Update on LED

So, I’ve been going a bit crazy lately. Not quite psychotic, but definitely not healthy. Not paranoid anymore, almost no negative symptoms, but my ADHD has also been insanely difficult to manage. The Rexulti has me doing a lot of really reckless things, especially with money. It’s pretty scary.

So I talked to my pdoc last week and she tapered me off the Rexulti and back on the perphenazine for now. Then next appointment in 2 weeks to decide if we want to try adding in a mood stabilizer. I don’t think I need a mod stabilizer, though, I just need to not be in extreme pain 24/7.

Anyways, I had an MRI with hip arthroscopy and fluoroscopy and it showed that (likely due to repeated dislocations) I’ve got excess bone growth in my acetabulum (the socket part of the ball and socket hip joint) causing severe impingement of the labrum. It hurts like a ■■■■■■■■■■■■■ ■■■■■ and I can barely walk or sleep. It’s miserable. I’ve been too close to suicidal over it a few times recently. Luckily I have an amazing doctor.

My heart failure is getting worse, though, and no one can figure out why. I finally got the call that I could make an appointment with the (only one in Indiana) specialist cardiologist I’ve been on the wait-list to see, so that appointment is in October. :raised_hands: Hopefully my feet last that long. :woozy_face: They’ve been turning black a lot lately. Getting warmer out, though, so that will help.

Meanwhile, Mx LED, myself, and Little LED were all diagnosed with autism. :grimacing: My partner and I suspected we were for awhile, but we had zero indication Little LED was until she started public school. We just thought she was ADHD. :person_shrugging:

Anyways, pain is better managed a bit, so hopefully I’ll be able to come on here a bit more. When the pain gets bad it messes with my vision, though, so I can’t really read. It’s lame af.


Wow, that’s a lot to be going through and to be in so much pain is so cruel and unfair,

I do hope things turn around for you soon @LED and we get to see you on the forum more often in the very near future.


Sorry to hear all of this @LED. It sounds like an awful lot to deal with all at once.
Please hang in there.
It’s always nice to hear from you, I just wish things were going better for you. Thanks for posting.


Feet turning black sounds a little disturbing.

I wish you well LED

Glad you’ve got a cardiologist appointment coming up.

You really are going though a lot. Hopefully things won’t get worse with your conditions, but better :sun_behind_large_cloud:


Oh man. I’m so sorry. My husband lives with severe pain 24/7 too. I see what he goes through. I’m so sorry you’re always in pain.

I hope you find out why your heart failure is worse. That really sucks. Hopefully it can get a lot better with treatment.

Is little LED getting help at school for the autism?

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Thanks. It’s a mess right now. But I’m on some new pain meds, and a strict pain pills schedule, and it’s definitely helping. Still not great, but a lot more manageable.

The foot thing is scary for sure, but we’re pretty sure it’s just the raynaud’s getting extra bad because I’m so stressed. I’ve got an ankle brachial index next week to make sure my blood pressure and circulation in my feet are still good.


She’s not, but she doesn’t seem to need it much at school yet. She’s pretty advanced still because we were homeschooling her, so she’s doing alright while she’s there and then falls apart at home.


You’re welcome :blush:


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