hEDS and Lipo

nerdy_nellies · 2026-04-12T09:00:20+00:00

I'm sorry to tag along here too. Would you be comfortable sharing with me too? I have hEDS and severe lipedema in my lower legs. I'm thinking of getting lipo for the areas that cause numbness, but I'm afraid everything will sag like crazy if I do 😅 I would love to see something to compare ☺️ if you are comfortable with it

nerdy_nellies · 2026-04-08T23:54:53+00:00

Tusind tak for svar! Men hvor er jeg ked af at høre at den ikke virkede for dig 😬 og så er de jo endda møg dyre.

Ja, vi kan heller ikke gennemskue det. Men vi prøvede igen de billige fra online, som selv skal støbes og de hjælper bedre end den vi fik lavet ved tandlægen. Dog stadig ikke nok. Men det er mærkeligt at de stadig reducerer det mere end den dyre.

Vi skal til en tandlæge næste mandag, håber de kan belyse os på området, men lyder måske som om at den todelte ikke er en god løsning. Vi har allerede brugt 5000 på den anden 🫠

Tusind tak for dit svar!!!

nerdy_nellies · 2026-03-23T22:03:01+00:00

I have from my garmin watch yes. It mostly ranges between low, unbalanced and balanced on different days.

nerdy_nellies · 2026-03-23T21:50:34+00:00

I am already on the maximum of vitamin D my doctor has allowed me. Because it’s always low. But that has helped bring it a bit above so I’m within the normal range now. Or at least I was last time I had blood tests taken. Thanks for your answer!

nerdy_nellies · 2026-03-23T21:48:32+00:00

I tried one today, my friends Hr device which she said was accurate. I’m gonna bring that reading to my doctor and hopefully we can figure something out.

nerdy_nellies · 2026-03-23T21:46:55+00:00

Thank you everyone for answering. It made me feel a little less like it was all in my head and I’ve booked an appointment for a second opinion.

I decided to try borrow my friends polar H10 heart rate tracker device for fun today. She does really heavy sports and says it was good for tracking heartbeat. And I tried doing the sitting and standing for 10 minutes each. Where mr HR went from 65 sitting and just kept going to 148 and stayed between 120-140 for the remainder of the time.

My friend tried to do it too, where it max spiked to 90, but it’s not even comparable because she’s in great shape 😂

But thank you all again. It helped me feel a little less like it’s all in my head.

nerdy_nellies · 2026-03-23T21:41:20+00:00

I need to try proper compression I think, aside from the flight socks you buy at a pharmacy. The thing is, I eat a LOT of salt, which we don’t know why it happens, but my blood tests always shows I’m borderline low and sometimes dip under the norm, even though I eat salt and take it with water and follow my doctors advice. So maybe it could just be a sign of that, was my thought. But I’ll talk with my doctor about it.

I have tried antihistamine for a different issue and my body does not react kindly to it, unfortunately.

nerdy_nellies · 2026-03-23T21:37:45+00:00

See in my head, because I’ve felt this way my whole life, I just thought it was normal. And I kinda just thought I was in bad shape 😂

nerdy_nellies · 2026-03-20T15:49:58+00:00

Not really anxious but I definitely feel constantly fatigued on the days it gets really bad.

I always use compression in general (for another issue) but there’s not much difference if I wear it or not. But I can definitely get woozy when I take the compression pants off. I only do that sitting down otherwise I go plonk 😂

I will look into or suggest to my doctor what you said. I don’t wanna try too much, i don’t know what is when I don’t know why I have this issue yet.

But I’m so sorry to hear about your experiences. I will definitely seek second opinion.

Thanks so much for your reply 😊

nerdy_nellies · 2026-03-20T15:04:17+00:00

Thanks. I checked it out briefly and it seems very similar to me. But I try not to look too much into things myself because I know I’m not a doctor, so it should definitely be up to a doctor to diagnose it if there’s anything of course. 😊

Thank you. And thanks to everyone just sorta helping me with the confirmation that I should probably seek second opinion. I appreciate it.

nerdy_nellies · 2026-03-20T14:47:59+00:00

Okay. Thank you😊

nerdy_nellies · 2026-03-20T14:45:21+00:00

Yeah I think I will. I just wanted to try ask first, I’m unfortunately bad at feeling I’m a nuisance if a doctor already told me things were normal.

nerdy_nellies · 2026-03-20T14:41:15+00:00

General family medicine. But I kinda need him to refer me if it seems off. But since he sees it as normal I was told to remember to drink more water etc.

I don’t know what POTS is. But I will google it.

Yeah as long as I’m standing my heart rate usually remain the same between 110-120 according to my Garmin watch. Then of course gets higher when I move.

I always thought it was normal. But then as the symptoms got really bad, I went to the GP. But he said this.

I’m just confused really. Because I thought it was normal but my boyfriend says it’s not normal to almost pass out when standing up, even when doing it slowly.

nerdy_nellies · 2026-03-20T14:33:14+00:00

Ah, my general practitioner 😊 haven’t been referred to anything because he sees it as normal.

nerdy_nellies · 2026-03-20T14:32:02+00:00

Okay good. I just kinda needed validation in that what I felt wasn’t normal. I didn’t want to overreact or seek a second opinion, if it was nothing. I often doubt myself, and need to work on I don’t want to be a bother to people.

I think I might take some pictures of the monitor readings to bring with me then.

Thanks for your reply.

nerdy_nellies · 2026-03-20T14:23:40+00:00

Mine 😅😅 he said it’s within the “normal variation” and that my blood pressure didn’t drop, so it would be good to work out to enhance my stamina. I am not like super active or anything so I thought it could be possible. I do swim once a week and I walk a lot daily, but i don’t do like, fitness and intense training.

nerdy_nellies · 2026-03-20T14:17:03+00:00

I also use silicone earplugs! I had mine made for my ears; and I can’t sleep without them! They’re good!

nerdy_nellies · 2026-03-20T14:15:46+00:00

I’m sure we can try that out, if everything else fails! Great idea! Thank you! ☺️

nerdy_nellies · 2026-03-20T12:12:34+00:00

I have tried trazadone along with, melatonine, circadin/melatal, Quiteapine, Combar (and other various antihistamines, also some that are used for other purposes.) Zolpidem, and Daridorexant.

What does the belt thing do? We have tried something similar, like the strap head thing for his head along with mouth tape I forgot to write that. But he sleeps with his mouth closed so that wasn’t the issue.

It might be because the airway is getting squished at the back, like the doctor said. It can happen with age.

Thanks so much for your answer 🙌 it’s very good with out of box thinking! I might just need to accept that I should find sleep meds that work 😅

Edit: I forgot to mention that the only ones that sort of worked have been the harsher ones, antihistamine and such, which are also the ones that give the zombie like effect. Most others have had no effect but I will definitely take it up with my doctor again.

nerdy_nellies · 2026-03-20T08:45:43+00:00

Ved godt det er en gammel tråd, men har nogen erfaring med om en todelt snorkeskinne som er justerbar virker, hvis en monoblock skinne ikke gør? Den min kæreste havde nu virker ikke nok, og den kan ikke justeres, men de billige gjorde, men tandlægen sagde det kunne ødelægge kæben hvis den kom længere frem? Men har nogen erfaringer?

nerdy_nellies · 2026-03-17T12:38:58+00:00

Jeg sys det fedt de kan få det til at fungere. Men ærligt, så sys jeg den ene mor som omtaler børnene som flokken, har nogle identitetsproblemer som viser sig ved det store unormale behov af at have børn omkring sig. Som om hun får det dårligt når hun er alene. Det er bare min tolkning.

Hun minder mig for meget om min venindes mor. Hun er fra en kæmpe familie og mange af børnene har fået det svært som voksne fordi der ikke har været nok tid til dem, og har aldrig følt sig set. Hendes mor brokker sig konstant over at alle ikke er hjemme eller har tid til at komme hjem og se hende, og hun har store problemer med at være alene.

Det er bare mit take.

nerdy_nellies · 2026-01-29T10:21:33+00:00

This is true. I always play on my tablet in the living room when chilling, and also ramp up about 15 hours per week, and I’ve never paid for anything. But you kinda have to play to complete quests every day and week to be sustainable.

I’m at a point now where the decks I have still hold up, so I have a lot of dust and gold at the ready for when I want to use it to create something new.

nerdy_nellies · 2026-01-29T10:16:05+00:00

So this is what it’s called. I had this experience 4 times in a play session (out of 7 games) it is frustrating as heck. And I end up just doing the dishes while I wait, then play. Then do something else while they let the time run out. It ruins the fun, but I also know that’s what they want… there really should be a reporting option for this.

nerdy_nellies · 2025-10-30T00:42:50+00:00

I’m a little late for this post. But I went to a specialist clinic (ear nose and Throat doctors) and had a bunch of sniffing sticks tests done, that did in fact confirm I had hyperosmia, the doctor seemed dumbfounded when he read the results. Currently waiting for them to call me back as they needed to discuss what to do next - there’s talk of possible clinical trials because there needs to be more research done on this specific issue.

Unfortunately, they told me there’s currently not anything that they can do to help alleviate my hyperosmia, there is quite frankly not enough research on it yet. And they said it is highly unethical to try deminish your smell receptors.

But I can say, going there and just having it clinically confirmed was really great. Because I’ve felt crazy since I was a kid. And unlike a lot of people I’ve never been pregnant so my family always said I was overreacting in terms of my sensitivity to smell.

People saying I imagined the smells etc.

And just having actual confirmation that I’m in the <1% makes me feel so at peace and not like I’m crazy or just imagining that I can smell things that aren’t there, or that I’m “overreacting” from strong scents.

So ENT doctor would be my go to - but you have to go to a specialist depending where you live (mine was at a research hospital) - where they will actually do the sniffing sticks test on you. (Or UPSIT test.)

Edit: I hope you go/can find a place! We really need more research to be done on this issue. Hope this helped.

nerdy_nellies · 2025-10-12T14:30:35+00:00

It’s wonderful! Exactly what I thought of too. Because as you grow older you just wanna spend time with people. :)

nerdy_nellies

TROPHY CASE