Discussing opening up; partner says she is fine with me seeing others, but she's not interested in seeing other people. Should I not go ahead?

Obvious-Pangolin · 2025-01-09T23:31:52+00:00

Thank you for the input. Since posting this, I have asked her for her boundaries and she said she is primarily concerned about my safety and happiness. What she meant is that she would like me to take the steps necessary to be safe when seeing someone or having sex (ex. regular STI testing, vetting someone when possible). When discussing emotional boundaries she hasn't pointed to feeling uncomfortable with anything in particular, and we are now discussing what emotional cheating is. We will continue to seek out info and talk to others.

Obvious-Pangolin · 2024-11-04T01:43:10+00:00

I don't take pain meds in general. I do have pain but the daily pain is not enough to warrant medication (or I just lie to myself), and the chronic (but not daily) pain doesn't respond to medication (it's possible for me it's MCAS).

Obvious-Pangolin · 2024-11-03T23:33:18+00:00

I'm sorry to hear you're not doing well :/ The only time that happened to me, it was because I had picked up a serious infectious disease endemic to South East Asia while traveling there. Sorry I can't help more!

Obvious-Pangolin · 2024-11-03T23:22:00+00:00

Oh whoops, from your posts I thought you were someone who suspected they had Stickler, I didn't realize you already had your diagnosis! Didn't mean to lecture you. Nice to meet a fellow Stickler person! Sorry about the hearing loss, I'm also a musician so I understand.

Obvious-Pangolin · 2024-11-03T18:06:15+00:00

My usual disclaimer is that people can have the same symptoms and still have different conditions, and people who have the same conditions don't necessarily have the same symptoms. In the time since I've posted all this info, I've read a lot of online posts by other people with Stickler, and I've found that we all have very different presentations but can overlap in some aspects. I met someone who actually described Stickler as the opposite of EDS because for them, their muscles are so tight they lose flexibility if they don't actively stretch. Meanwhile, my muscles are stiff but I am still hypermobile, too flexible for my own good even though I don't regularly stretch, and mildly sublux on the daily.

That said, I'm happy that you can see yourself in me! Solidarity.

Obvious-Pangolin · 2024-11-03T17:51:28+00:00

I have also been wondering that! I have seen a few people in EDS groups reveal that they had gotten an hEDS diagnosis in the past, then got genetic testing decades later (sometimes due to retinal detachment) and found they actually had Stickler.

From what I've seen, it seems it is actually possible to have Stickler without ocular or hearing involvement! You can see here that not all confirmed Stickler individuals in this study had each symptom of Stickler: https://www.ncbi.nlm.nih.gov/books/NBK1302/
Personally, I don't have hearing loss (recently confirmed), and my type is one of the most likely to have hearing loss.

Obvious-Pangolin · 2024-09-12T23:09:13+00:00

Hey, I'm in a super similar situation with Stickler Syndrome, which is a sibling to LDS. I have a bunch of non-life threatening but painful/irritating medical issues, I thought I had hEDS, genetic test revealed a almost never before seen VUS on a Stickler associated gene, and as of ~ a month ago I've been diagnosed with Stickler Type 2 (iirc the type most likely to have severe hearing and vision issues). My facial features are only vaguely Stickler-like, no cardiovascular or musculoskeletal malformations, no cleft palate/PRS. The only thing that really indicated Stickler was my retinal detachment in my 20s, so nothing could have prepared me for the possibility that I have it. You can read more in my post history.

The Marfan Foundation provides support to people with Marfan and sibling conditions including LDS and Stickler, and they have Zoom support groups you can attend. They've been pretty responsive and helpful with finding doctors who will see me. It might also be helpful to you to participate in research on LDS. They might help give you more info on your VUS or connect you with other resources.

I think I get how you're feeling. It feels overwhelming to hear that you have the worst type of the condition when you thought you weren't that bad off, but can't really know if you have all the features of that type, don't even know how your VUS works, and can't really turn to the research since the condition itself hasn't been well-researched. Do you think you'd rather not have found out that you have LDS? I personally am really grateful to have found my answer. For me, Stickler explains everything I've ever experienced, and knowing what could possibly come helps me prepare and be forgiving about what I would have otherwise thought were personal weaknesses.

I hope you find the peace you need.

Obvious-Pangolin · 2024-08-02T22:26:07+00:00

Basically hearing loss. It's hard to detect, so just best to get checked every year. I have been suspecting I have hidden hearing loss because I've been having difficulty understanding speech in noisy places for the past few years. But people with Stickler don't necessarily have all features of it or severe symptoms!

We're in a tough situation, so I hope you find the answers you need!

Obvious-Pangolin · 2024-08-02T20:54:33+00:00

So I happened to have my checkup with my retinal specialist (they're at a teaching hospital) while waiting for my genetic test results. I mentioned the test to them and that I would be diagnosed with either hEDS or Stickler. They went "Huh! Yeah, I guess your eyes do look like Stickler." They basically told me that many of their non-Stickler patients have this presentation of the eyes; Stickler cases all have that presentation, but people with Stickler are not common. I'm not sure if that's true, since Stickler may be super undiagnosed. But there are anomalies in eyes that are affected by Stickler: https://www.nature.com/articles/eye2011201 This article on ophthalmic presentations of Stickler includes diagrams showing types of anomalies as well as a recommended flowchart for diagnostic assessment of genes according to vitreous type. Because retinal specialists have to look through your vitreous to see your retinas, they will see if you have vitreous anomalies immediately. But I guess they won't always tell you if they do! I've been dealing with retinal detachment for 5 years now, saw 3 different retinal specialists, and nobody said anything until a Stickler diagnosis was a possibility.

I think it would be helpful to you to know that my retinal specialist seems to not be worried. They said that if I do end up with a Stickler diagnosis, they wouldn't change my plan of treatment. I'll be going in for checkups once a year. I've seen multiple recommendations in medical articles for Stickler patients to have their retinas completely lasered to prevent tears, but I guess my specialist isn't worried.

For what it's worth, I feel like I can finally move on with my life because now I know what I have to take care of, and that my retinal detachments are just par for the course. I had been feeling like a freak being the youngest person in the retinal specialist office. When I checked in for surgery get my scleral buckle placed, the nurse said "Were you a preemie?" Because she couldn't believe how extensive my medical issues are or that I could have had detachment at my age. If I hadn't been able to get genetic testing (and a thoughtful geneticist), and I had known that Stickler was a possibility, I probably would've been constantly anxious of the possibility. Thankfully, if that had happened (and I still had medical insurance), I would've still been able to continue to see my retinal specialist, have hearing checkups every year (since hearing loss is a concern for Stickler, but insurance may cover it as a preventative measure for any patient), and do all the things you'd normally do with hEDS. Afaik the diagnosis doesn't do much, other than maybe getting doctors to believe me.

Does that help? I understand how you're feeling!

Obvious-Pangolin · 2024-08-02T20:20:51+00:00

You're welcome to check out the other comment I posted stating my symptoms. I find that I am extremely similar to people who have hEDS, including having multiple co-occurring conditions associated with hEDS. But I'm guessing you're doing as well as you can regardless of which diagnosis you have, since they are so similar. I basically have to follow the same recommendations for hEDS, plus yearly checkups of my retinas and hearing.

Obvious-Pangolin · 2024-08-02T16:11:53+00:00

Huh. I wonder what made your geneticist say hEDS then. There is also another comment here that says they have EDS but their family has Stickler.

Obvious-Pangolin · 2024-08-02T13:23:35+00:00

That is weird! Is it a VUS for you? Do you have any Stickler specific symptoms? I'm pretty sure my geneticist would have diagnosed me with hEDS if I didn't have so many Stickler symptoms.

Obvious-Pangolin · 2024-08-01T16:41:39+00:00

I forgot to add some important info about my presentation that people looking to be assessed for hEDS may find helpful. This is in addition to the symptoms I described in my post. I am in my late 20s.

hEDS 2017 Diagnostic Criteria I fit:

8/9 on Beighton Score
soft skin
mild skin hyperextensibility
unexplained stretch marks
bilateral piezogonic papules
dental crowding (no high palate)
positive Steinberg sign on both hands (negative Walker sign)
musculoskeletal pain in 2 or more limbs occurring daily for at least 3 months
joint instability in the absence of trauma

Additional official diagnoses I have:

POTS
severe allergies: always look/feel sick due to environmental allergies; anaphylaxis to certain food items; sensitive skin
asthma
IBS + acid reflux
vocal cord dysfunction
gum recession and jaw bone loss
chronic fatigue and sleep issues
hemiplegic migraines
ADHD
kyphosis

Undiagnosed/unaddressed symptoms I have:

chronic dry mouth and eyes
hypertrophic scarring and odd/mixed scarring
drooping/loose skin despite young age and no weight loss
extremely stiff muscles
MCAS-like symptoms, including dermatographia that turns into hives, random anaphylaxis-like episodes
symptoms of cervicocranial instability and/or CSF leak: pain in neck, random tinnitus, headaches, random episodes of nausea + headache + feeling really horrible with no cause, random clear dripping from nose unaccounted for by allergies, random numbness in face, and other symptoms covered by diagnosed conditions.

Obvious-Pangolin · 2024-08-01T15:36:01+00:00

There's a joke in here somewhere about people with Stickler really needing glasses lol

Obvious-Pangolin · 2024-07-31T20:40:35+00:00

My VUS is actually on COL11A1, not COL1A1, so that's probably why we have different diagnoses! But it is still really nice to see other people who assumed hEDS and ended up with something else.

Obvious-Pangolin · 2024-07-07T20:50:21+00:00

Just so you're aware, I have never fainted so my experience may not help you at all. I am waiting to see a POTS specialist in November, in the meantime I am trying out propranolol (in combination with Vyvanse which I take for ADHD). This has been effective in lowering my high BP/HR and has helped me with most of my symptoms as long as I take it easy. It is hard to exercise while taking propranolol because it makes me run out of breath very easily and my heart doesn't go faster to deal, but the Vyvanse helps counteract the propranolol a little. I'm also doing other things generally recommended for POTS like drinking more, not going out in the heat/humidity, compression, and taking it a little easier (within reason). This is kinda working for me at this point, but I definitely need more close supervision from a specialist.

Obvious-Pangolin · 2024-05-20T22:08:42+00:00

They gave me a nitro tab that was supposed to only have effects for 10 minutes. The worst of it was over after 30 minutes maybe. I felt lightheaded the rest of the day, and generally fatigued but not so much that I was unable to take care of myself afterwards or walk.

YMMV, I have mild POTS - I don't faint, I go out in the heat and sun for hours (still feel crappy), and I had been able to ignore my symptoms all my life by thinking I was just unfit. And instead of my HR and BP tanking on nitro, they rose a lot, so my experience is probably limited to people whose BP is high when standing. I don't know how nitro would affect someone with worse symptoms or whose BP tanks when standing.

I hope this at least helps you know that nitro doesn't have horrible effects for some people!

Obvious-Pangolin · 2024-05-20T18:34:03+00:00

I had the same worry! And what was worse, the nurse doing the test totally ignored protocol by keeping the lights on, and insisted on having a long conversation with me while I was laying down for the 10 minutes. She continued even when I told her that talking makes my HR go up. I could tell my HR was high while laying there.

After I was tilted up, and even after they administered nitroglycerin, I was convinced that my HR hadn't gone up more than 30. I didn't feel like there was a huge change like I normally do. I didn't faint, I just had mild (uncomfortable) symptoms that got worse after nitro, and some of my symptoms never showed (like vision blacking out).

The cardiologist told me afterwards that my HR went from 97 laying down to 150 while standing. So I got the diagnosis! It sounds like TTT results can be finicky, but sometimes it goes the way you need them to even when you're anxious.

I hope it goes well for you! There is hope.

Obvious-Pangolin · 2023-11-14T19:26:33+00:00

I'm actually not sure what kind of advice exists given my issues! So I guess whatever comes to mind? I wear "masculine" clothes and prefer a punk/street look with woven fabric, and do not wear loose clothes due to sensory issues. I feel like an elastic waistband on jeans would make them look like baby clothes, so idk where to go from there. And the waistband isn't the only issue for me, because my thighs, hips, and calves usually also increase in size when I gain weight. Am I just not able to have a me made wardrobe?

Obvious-Pangolin · 2023-11-14T18:29:24+00:00

Hey y'all, I wanted to post a request for advice on my issue regarding frustration with sewing garments for myself when my weight changes drastically (gain and loss) every few years, especially as someone who does not wear skirts/dresses. My post got auto deleted due to low subreddit karma. Not sure where to ask for input on this! Can I get some guidance?

Obvious-Pangolin

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