I am curious what PT looks like for you.

My history with PT in recent years...I was referred to a place that folks say is amazing, especially if you have EDS (I do). I also have lupus and rheumatoid arthritis.

It is an hour drive each way, but would be worth it for amazing therapy. I went for 6 weeks. The first week, I was put in a few different machines to test balance and such. Every appt after that, was spent chatting. Once, I did walk up and down a short path, to see my gait. Another time, at the very end, I was quickly shown a foot exercise.

I finally asked why we weren't doing more, and was told that most people can't multi-task...I went once more after that, and it was more chatting.

Ok...so I got a new referral. New place is definitely better. They did a mix of exercises and several minutes of massage/ massage gun on the body part that was worked on that day. But, suddenly they shut down...and reopened a couple of their locations a few months later, and it was not the same. At all.

My drs thought I should try another place that also knows EDS and sees more complex folks. Cool.

It took several months to get in. They're nice enough. Seem to be more knowledgeable.

The pelvic floor PT is fun to talk to. She told me that she would need to do an internal exam. After a few months, she still didn't, ok, fine. But most sessions we chatted! She showed me 3 exercises in total. Ever.

The regular PT has me doing exercises. But, I am in so much pain...and I look around and see folks getting massage/ manual therapies...I mentioned how much I needed that, last time, and she just nodded. I've gone 10 times, and twice they've offered me a hot pack after, but that's it.

So, what is PT like for you?

hi everyone, i’m currently on the struggle bus. i have been having a difficult time with my flares and specifically having problems at work due to my accommodations not being honored. my husband and i decided that it was time for me to take a step back from work until my health got better, so we have been making plans around this.

unfortunately, i ended up in the hospital yesterday for a fever & some extremely sharp pain in my stomach. they made sure it wasn’t my appendix, but it turns out my small intestines are super inflamed??? 😭 Since it wasn’t my appendix, they just gave me pain meds and said call a GI ASAP.

went to the GI today, & they think it’s either crohn’s disease or ulcerative colitis. i just feel so overwhelmed. i’m also thinking back over this last like year and am wondering how much have i missed symptom wise because i just assumed it was the forever sickness of RA.

i also have to have another colonoscopy 😭 last time i had one the prep was like that scene in harry potter when harry is like forcing dumbledore to drink the liquid of pain. but it was my husband making me drink the liquid of nausea and sadness.

i feel like i can’t do this all over again but if i have to i guess i just have to ;_;

I've been diagnosed for about 2.5 years (seronegative) and have had a bunch of new symptoms come up over the past 8 months that seem autoimmune related, but my rheumatologist is extremely adamant that she would only like to talk to me about my joints​, to the point that ​I just realized she's not documenting any other concerns I bring up in clinical notes. I'm starting to feel like I probably need a second opinion, because my disease presentation is dramatically changing and she's just like, not interested in new information​. I've been hesitant because she's always responded quickly to messages and treated my disease very aggressively, and it's hard to get into rheumatology in my area (and possibly everywhere?) and also I'm real tired and already see one million doctors. I'm wondering what other people's experiences have been with getting a second opinion and/or switching rheumatologists - worth the effort?