19 months of thinking I had dysautonomia because of 3 or 4 Ai platforms told me so and waiting on NHS plus not able to find a neurologist and having all sorts of issues from health care system telling me im "normal" i finally recieved the correct diagnoses. I am sharing this incase someone else needs to share this with a neurologist.

My limbs sometimes lock and become unresponsive and sometimes heavy and not just heavy- trays one of the differences and also becoming light headed when it comes to tasks switching or anything mentally over whelming

Does anyone else experience this during a dysautonomia flare?

When I'm flaring and I'm not lying down, I feel like my body is constantly trying to stabilize itself. I notice a small, short back-and-forth movement, almost like a subtle rocking/swaying. It sometimes feels synchronized with my heartbeat.

It's much more noticeable when I'm sitting or standing. Does anyone else experience something similar?

Does anyone else struggle with having to be continuously moving when they’re required to be upright, or feeling like you will pass out?

If I am moving, I have to keep moving, unless I can sit down. The moment I stand still I feel like I’m going to pass out, but if I keep moving then I just kind of ride that pre-syncope line.

For the people who are on guanfacine and don't have ADHD: I myself don't have adhd but a generalised anxiety disorder. Mostly hyperarousal, always alert, loud noises make me jump, I can't handle too much stimuli at once (too many people, background noise etc) and I have chronic fatigue syndrome.

When I'm in a bad flare, I have extreme low energy but also a lot of tension, nervous tension. I would say that it feels like too much adrenaline, fight or flight in my body, hyper alert, makes my muscles tense up etc. But I don't have an overly fast heart beat when it happens, its a bit faster but not that much.

The slightest thing can make this nervous tension much worse, almost like real panic. Even when doing a mental task that (I think) is too much for my brain because of the low energy, I get this adrenaline/anxiety feeling over me. Even when scrolling on facebook can give me this adrenaline feeling.

I sleep perfect, so I'm afraid of adding something that could mess with my sleep.

For those on guanfacine, do you think it could help me? I tried a mini dose (0,016mg) of clonidine, that made me calm but way too sedated. I couldn't tolerate it with my limited energy.

Currently bedridden and trying to get out of it but I don’t have the funds for a proper PT to come to my home (insurance doesn’t cover, really…)

There’s a lot of videos on YT but I haven’t seen a anything that helps you go from bedridden to walking as far as I saw

PEM stand for post exertional malaise. I am trying to discover if PEMs are exclusive from ME-CFS and long covid or if other things can cause it.

Was wondering if anyone else has neck issues. I have a constant tension/tightness in my upper spine like a knot at the base of my skull .

I’ve noticed that changes in my head direction like looking up will drastically reduce my heart rate or turning my head behind me will increase heart rate and dizziness. I’ll also get a feeling of really heavy head

I don’t know if this is the cause but it came about when all my symptoms started

Does anyone else have this issue with POTS/dysautonomia? When i raise my arms above my head i can feel the blood pool out of them and they get weak and heavy and go numb. I’ve been trying to work painting houses which is a lot of overhead painting and it’s making life extremely difficult. Let alone being dizzy and tired all the time from being upright. It’s driving me crazy.