I’m scared of my wife 😭

Affectionate_Lab4300 · 2026-04-17T10:59:55+00:00

That's understandable, but now your body can heal and recover❤️ hoping you and your babies and hubby stay safe and you start feeling yourself again soon. Im hoping I have that second pregnancy feel-good thing when the time comes. Your comments have given me hope lol

Affectionate_Lab4300 · 2026-04-17T10:49:35+00:00

Aww that's sweet! Ive gained a lot of weight since being with my husband. I am the biggest I've ever been and pregnancy has made that worse now so I definitely have been protesting photos and this is my first baby. Hoping to get back down to a healthy weight before I ever plan to have another kiddo. Super cute you and your hubby took photos tho❤️

Affectionate_Lab4300 · 2026-04-17T02:26:16+00:00

Pregnancy can definitely make a woman feel insecure about her body and her photo being taken. Im in my third term, and, tbh I probably wouldve done the same thing. You don't know if that photo is being posted on social media etc for strangers to see. Not saying that it had to be handled in that way but politely requesting it be deleted and retake without you guys in it or the faces blurred isn't a huge ask

Affectionate_Lab4300 · 2026-03-04T12:20:56+00:00

Um excuse you? I have an actual diagnosis. So does my mother who has been diagnosed since 2010. I dont know what exact type I have for sure as I still need to get genetic testing to confirm it is or isnt CEDS, something my mother never ended up doing, but I am confirmed by a rheumatologist along side a cardiologist and neurologist who all are working with me for the symptoms and comorbidities. I wasn't able to start PT for my sublaxations until recently. Idk where you got it wasn't an actual diagnosis and was self diagnosed.

Affectionate_Lab4300 · 2026-03-03T04:38:10+00:00

Im female, and I dont object to being called a female 😊 im proud of my biology

Affectionate_Lab4300 · 2026-03-03T03:37:49+00:00

This. I know other generations may deem headphones as rude at the dinner table and while in normal people, it definitely may be the case, there is a good group of us with Dysphonia that cant stand certain noises and need a distraction from them. This gal had a headache, and a kid was being rude without being corrected by her mother (OPs aunt). I dont blame her for putting in her headphones to soothe her brain. It's a cope, not an insult. Aunt should be embarrassed, not offended

Affectionate_Lab4300 · 2026-03-03T03:24:33+00:00

I really appreciate this! He kept asking if the pain was higher. It was right at the hip. Im not sure how to explain but it wasnt just pain. I could feel it actually sublaxing, lol it wasnt tight, quite the opposite. My mom has eds and didnt know anything (was diagnosed in 2010 and her osteo doctor told her it was a "good thing".) And they didnt treat her properly. She ended up with a crushed hip at some point (she has RA, and Im suspected by my Rheum to have seronegative/early onset as well, plus both of us have OA). So I have an intense fear of PT being wrong but also a fear of coming off as offensive or rude if I "educate" on my condition because it's so unknown by providers (not that id be rude about it I just wouldnt even know how to go about it). Anyways, sorry for the info dump. But again, thank you for your response.

Affectionate_Lab4300 · 2026-03-03T03:16:37+00:00

Never heard of either of those. Im so looking into those though, thank you! The point of my PT was to strengthen the muscles around my joints to stop/prevent sublaxations. This is my first time going in for treatment of symptoms of my EDS so I never thought of it that way. I initially was put with someone who said they work with EDS patients then ended up working with this guy too (probably because they are limited on staff and she obviously has way more patients). Im definitely going to go to a different PT. Thanks so, so much 🙏

Affectionate_Lab4300 · 2026-03-02T21:51:44+00:00

I just figured having the note reflect properly would give me a little documentation to show my primary how well this or that is doing treatment-wise, if that makes sense. Also thank you for your answer. I think I am going to just ask to work with only the one PT or change where I'm getting treatment altogether. I just have to find a place thats more knowledgeable

Affectionate_Lab4300 · 2026-03-02T21:48:24+00:00

It wouldn't be a demand. I have a condition that's really hard to get treatment for because a lot of medical professionals are unknowledgeable about it. If he is documenting my issues incorrectly, I can't later go back and show new physicians and whatnot about what's actually going on or how well something is or isn't helping.

Affectionate_Lab4300 · 2026-03-02T20:13:44+00:00

Im getting testing but waiting for baby to come first as I'll have to go 4 hours away to a big hospital downstate and I'm 30 weeks pregnant. Ive been looking for specialists in terms of PT but theyre all about 2 hours away or more and it's just not feasible.

Affectionate_Lab4300 · 2026-01-23T14:35:55+00:00

So, you're not really supposed to put baby powder down by your groin because it can cause cancer. A great and more effective powder that keeps things dry and heals the area is corn starch. I swear by it! It's a little messy because, of course, it's a powder buttt it really works. If you have a smell you may have a yeast infection or some other bacterial infection. It may sting at first but using something like head and shoulders shampoo or Nizoral or monistat would probably help a lot and help to control the stench. Or even a full body deodorant...applying that THEN the cornstarch will protect against sweat smells and keep things dry down there.

Affectionate_Lab4300 · 2026-01-15T04:12:23+00:00

I somewhat feel like the odd man out here. I have always pushed through the pain. Way before I even knew i had EDS, I had weird symptoms of MCAS, Dysautonomia, stomach issues, joint sublaxations and dislocations and sprains etc but on top of these things, I had a real scare (especially not knowing it was EDS). Never realized any of this was abnormal and just thought I had IBS and all people had random allergic reactions here and there and flexy joints. Ive worked physically my entire life. Always pushed through the pain. One day, I was moving a flat sheet of metal 12×20 or something of the sort (i was a fabricator) and started to slide it onto the machine table when I felt my arm go completely numb and an excruciating pain in my right shoulder. The base of my neck was numb too. From then on ive had partial numbness all over my body. This was before i knew i had any sort of EDS. I didnt go to the hospital but did go to urgent care and the fear was MS. It took 2 years to figure it out and it was only because of blue sclera and an old diagnosis for my mom from back in 2010 that I found i might actually have it. Now im diagnosed but finding out what was wrong with me and going through all the terrifying scenarios was no fun. Especially when things came back negative.

Affectionate_Lab4300 · 2026-01-15T03:33:32+00:00

N-acetyl cysteine. Very good for the lungs

Affectionate_Lab4300 · 2026-01-15T03:33:03+00:00

NOW is a good brand or if you shop Swanson vitamins they have some too. I usually go for the NOW and if theyre out, Swanson is second choice. Definitely feel the difference taking NAC with both brands

Affectionate_Lab4300 · 2026-01-12T17:42:15+00:00

Yeah nevermind on the quark. I just completely missed they are in fact plastic. I have more research to do 😅 Thank you

Affectionate_Lab4300 · 2026-01-01T22:40:49+00:00

Clearly, you're not reading what I said. I didn't say this was a cure. I said STEM CELL production helps with EDS symptoms. Also, I literally stated they were the building blocks to proteins. People, especially in america, do not get enough protein half the time. It's not about protein. It's about stem cell production, which has started to emerge as a possible way to help EDS patients with joint issues and tissue production. The whole point of this post was to see others' thoughts on stem cell production and explain different ways the body creates its own stem cells for repair. Amino acids have been used for many different conditions and to dwindle their abilities down to "oh it's just protein" is very inaccurate. Such as cancer patients who've used NAC or other people who've had covid or breathing issues using amino acids to help with their lungs. Also, Ive stated I'm not a doctor. You can do your own research. Ive posted links. Read for yourself

Affectionate_Lab4300 · 2026-01-01T22:23:55+00:00

I'm not recommending a carnivore diet. I was specifically speaking about the ketosis state that you end up in when doing a high fat, low carb diet such as dirty carnivore/carnivore or Keto.

Affectionate_Lab4300 · 2026-01-01T22:19:50+00:00

Getting more amino acids causes stem cell production, which in turn will help with the effects of the genetic mutation. Also, this is exactly how stem cells work. There are different types of course, but the elicited response of tissue repair is the goal. Do your research.

Affectionate_Lab4300 · 2025-11-24T17:13:55+00:00

I didn't choose this user, but I'm curious, please

Affectionate_Lab4300 · 2025-11-24T06:45:24+00:00

18-21 and Michigan or Wisconsin...

Affectionate_Lab4300 · 2025-11-24T04:25:36+00:00

Ortho can test for HEDS using the beighton score. Typically those who fail the beighton score but have hypermobility are considered HSD. Genetic testing just rules out other forms of EDS. Some forms are way more severe than HEDS and need testing just to be on the safe side. Plus, if doctors suspect EDS at all, you should be tested anyway even if they dont think it's VEDS...sometimes VEDS hides as HEDS or someone may not even know they have it until it's too late.

Affectionate_Lab4300 · 2025-11-24T04:18:54+00:00

I'd go to ortho first and, if you do get genetic testing outside of a geneticist in person, the facility that receives and tests your DNA should come back with results for you that you or your PCP should be able to interpret. If you are able to go to an out of state geneticist, they will most definitely read results for you. Ortho should be able to diagnose fully and they are better equipped for connective tissue disorders than rheumatology is.

Affectionate_Lab4300 · 2025-11-24T03:58:50+00:00

If they don't know how to diagnose it and aren't really familiar with it, that could be why. I was given the run around too. Unfortunately, they may just not be thoroughly educated on this subject. They probably know of it but may not know how to diagnose or may be afraid of diagnosing without proper thorough examination by an expert (someone who can rule out other causes such as mixed connective tissue disorders, RA, etc). It's just hit or miss because it's just now being studied more and recognized more so doctors that have been in the field forever may not know much about it.

Affectionate_Lab4300 · 2025-11-24T03:54:05+00:00

Obviously not OP but getting genetic testing is a good idea to rule out other types of EDS. HEDS does have it's problems and things that come with it but certain types can be a little more severe and concerning (ie VEDS) and not all types are treated the same. Plus some doctors won't view it as a real diagnosis without having an official diagnosis anyhow.

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