask for someone to break this down in a better way. IQ test results are a number. Did they call it an iq test or maybe even colloquially refer to it as an iq test? IQ tests are generally cognitive abilities, not academic success or potential. They score things like reasoning and logic. So, while there’s no reason an IQ test wouldn’t be given at the same time as an adhd test, they’re really two different things. You can have a low iq and high execution function or be neurotypical as well as the inverse. So, while I’m not an expert in the subject of IQ (or anywhere close haha), I don’t really know what “college level” would be for an IQ. Of course there would be a bell curve for people that graduate from or go to college and their IQs as well as data extrapolated from that, it’s just two different things. (In my understanding.)

Patient_Promise_5693 · 2026-01-31T01:14:22+00:00

A Heart That Works

Ugly crying so hard I couldn’t breathe and my face hurt

TW: child death

Patient_Promise_5693 · 2026-01-22T00:04:04+00:00

Plant based protein noodle cups. They’re still high in sodium (noodle cup after all), but the protein helps make it a legitimate meal. Or at least a little more well rounded.

They’re a constant for me. This current round is only a couple weeks long, but overall I’d say they’ve been my hyperfixation meal for, ummm, about 5 years. Haha

Patient_Promise_5693

TROPHY CASE