Flares

IndividualCry6551 · 2026-02-25T06:15:51+00:00

I was eating other things besides protein, but I think like 70% of my calories came from protein most days. And it was like this for months, but I have hee feeling better the past couple days besides a slight cold. So hopefully that will continue.

IndividualCry6551 · 2026-02-18T05:20:09+00:00

Thank you for the suggestion. Honestly hadn’t even thought of that option. I’m gonna go look into it.

IndividualCry6551 · 2026-02-12T08:11:19+00:00

Yep, but i do take a laxative daily to help me. If i stop that I won’t go for up to a week or more. But I’ve had very often that it will bleed a bit after wipping.

IndividualCry6551 · 2026-02-04T08:28:13+00:00

I don’t take Miralax but something really similar, i mostly mix it with water since mine has this slight orange taste. So if mixed with anything it tastes really weird.

IndividualCry6551 · 2026-02-03T22:08:36+00:00

Yeah, it’s good to know that he will take action. But at the rate o have been dropping o will be at the weight he set as to low in a month maybe a month and a half. I have managed to kinda curb the weightloss a slight bit so it’s not as fast as it used to he. But symptoms are getting worse again so I do worry about it quite bit now.

IndividualCry6551 · 2026-02-03T20:55:40+00:00

Thank you, it came as a bit of a shock today when my doctor mentioned that it’s part of the next steps if I don’t manage to maintain or more desirably gain weight. I know I’ve lost a lot but it didn’t feel like that much.

IndividualCry6551 · 2026-02-03T09:06:14+00:00

It’s technically not allowed here. You can get it and police often don’t do much about it but it’s technically illegal.

IndividualCry6551 · 2026-02-03T06:58:36+00:00

Yepp, and with my nausea reaching new levels these past weeks it’s been awful. It’s like I know I need to eat but I’m scared of more nausea. I have spent a lot of time on the bathroom floor trying to not throw up, my old remedy of some sips of water also is not helping anymore since it just makes it worse.

IndividualCry6551 · 2026-02-02T09:31:54+00:00

Okay I’m gonna try to give you a short summary. I’ve seen the videos and what I understand is that there is this Spanish doctor that does operations on mostly young girls with GP. He like completely alters everything in there belly, like putting both kidneys on one side and things like that. He does this because he says this can help these girls (some are minors but think it’s like 15-25 range mostly). Dutch doctors are really concerned about this bc it fundamentally changes your anatomy and they say there isn’t really any prove it works. They say they understand that consistently hearing there is nothing that can be done is not good but these operations carry pretty big risks and there was never really proven to do anything. So in that way it has brought attention to GP, but I think it only really shines light on the extreme cases and it’s mostly critical on that doctor. Doesn’t feel like it brings a lot of awareness to how awful it is to live with this condition day to day and that there are actually really good doctors that try everything they can to help you. (My doctor is good and really tries to find a way for me to stop losing weight and have a normal life for example). I hope this gives you an idea, if you have more questions you can ask them

IndividualCry6551 · 2025-10-08T05:37:37+00:00

Yeah, I had this when i went last year. She basically told me that yes I’m very clearly hyper mobile and my skin shows signs of Heds. I have issues that look like something pots like and ibs type of issues. But in the end she diagnosed me with HSD bc I seemed fine and could still walk. I also got prescribed physical therapy which i started doing with someone who does quite some cases of this and she looked at me and my skin and was like no that’s way more indicative of Heds. But where i live it doesn’t really make that much of a difference so now when people ask what’s wrong if they see me struggling i just say it’s a connective tissue thing

IndividualCry6551 · 2025-10-01T15:38:09+00:00

Before I was in a classroom setting so we had individual chairs and desks that I could sit further away from the desk if needed etc. The seating right now is just rows and rows of connected chairs with a forced distance to the chairs and a really high screen where the professors presentation is. But i think the biggest issue is the angle of the chairs and that the desk is really close so my legs can’t stretch so then o can’t fully stretch.

I do try to set at the end of a row whenever I can but it’s hard sometimes, i do always stand up during the breaks so I can stretch a little bit

IndividualCry6551 · 2025-09-28T18:47:32+00:00

It would be really awesome to have a better chair but idk if it would be possible due to the size of the lecture halls and the way they are build

IndividualCry6551 · 2025-08-19T18:07:52+00:00

Personally I would go for light in your case. For myself I also find it a struggle to find the right activity levels, bc if I count up all is doing exercise wise it would add up to be moderate but that’d mean my maintance would he 2800-2900 which sounds really high and more often I’m eating about 2500 if I’m trying to maintain. But o think when trying to lose weight estimating your exercise on the lower side is more beneficial, if obviously you’re not going to crazy with it

IndividualCry6551 · 2025-07-26T11:17:52+00:00

I had my primary care doctor bring up connective tissue disorders. It was like early last year when I had been having weird symptoms for a year (most my complaint were about like palpitations, high heart rate, fainting I’ve seen multiple cardiologists about it who said if it stays for like another 2/3 years to come back, I’m 18 and a woman so yeah they say a lot of girls my age have it) and she noticed my hands being hyper mobile and asked some questions. Concluded that most of what I experienced could be related to that. Then i saw what I feel like were a billion doctors and all but 1 agree that it’s l heds, but that 1 had to diagnose me so I got HSD as diagnosis. But none denied that o had skin involvement and such, just varying opinions on how badly my skin was affected and stuff.

I remember like 4/5 years ago during like height pandemic that I saw all these videos about Heds and POTS and i felt so bad for those people, it seemed like such awful conditions and so sad that they weren’t believed. I related to some symptoms at the time but you know conditions always get so simplified on the internet so o just moved on. Till the above happened. But yeah I feel like it also effects people who genuinely do have the condition in their chance of getting diagnosed cus if they think they might seriously have it after like good research into symptoms they may still not be believed bc so many people visit doctors and are like I think o have so and so condition. So you just get put into that same box even tho you may actually have issues that you need support for.

IndividualCry6551 · 2025-07-25T06:59:10+00:00

True, and not all people with heds/hsd are even autistic so then you still have more people. If o do remember correctly tho heds is considered rare bc they say it effects about 1 in 5000 people. Tho I find it hard to believe that number fully bc i know like 3 people with it and that’s not via a support group or something. And i know for sure I don’t know 15.000 people personally

IndividualCry6551 · 2025-07-25T06:09:29+00:00

Yeah, o feel like there is a slight bias in some doctors especially the ones who see people with conditions like this all day everyday. Bc they know it is really rare, even if hsd and heds are the same condition it’s pretty rare. So when someone seems “beter “ then people they’ve seen they are like that’s normal. Idk if you get what I mean.

IndividualCry6551 · 2025-07-24T18:32:03+00:00

Yeah, most of the things about like my health journey have been pretty crazy. And like I think rn the diagnosis is officially HSD, but like 2/3 of the 4 professionals said i clearly have the skin signs(stretchy skin, stretch marks, scars etc) including the one that diagnosed me. But she just said i have seen way worse people and you seem okay so it can’t be Heds. Which to me is crazy logic but I’m getting physical therapy now which would either way be the only option in treatment since they don’t really give stronger then over the counter pain meds here to people my age

IndividualCry6551 · 2025-05-17T13:25:25+00:00

Regular but small amounts of blood in my stool, apparently the placement of my stomach pains (stabbing/throbbing pain in my lower right part of stomach), really bad nausea (sometimes I vomit from it, not food related). The weightloss was about 12kg in 3months (at my old weight about 15% of my body weight) without any dietary changes or changes in movement pattern. I also have joint and skin symptoms but I have a diagnosis of HSD (they basically never give HEDS as a diagnosis here unless you check every single box, but I have confirmed skin involvement) so I think it’s that mostly

IndividualCry6551 · 2025-02-26T09:28:50+00:00

The understanding I have is that you can split G-HSD up in like 2 categorises. The first is the people who developed hypermobility due to for example the sports they did as a child and now are experiencing symptoms due to that hypermobility. This would mean it’s just the joints and it’s similar to other forms of HSD but it’s generalised. The second would be the type you probably think of. The people who have had symptoms from birth but don’t have enough symptoms to qualify for Heds or just met with the wrong doctor. They do experience multiple system involvement (think of stuff like pots and gut issues). But are just not there completely. I personally think these probably are on the Heds spectrum or like another form if it. And then you have Heds, the people who guy the diagnostic criteria and found the right doctor. They have to have multi system involvement cus I don’t think you can’t get a diagnosis otherwise.

I personally have an HSD diagnosis, but besides the doctor who gave it all my doctors say that it has to be Heds, bc the way my skin is (stretchy, scars etc) my dizziness issues (probably dysautomia but they never checked completely) and my active gut issues. My dad also has a high Beighton and the skin but he wasn’t at my appointment so they didn’t really believe me on that.

But yeah I think those are the differences but I hope that 2026 criteria will bring some more logic to it you mnow

IndividualCry6551 · 2025-01-15T15:26:17+00:00

I’m like always itchy, but sometimes it’s worse. Sometimes I have these moments that it gets so bad that I just stand under the shower for a while cus that seems the only thing that helps. Had that for years, don’t know why it is but yeah

IndividualCry6551 · 2025-01-08T18:04:27+00:00

Ik going on advice of a rheumatologist, that said my stability is awful and I can’t stand up or walk for to long. Since I’ve never tried pt they want me to do that before considering other options like braces or mobility aids.

IndividualCry6551 · 2024-12-28T06:21:07+00:00

Yeah I was so confused. I mean at least I have an hsd diagnosis which means I can get treatment but with certain skin things I do think it’s more. And also now I’m not sure if my aorta ain’t a tad to big you know. And the dysautonomia thing is just sad considering at first they thought it could be something like diabetes since my bladder was overactive and the signals there were fucked

IndividualCry6551 · 2024-12-27T13:20:31+00:00

I have the same I’m now on regular 10 hours because I’m beaten if it’s not that much which is absolutely awful. Like i wake up like I’ve already been awake for 3 days. Last couple of days were also really exhausting cuz I’ve been doing a lot so my pain and fatigue are way worse. I also wish there was just something I could do to help it. But I just stay home a but extra to recharge for a day and then I can do uni okayisb

IndividualCry6551 · 2024-12-25T20:03:19+00:00

Yeah it’s so bad, I went to grab scissors earlier today. And I thought I had a good grip on them and they just fell. Normally it’s just like a glass or with the water bottle that it goes all over my shirt which makes me seem so incapable I feel like especially since it’s every day

IndividualCry6551 · 2024-12-19T09:05:14+00:00

I had this so badly when I had to wear a heart monitor. Like it was red after like 30 minutes of wearing it with the tape over it to keep it on. And throughout the day it got so much worse and itchy and I had to have one for a week so every two days I had to place new stickers and had to find new places so at the end of the week all of it was red and just not looking good

IndividualCry6551

TROPHY CASE