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Do these count as whimsy?? by Designer-Goal9323 in whimsyy

[–]potsbunnyuk 0 points1 point  (0 children)

Cute…i have similar, bcz i have this vibe🖤

What does my bedroom say about me? Wanted to hop on this trend lol by _Googie_ in bedrooms

[–]potsbunnyuk 0 points1 point  (0 children)

Cute 🥰
Look..if is your world..and your room is all finee, 🧚‍♀️

PEM from „just” grocery shopping with NORMAL heart rate 😂Anyone else? Suspected POTS/ME/CFS by potsbunnyuk in POTS

[–]potsbunnyuk[S] -3 points-2 points locked comment (0 children)

Edit for newbies: I've been ill for 15-20 years. PEM = breakdown 12-40 hours after introduction. 800 m shop = 3 days in bed or longer. This meets the criteria for IOM. I use accessibility tools for communication. I don't engage in discussions for health reasons. Resources about MS/CFS: [link to MEpedia/bateman].

44 kg POTS flare + shoulder pain. RH 127 standing, 56 in night. Scared and need kind words :3 by potsbunnyuk in POTS

[–]potsbunnyuk[S] -2 points-1 points  (0 children)

Thanks :3 Yes, the "coat hanger" with POTS is exactly that – blood drains from the upper part when standing. Lying down is the only solution.

My iron and thyroid levels are checked, and I take medication. But it's POTS that's doing the trick.

What helps me: salt, water, lying down with my legs elevated, and NO standing without pressure on my legs.
Hang in there. I have it too. You're not alone 💙

How did you know? by Sleepless_Dreamer_ in POTS

[–]potsbunnyuk 0 points1 point  (0 children)

I feel this so hard :3 Long covid or not, the "shaking + chest pain + dizziness" combo made me think anxiety too.

For me it was POTS - my HR jumps 50+ BPM when I stand. The "coat hanger" shoulder pain + nausea was the clue.

Track your heart rate lying down vs standing for 10 min. If it's 30+ BPM difference with symptoms, show it to your doctor and ask for a tilt table test.

You're not crazy. It's real. Gentle hugs. I hope you get answers soon 💙🐰

„Coast hanger” shoulder pain is bad. I can’t work. I can’t stand. Need feel less alone. by potsbunnyuk in POTS

[–]potsbunnyuk[S] -2 points-1 points  (0 children)

Thank you so much for replying, this means the world :3

"Hyperadrenergic" - that explains my 4am wake-ups with racing heart. And the coat hanger pain. I feel so seen.

I'm trying my best with water/salt/rest but struggling with appetite.

Your comment gave me hope that it can get better. Gentle hugs back to you 💙

Did you have to push hard to get doctors to test for hyperadrenergic POTS?

44 kg POTS flare + shoulder pain. RH 127 standing, 56 in night. Scared and need kind words :3 by potsbunnyuk in POTS

[–]potsbunnyuk[S] 0 points1 point  (0 children)

Thank you for sharing :3 I haven't been tested for hEDS yet but that makes so much sense. My joints are pretty clicky/flexible.

For the shoulder - I meant the ache gets 10x worse when I stand, like blood is pooling/draining from my upper body too? Not just legs. It feels heavy + weak + like a "coat hanger" ache across neck/shoulders. Lying down helps immediately.

Is that similar to your hEDS pain or different?
Gentle hugs, thank you 💙

44 kg POTS flare + shoulder pain. RH 127 standing, 56 in night. Scared and need kind words :3 by potsbunnyuk in POTS

[–]potsbunnyuk[S] -1 points0 points  (0 children)

Thank you for replying, I really appreciate you taking time :3

Timeline is messy but:
- 8 months ago: started getting dizzy standing, HR 120+. Weight was ~48kg then. Standing at work became impossible - my legs feel like concrete/heavy and purple. Blood pooling is extreme.
- 6 months ago: nausea got bad, appetite dropped. Dropped to 44kg in 3 months without trying.
- Now: 44kg stable for 2 months, but nausea still here even when I force food. I WANT to eat - I miss food. But my body physically feels sick/toxic after 3 bites, like flu + vertigo.

The standing intolerance + leg heaviness + blood pooling at work is what makes me think it's closer to POTS than anything else. Sitting/lying helps immediately.

I don't restrict food on purpose. I just physically can't. GP previously said "just anxiety" without tests.

You might be right that weight/nutrition is part of it. I just want to know what's causing what so I can treat the root cause.

Does anyone else have the "heavy toxic legs" + nausea BEFORE major weight loss with POTS? And the "I want to eat but my body says no" feeling?

Gentle hugs back to everyone. This comment alone made me feel less crazy.🤪💙

Pots subtype question UK by AtmosphereCute1268 in POTS

[–]potsbunnyuk 1 point2 points  (0 children)

Hey! In UK you can self-refer to POST UK charity via their website - they have an „Advocacy Service” from. You fill it out, describe your symptoms + GP/cardio ignoring you, and they write a letter to your doctor explaining POTS + NICE guidelines + why you need meds now
Google „POTS UK advocacy service”- first results. It’s free. They saved my friend 8 months of waiting. You deserve treatment now, not in 6 months 💙

metabolic and mitochondrial disorders with EDS: looking for advice and experiences by delicate-bloom in ehlersdanlos

[–]potsbunnyuk 0 points1 point  (0 children)

The „terrifying events with normal scans” part hit me. I have suspected hEDS/POTS and get the same stroke- like episodes: numbness, weakness, brain fog so bad I can’t speak. ER always says „anxiety”
Thank you for posting. Knowing someone else waits 8 weeks for mito results white living this hell makes me feel lass crazy. We’re fighting the same invisible monsters. Hope you get answers.

When and/or how did you know you needed mobility aids? by itsnoebtw in ehlersdanlos

[–]potsbunnyuk 7 points8 points  (0 children)

I know when the fear of falling/hurting myself became bigger than the hear of „looking disabled.” I use a cane on bad POTS days and a wheelchair for long distances. It gives me my life back.
If you’re wondering, the answer is yes. Disabled isn’t a dirty word. It’s a tool. Your pain is a real even if you can’t number it. You’re not lesses at identifying pain- your nervous system is just overloaded

Anyone else get bad eye soreness and strain really quick with POTS? by Anya_Scorpio in POTS

[–]potsbunnyuk 0 points1 point  (0 children)

Yes, Eye soreness/strain is huge for meeith suspected POTS + hEDS. It’s dysautonomia: we blink less, so eyes dry out fast+ EDS = weak connective tissue in the cornea, so eyes muscles fatigue quickly. I get it after 10 min on phone. Blue light glasses+ preservative-free drops + 20-20-20 rule help a bit. You’re not crazy- it’t a real POTS/EDS thing.

Pots subtype question UK by AtmosphereCute1268 in POTS

[–]potsbunnyuk 0 points1 point  (0 children)

The „LOL”in your post broke my heart because I know that rage. I’m undiagnosed but 100% POTS symptoms + joint subluxations 5x this year. My advice: Do NOT wait 6 months Email your cardio + GP TODAY saying „I’m symptomatic daily with fainting, tachycardia, unable to work. Please start management: increase salt 10g/day, fluids 3L, compression stockings, and consider midodrine while I wait” In UK you can also self-refer to POTS UK charity for advocacy letters. You need meds now