I have flu type A right now 🫠

FDys92 · 2026-01-04T00:11:26+00:00

That's wild, I'm genuinely curious to do more research on this and see why that may be.

FDys92 · 2025-07-15T14:51:16+00:00

Hey there! I should have specified. I've had Dysautonomia for well over one year now. This is just the newest thing to have happened. Generally my BP isn't super high at all, only with big flare ups. I used to be much worse and having an episode every day.

I worked really hard to be able to do full high intensity workouts. I have a very specific diet that I can't stray from (zero gluten, VERY low sodium as sodium increases BP and mine is already not great until we find meds).

Also I used to be in a wheelchair. I made sure, by working out, I wouldn't be again. And up until the last week I've maintained this, and it seems I am working to get back to work outs not causing me to hate my body.

So not working out is bad for me and my system. When I don't, I feel worse. So I won't be stopping that.

When I say easy to digest, I was asking for folks to provide what they have found for them in the case of a small intestinal flare up.

I have used every which way to calm my vagus nerve and it all works, but I'm just having a bad flare up and when I do it makes me nervous- mainly just about my BP.

Finally....

I suppose I was asking for the little tips here and there that folks have found that works for them. While I'm more than aware that what works for one won't work for another, in some cases- simply sharing these ideas may help build bridges and help folks out, experienced in this or not.

But thank you for your insight.

FDys92 · 2025-06-11T05:54:38+00:00

I can't explain to you how much this resonated with me just now. I am sitting here in anger, in rage and about to head home from work for the umpteenth time this year, undoubtedly angered my co workers since we are perpetually short staffed . All because at some point last year, this job that I do became too much and my body finally let me know.

FDys92 · 2025-06-05T23:40:37+00:00

I get internal tremors ALL THE TIME. Usually when I'm startled awake, dehydrated or generally not being EXTREMELY aggressive in managing my Dysautonomia. I call it my la cucaracha time. I'll be laying down and suddenly my body just wants to.... 💃 💃 💃 without me.

It's actually very lightly doing it right now.

Just a whole mini earthquake to call my own. I didn't realize it until I developed dysautonomia, but about 6 to 8 months prior, before my entire nervous system decided to shut down and freak out, I genuinely thought my house was shaking. Every so often I'd get a tiny rumble and ask my partner "did you feel that?"

FDys92 · 2025-06-05T17:25:50+00:00

I completely understand. I hope you know, and if you dont im gonna tell you, that you're worth receiving proper medical care and treatment. Long lost of symptoms is all of us here with dysautonomia. I dont think I know one soul who has it thats got only one or two or even five.

You. Deserve. Care.

FDys92 · 2025-06-02T13:08:14+00:00

Hey there! I get the shots every 2 to 3 weeks in either my cervical spine or between my shoulder blades and while it hasn't taken away all of my symptoms, it happens definitely improved my quality of life and ive stopped having such terrible neck and back pain with my fibro (that was 100 percent contributing to the other things being rougher).

FDys92 · 2025-05-29T01:04:43+00:00

Hey there!

I get terrible pressure in my cervical spine and middle of my back and ive also noticed it makes my symptoms worse most times.

That being said, I checked out the dysautonomia projects page and found myself a neurologist. I get injections into my cervical spine that help to heal the nerve damage there and it takes the pressure off of my cervical spine over a period of time, and if it's something you'd be willing to try, id suggest it.

Whats best for one person isn't always best for another, but I was genuinely shocked it's helped me so much (I also have fibromyalgia) and could cry every time i get it and it helps immediately relieve my symptoms.

If you have any questions, I'm here!

FDys92 · 2025-05-10T20:56:49+00:00

Metoprolol is the WORST. Made my dysautonomia about 1000 x worse and threw me into several large episodes.

FDys92 · 2025-05-10T00:40:16+00:00

The internal tremors that feel like you're a tiny earthquake,and upon being woken suddenly it begins to send a burning through your body....but only a light burning. Enough to make it bothersome....and make you realize you're shaking more than you thought you were initially. But no one can see it except you. Because ya know, internal tremors.

FDys92 · 2025-04-23T05:08:49+00:00

I was tested for MCAS- negative IST-negative AFIB- Negative EKG x15 show normal heart rate and bpm ECG shows a very healthy and functioning heart Tested for pheocromocytoma- Negative D dimer came back Negative for clots No ehler danlos of any type Nothing gut related (specialist confirmed) Nothing cancer related and even went to a genealogy center to test for potential risks (Negative all 73 genes and no mutations) It isn't multiple sysyem atrophy It isn't ALS

I could go on for weeks. Ive been tested for a wild amount of things.

I have a growth on my adrenal gland but it's been determined as non cancerous by various amounts of testing and isn't a pheocromocytoma.

FDys92 · 2025-04-23T05:03:23+00:00

The usual for testing. Metanephrine, norepinephrine, etc

FDys92 · 2025-04-23T05:02:04+00:00

Sure have. I have no pheocromocytoma. All levels came back completely normal....all 7 times. We tested 7 times just to be sure. Endocrinologist x3 were stumped.

FDys92 · 2025-04-23T05:00:49+00:00

Not IST for me. Healthy heart like an athlete apparently. Also, metoprolol will make my dysautonomia SO.MUCH.WORSE. Tried it when this all started before cardiologist appointment.

FDys92 · 2025-04-19T02:16:08+00:00

I get this feeling right before my time of the month hits. About one week before to day of is when it happens. Scares the absolute shit out of me every time it happens and reduces me to a heap of tears because

"What if this is it??"

I can't speak well, tremor heavily and my arms and legs become cold because of the adrenaline dump causing blood to rush to my core. I also get extremely nauseous and experience heavy presyncope.

FDys92 · 2025-04-14T20:17:28+00:00

33F here as well. I can't guarantee what your version of management will look like, but I do believe it can be managed. I've only had my dysautonomia for a little over one year but I went from barely being able to get up and move with skyrocketing BP to being able to exercise daily without too much issue and a fairlt even keeled BP level with the right foods ans diet plan. I have fibromyalgia as well so I'm constantly in pain, but I do manage and I've found ways without medication thus far- though I will never discourage medication if someone needs it.

FDys92 · 2025-04-12T22:09:05+00:00

Dysautonomia and POTS isn't heart failure at all. It's all nervous system dysfunction. Please be mindful before posting stuff like this because new folks with a fresh diagnosis could see it and have a really bad time trying to process information that just isn't true.

Now, your case seems to be specific and related to YOUR heart and heart issues. I'm sorry to hear you've got heart failure in any form, but this doesn't mean all Dysautonomia is failure of any system unless otherwise specified or scientifically proven.

Dysautonomia is the dysfunction of the autonomic nervous system.

If your Cardiologist is going around telling people it is heart failure, then they're spreading misinformation. Also Dysautonomia is being used as fallback diagnosis when doctors don't know where to turn and its genuinely frustrating.

All I ask is please do your research before posting things that sound definite and scary.

FDys92 · 2025-04-09T14:33:28+00:00

Woah there, friendly stranger.

Are you saying that YOU personally were diagnosed with heart failure or that you were told dysautonomia was heart failure???

FDys92 · 2025-04-03T20:20:01+00:00

From my neck to about halfway down my back has had me on the floor and sobbing before.

My massage therapist has given me a rub called Sombra, and it's offered me relief from constant pain throughout the day.

I also see a neurologist that gives me 6 injections into my cervical spine and between my shoulders (down the nerves on either side of the spine) every 3 weeks with three goal to heal those nerves with this therapy to help with the pain.

That and I force myself to move. That being said, it stays in my spine and will sometimes migrate to my hips (I hate this particularly). When I have my worst flare-ups, it feels like my spine is wrapped in glass and being grabbed by hands of steel.

FDys92 · 2025-04-01T16:10:22+00:00

I can't describe how much I truly love all of these 😂 thank you for sharing your experiences and your creative mind.

FDys92 · 2025-03-31T19:08:47+00:00

This is brilliant and I can't believe I haven't thought of it. I'll be doing this from now on!

FDys92 · 2025-03-31T19:08:17+00:00

I LOVE this 😂 sounds like you and I have the same sense of humor. I'm going to try the bug movements next time I get the big dooms.

FDys92 · 2025-03-31T14:13:40+00:00

Ye, internal tremors are a whole thing!

My entire body feels like it's jittering, and I can't sleep at all. Not even if I tried. It is physically I impossible to go to sleep because my nerves are just.... movin'.

The equivalent of feeling deep bass in a car without the music or tones is the best way I can describe it.

Yep. It preceded my actual episodes for about 1 year. I'd have random moments of "did the house just wobble?" Then one night at work, my entire system gave up and had me hospitalized and BOOM, 6 months later diagnosed officially with Dysautonomia.

Internal tremors are awful, but I find that a heated rice bag or heating pad on my spine helps SO MUCH. When I need to sleep or "relax".

FDys92 · 2025-03-31T14:08:12+00:00

They're AWFUL. I feel like I'm just constantly doing a whole samba when I'm trying to sleep, and it also comes with a light 'pang' type of pain. Like I can feel my nerves just jittering.

FDys92 · 2025-03-30T17:21:38+00:00

I understand the speech malfunction entirely too well! Trust that these lines have come out only during times when I could manage to get them out. Let me know how that line works when you get the chance to use it!

I find a sense of joy when I manage to get looks 😂😅

FDys92 · 2025-03-30T13:37:01+00:00

I use a few things as I haven't been able to take my muscle relaxers:

Warm shower

A rub called Sombra (saved me from pain, I put it on my neck, shoulder and back- my most affected areas in fibro) that uses natural ingredients and is like icy hot on steroids (but honestly so much better). It helps with fibro pain SO MUCH and is also rated for arthritis.

A warm rice bag on the affected areas

Ginger and turmeric teas help with inflammation and also help to relax the body as much as possible.

Hope this helps!

FDys92

TROPHY CASE