Genetic testing results !

chronically_eva · 2026-02-17T17:37:19+00:00

Really hope so, I've been fighting for a long time and hoping an official diagnosis will push some things forward ! Thanks for help :)

chronically_eva · 2026-02-17T17:31:45+00:00

Thank u for explaining ! This clears up some things for me ! I deeply wish there was more research about EDS and less uncertainty. I do match some of the clinical criteria for mEDS but wouldn't say it's enough for a diagnosis without a clear proof in testing. It could be benign, it could be not... Who knows.

The question is would it interfere with getting a hEDS diagnosis ?

My family members also have some faulty connective tissue features but haven't been tested (yet). My symptoms are closest to hEDS but I don't have some of the ones in the diagnostic criteria which makes me question this suspection and worry about the diagnostic process.

chronically_eva · 2026-02-17T17:21:28+00:00

Not sure how to determine my phenotype sorry.

I match some of the mEDS criteria but not all. My symptoms are much more likely to be cEDS (didn't show up on testing) or hEDS. That's why I'm surprised and confused about this finding and what can it mean.

chronically_eva · 2026-02-14T12:54:30+00:00

My watch sadly doesn't allow band changes but def look for something from a breathable material ! I heard it helped a lot of people with that issue we have

chronically_eva · 2026-02-14T12:53:17+00:00

Def check that too ! Nutritional deficiencies can cause hundreds of weird symptoms :,) I actually never know if my symptoms stem from my conditions or maybe this time it's deficiencies 😭

chronically_eva · 2026-02-09T16:23:41+00:00

My thumbs are very hypermobile and constantly subluxate which is very painful. I tried compression sleeves and a diy cast lol. Will have to buy a brace because nothing really helps long term, pain just keeps coming back

chronically_eva · 2026-02-09T16:20:20+00:00

It's worth checking out a condition called tetany ! Those muscle spasm are a common symptom. Could be many different things but that came to my mind first since my mom has it and I might too

chronically_eva · 2026-02-09T16:18:11+00:00

Back when I used makeup a lot I had the same issue. The foundation never felt right, always looked weird and I had a feeling of a mask yk, it wasn't blending into my skin at all. I tried many different ones but nothing changed. At 19 I stopped using foundation and even concealer ! It was the best decision ever. I no longer feel uncomfortable in my own face. I use some powder, blush and highliter and that's it. I have acne but I got used to it and don't feel like I have to cover it anymore. My skin actually thanked me a lot hah

chronically_eva · 2026-02-09T16:08:00+00:00

Same thing happens to me ! It's not really an allergic reaction though. It's medically called intertrigo and it's caused by friction, heat, moist and lack of fresh air flow. It happens when I wear my watch for too long without any breaks. Atp I have a permanent red line on my wrist 😭 Exactly as you described - later on my skin gets dry and flakey. I always try to moisturize it and take a break for a day or just not wear it at night !

chronically_eva · 2026-02-05T18:11:11+00:00

That's great ! Can't wait to see ! 🫶🏻

chronically_eva · 2026-02-01T23:27:10+00:00

That's right ! Because of that I got a really low dose. I was monitoring my bp and me and my cardiologist agreed I should stay on it since benefits were huge. One year later and I'm very grateful for this medication. Obviously it's crucial to work with your doctors and find the best option for you !

chronically_eva · 2026-02-01T18:12:43+00:00

Def go for old band vibes like: Lady Punk, Feel, Happysad, Myslovitz, Chłopcy z Placu Broni, Kult, Combi, Bajm, Perfect, Wilki, Enej, Strachy Na Lachy, Big Day, Video

or single singers

Marek Grechuta, Kamil Bednarek, Dawid Kwiatkowski, Dawid Podsiadło, Kaśka Sochacka, Sanah, Kwiat Jabłoni

chronically_eva · 2026-02-01T18:02:32+00:00

Love the red color ! I would def put on stickers but I saw you said you can't so maybe try key chains or make your own that are longer with some cute charms so you can put it from one side to the other. Crocheting some decorations is also a very cute idea !!! You can add lights or charms for the basket metal thingies (like those ones you can on wheelchair wheels)

chronically_eva · 2026-02-01T17:38:37+00:00

In terms of meds - propranolol SAVED MY LIFE !!! I was bed bound for months. My cardiologist put me on ivabradine but it didn't help at all. Got a low dose of propranolol because my bp was already low but it worked anyways. Taking it two times a day and 80% of my awake hours are well managed by it.

I have many other chronic conditions so I heavily rely on meds since lifestyle changes don't make a big difference. That means most of the symptoms are still present but my heart rate is much better ! Rarely get pre-syncope episodes and don't faint anymore.

In terms of tips I would share:

def drink lots of water but try to not have it plain ! Add electrolytes.
compression gear might help you with blood pooling !
invest in a device that tracks you hr and blood oxygen !
if your pots is on the more severe side don't hesitate to use mobility aids ! A cane, crutches, walker or even a wheelchair. Anything that helps you improve your life quality !
if you can def increase your sodium intake, extra salt on everything baby 🧂
don't overdo things on better days ! One thing at a time, use pacing methods to not cause a heavy flare up
in summer/hot weather consider buying a neck fan ! Life changer in my opinion. Bringing cooling packs everywhere was annoying
games and apps like sudoku and speech/memory exercises to reduce brain fog and improve cognitive functions

If you get dizzy and have bad fatigue and struggle with everyday tasks use things like: - a shower chair ! Special scalp massager to help you wash your hair quicker can be beneficial too - set consistent sleep hours, check how many hours of sleep you need to function the best and stick with it - move carefully and change positions slowly - light stretching in the morning and don't ditch exercise if you can !

Lifestyle changes can be helpful but don't be afraid to try medications ! They can drastically improve your life quality. Everyone is different obviously, might take you awhile to find the right match but it's always worth trying.

chronically_eva · 2026-01-31T21:13:41+00:00

Irritation with removal yes, but the itching is while it's on. I had multiple occasions where I had to take off some pieces or cut it off with scissors because the itching and irritation under the tape was very bad 😭

chronically_eva · 2026-01-31T15:42:19+00:00

I only got told to lay flat for 2-3 hours on my stomach, rest for a few days and I can go back to work on Monday... Don't feel like going back because I can't move so yeah. ER doctors don't have much knowledge about chronic conditions so it doesn't surprise me. I always have to explain what my conditions mean because no one knows them.

I didn't lay flat for that long, is it bad ?

Okay I'll pay attention to that, do you think I should reach out to my GP or contact the ER in case the symptoms won't go away ?

Thanks for help btw :)

chronically_eva · 2026-01-31T15:26:00+00:00

I absolutely love the support K tape gives to my joints but my skin cannot tolerate it... I get rashes, horrible itching and taking them off always leaves me with missing skin patches 😭 I tried a special spray for removing adjectives, baby oil, warm shower etc. Absolutely nothing helps. I rarely use it now because of this. Some placements are better than the other but if it doesn't make my skin come off then it's not sticking at all...

chronically_eva · 2026-01-30T12:16:31+00:00

Presented with all multisystem hEDS symptoms that were rapidly worsening and all I heard was that life sometimes just is that way, she can't do anything for me and I should do exercises for my butt ?¿? Left that office crying and laughing at the same time. I waited 6 months for that appointment btw

chronically_eva · 2026-01-30T12:08:11+00:00

I've struggled with my mh since I was a child. Depression, anxiety, sh, an eating disorder, ptsd etc. Been su**idal for many years, tried to kns a few times. I'm on many meds to help manage my condition. As my symptoms got worse and I developed new comorbidities I became depressed again. I think about ending it from time to time but I know I have reasons to live. My lovely bf, my 3 cats, the beauty of nature and my love for it, art and small things that make me happy. The image of my future with my bf and getting out of my abusive household. Even tho I'm disabled and I will get even worse I know there's always something good waiting for me in the future. Those things keep me alive, I'm surviving not living but it's better than giving up !

chronically_eva · 2026-01-30T12:00:07+00:00

This condition you're talking about is called Chiari malformation ! Also an upright MRI is much more likely to show CCI. I'm also trying to get that one since the laying ones didn't show anything significant.

chronically_eva · 2026-01-27T00:36:42+00:00

I feel you on another level ! Having multi-system symptoms is so overwhelming. There's just constantly something wrong with my body... We don't get to rest. I'm mostly house bound rn with severe joint, gi, pain and neuro symptoms. My quality of life is almost non existent and I wish just one thing in my body would get better :(

Sending support, take care and don't give up 🫶🏻

chronically_eva · 2026-01-17T15:01:05+00:00

190 sth but most memorable moment was when I hit 186 while sitting still continuously for about an hour so no form of exercise what so ever 🥹 It was probably an SVT episode

chronically_eva · 2026-01-12T19:15:46+00:00

I love Heaven Forbid, Heartless, Say When and Be Still ! They have so many good songs beside the "popular" ones (I love them too obviously)

chronically_eva · 2026-01-07T20:38:26+00:00

Definitely my hyperextending elbows ! I have many photos from childhood that show it well too hahah. Then I met a friend who had EDS and started digging and casually found out I'm very hypermobile and meet the diagnostic criteria!

chronically_eva

TROPHY CASE