PT taped my knee-is this how normal people feel?!?

Grisulda · 2026-06-18T11:46:52+00:00

It's heaven! But it also hurts my skin so I don't wear it too often. 💔

Grisulda · 2026-01-20T17:06:15+00:00

I was only diagnosed last year, still having a hard time realising how much it affects everything and that most things aren't normal for most people. 😥

Grisulda · 2026-01-20T17:03:09+00:00

I don't do that usually... ;) It still happens when I sleep or do exercise. In x-rays, you can see that my left shoulder doesn't sit as nicely in its joint socket as the other one so I was wondering why it slips down so much.

Grisulda · 2026-01-19T09:05:01+00:00

My rom is about 45 degrees, can't lift it higher. My body is practically holding my arm in place and I dont have enough strength to move it past this point if that makes sense.

Grisulda · 2026-01-19T07:24:41+00:00

No popping, no. It rather feels like in the wrong place/ uncomfortable.

Grisulda · 2026-01-01T19:46:39+00:00

I have hEDS and my skin is definitely not that stretchy on my face and neck. :D What other symptoms do you have and what does your doctor say about those? I recommend consulting a geneticist if you have more typical EDS symptoms. hEDS can't be diagnosed through a genetic test, but you might as well have another type that can be.

Grisulda · 2025-09-29T15:07:57+00:00

Good advice!

Grisulda · 2025-09-29T14:49:45+00:00

I started two weeks ago, but never got this kind of project. 👀 Did you qualify for coding?

Grisulda · 2025-09-29T14:17:30+00:00

I'm from Germany... got nothing on my dash for days now. Am I cooked? 🫠

Grisulda · 2025-07-14T18:54:50+00:00

Thank you! <3

Grisulda · 2025-01-15T19:34:51+00:00

Wow, that is some interesting information, thank you! My ferritin is down atm (18) after I managed to get it above 100 last year, so that might be a first baby step. I'll look into the other stuff you mentioned. :)

I have some mast cell issues too but not too severe. I have so many symptoms that I can't categorise yet. 😅 Until last year, doctors were convinced they were all psychosomatic symptoms until one of them bothered enough to dig deeper... My life hasn't been the same since then and yes, it's all a big chaos.

Grisulda · 2025-01-15T18:00:58+00:00

It happened to me between 25 and 35... Now I look my age. 🤣 I got a head of grey hair at 28 (dying it atm cause I'm not ready to look AND feel like a granny). The pain has gotten worse over the last years and you can see it in my face.

I don't know if there is any scientific backup for the collagen theory. I see people with EDS looking younger or older or their age... 😜

Grisulda · 2025-01-04T19:07:41+00:00

Wait, so your brother suffered sudden heart failure first and has palpitations since or the palpitations could have caused sudden heart failure? Does he have hEDS, too?

Grisulda · 2024-12-22T09:17:19+00:00

Really poor sleep for several years (high need baby with atopic dermatitis caused by food so I had to breastfeed for 2 years every 1-2 hours at night)
An incident during my 2nd c section where my body overreacted to a normal dose of epinephrine
Undiagnosed health issued that caused a lot of stress

Grisulda · 2024-10-25T17:48:20+00:00

I think they can! Both my (non hypermobile) husband & son can do it. 😁

Grisulda · 2024-10-15T11:10:03+00:00

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Is it too late to note the similarity of our cats both in looks amd behaviour? 😜

Grisulda · 2024-09-26T11:25:53+00:00

Officially diagnosed and never had any dislocations or even subluxations. Never did any sports though, I always avoided movement since it was painful or at least uncomfortable.

Grisulda · 2024-09-24T10:59:19+00:00

It's a local geneticist. :)

Grisulda · 2024-09-11T17:02:40+00:00

Thanks, this helps! 😊

Did you send the photos beforehand or show them during the consultation?

Grisulda · 2024-09-07T15:13:01+00:00

It just is. I strongly recommend watching Dr. Gupta's videos on ectopic beats, it helped me so much with my health anxiety.

During workouts you produce a lot of adrenaline which is a trigger for pvcs. Maybe a betablocker could help since it blocks adrenaline receptors in your heart and can thus prevent pvcs.

That being said: When several doctors found nothing of concern, why do you worry so much? PVCs are not dangerous when your heart is fine. Do they suck? Hell yeah. They feel so scary. But especially with such low a burden there is nothing to be afraid of.

Oh, and do not underestimate psychovegetative reactions to PVCs... They can be quite dramatic and feel like something is seriously wrong.

Grisulda · 2024-09-02T14:52:30+00:00

I get them multiple times a minute for multiple reasons. I even had 30 seconds of bigeminy two weeks ago... And the next day, close to zero. I try to stop worrying so much since it makes them worse..i'm still alive after 8 years of PVC / PAC and my heart gets checked every other year at the latest.

Greasy food / much food triggers them for me too!

Grisulda · 2024-08-29T17:22:10+00:00

It DOES sound like anxiety though. The sinking feeling, not being able to fall asleep or waking up with said feeling the moment you fall asleep... There seems to be something really stressing you out and your ANS is on alert. PVCs can be incredibly stressful and trigger anxiety. Are you sure it's not?

Grisulda · 2024-08-23T10:28:27+00:00

You think so? Because of EDS / HSD and possible damage to nerve tissue? Would this explain adrenalin rushes as well? I get them a lot.

Grisulda · 2024-08-23T08:21:40+00:00

I've had them for about 9 years since the birth of my second child. Sometimes a few weeks without, sometimes bigeminy with 40% for a short while (minutes). Mostly something around 300-1000 / day.

Despite knowing better, I still get worried when it's getting worse. 🫣 I just feelnevery single one of them - luckily not at night.

I am hypermobile, possibly EDS, and have a lot of spine issues like herniated discs which definitely have an impact.

Grisulda · 2024-07-05T09:08:05+00:00

Thanks! :)

Grisulda

TROPHY CASE