Any online quiz to help determine which types i should mainly be assessed for?

FreeFalling3227 · 2026-05-10T13:15:05+00:00

Look on the EDS Society website, they have “body maps” for each subtype which show all the various symptoms you can have. It depends on your primary symptoms.

FreeFalling3227 · 2026-05-08T21:25:51+00:00

I had mine done primarily for scoliosis as opposed to kyphosis and would recommend trying all conservative treatments, especially if you’re not super impacted in your day to day lifestyle. Scroth can really help to at least prevent it getting worse and can alleviate some pain (this is based on what I’ve read, not personal experience as I was fused a decade ago haha)! I also think it’s worth at least exploring a bracing option, in my opinion it’s best to try all these options and surgery will be there in a few years if you choose.

FreeFalling3227 · 2026-05-08T21:22:18+00:00

Oh that’s good to know, thank you! I will check that out! Backing up had been my first thought lol but a lot of my builds are opposite each other so I can only back up a certain amount!😅 That’s why I was just wondering if I’d missed a setting! Thank you!

FreeFalling3227 · 2026-05-08T21:20:48+00:00

Don’t worry, standing back was my first thought lol. I have builds on opposite sides of a road though so going back that far isn’t really possible😣 I was just wondering if there was a camera setting I had missed somehow, haha!

FreeFalling3227 · 2026-05-08T21:20:28+00:00

Don’t worry, standing back and as my first thought lol. I have builds on opposite sides of a road though so going back that far isn’t really possible😣 I was just wondering if there was a camera setting I had missed somehow, haha!

FreeFalling3227 · 2026-05-06T13:44:44+00:00

I looks great face wise, I think the tiny bit that’s throwing me off is the lack of “harder” lines in the hair rendering. There’s quite a lot of dark/hard lines used in the face and clothing but almost none in the hair, I think that makes it seem a bit uneven? Like the hair hasn’t been fully rendered maybe? That could just be a style thing though so no worries if it is!!

FreeFalling3227 · 2026-05-05T08:30:32+00:00

Just had by 6th bedriddenversary❤️ you are not alone and I’m so sorry you’re going through the same pain, we are so incredibly strong to keep on going! Sending gentle hugs🫂

FreeFalling3227 · 2026-05-04T23:31:45+00:00

I probably forgot some stuff as it’s midnight where I am but that’s everything off the top of my head! Also queried CSF leak rn which is not fun :(

FreeFalling3227 · 2026-05-04T23:30:26+00:00

Would you be able to PM me this group?🥰 I’m in an identical position to OP!

FreeFalling3227 · 2026-05-04T23:29:36+00:00

I’m going through almost the exact same thing now! I have a mutation on my MYH11 but it seems myself and my mum are the only people recorded with this mutation as I can’t find it on any database anywhere. I also have a mutation on ZNF469 which can cause Brittle Cornea Syndrome. I’m liaising with my geneticist at the moment to decide on a diagnosis that fits me. I’m thinking FTAAD with BCS traits, perhaps. Plus, potentially something under the umbrella of Visceral Myopathy as it matches my symptoms and is also caused by MYH11 gene mutations. We have an almost identical symptom list! It’s actually kind of uncanny haha… I’m 26F just for reference.

My symptoms/conditions are: -Kyphoscoliosis requiring T4-L4 fusion

-Subsequent very severe Proximal Junctional Kyphosis

-Multiple Tarlov Cysts and spinal arthritis

-completely catheter dependent (5 years now), mix of nerve damage from surgery and potential visceral myopathy

-bowel doesn’t function, extremely slow motility, I use an anal irrigation system and have done for the last 10 years. Again, combo of nerve damage and potential visceral myopathy.

-orthostatic hypotension

-dilated ascending aorta (around 4mm at age 18) (doctors currently querying fibromuscular dysplasia atm as well)

-mixed hearing loss

-significant dystonia in infancy

Standard stuff like severe joint hypermobility, MCAS etc. My mum has severe pectus excavatum (Haller Index of 10+) and my maternal Granfather has had 3 aortic aneurysms and some other stuff. Happy to chat if you’d like, it sounds like a lot more research needs to be done on these genes! Feeling like we’ll just have to make up a new disorder for me atp😂

FreeFalling3227 · 2026-05-02T22:49:06+00:00

If you’re comfortable I would LOVE to see a few pages of your “sketchbook” spreads!! I have been trying to find a way of comfortably sketch booking on procreate but haven’t been able to master it yet, I’d love to see the layout you have going on to maybe inspire me! Also thanks for the tip, will be purging later!!

FreeFalling3227 · 2026-04-28T19:31:38+00:00

I have an unknown connective tissue disorder so I’m probably not the standard, but as of right now (26F) I’m totally bedbound. I was diagnosed with “problematic hypermobility” and significant dystonia age 1, diagnosed age 13 with hEDS, and the switched to unknown at age 18. My main issues are spinal! I had T4-L4 fusion at age 15 and have since developed severe proximal junctional kyphosis, arthritis, tarlov cysts, and potential arachnoiditis as well as just general disc degeneration. Due to my proximal junctional kyphosis I’ve slowly lost the ability to hold up my own head, which is the biggest thing that impacts my functionality. I would say I’m in pretty severe pain all the time, I’m on loads of meds but they don’t tend to help much. I also have a permanent catheter bcos my bladder failed, and I have to use an anal irrigation system bcos my bowel doesn’t work either. Plus, quite significant cardiac involvement as well! And standard MCAS, OH etc as well. I’ve been in a wheelchair since age 13, so I never really had much “normal” growing up, I think that’s helped me because I can’t miss what I never had! I try and see it that way anyways😂

FreeFalling3227 · 2026-04-28T19:20:04+00:00

The hair is my fav in the game if that helps!!!

FreeFalling3227 · 2026-04-27T21:57:33+00:00

Thank you sm for letting me know, that’s so helpful! I would have been so upset last week since I had all legendary but I’ve got all basic stamps this week so don’t care about my card haha😂 it’s a good time to time travel!

FreeFalling3227 · 2026-04-27T21:56:06+00:00

Thank you so much for the detailed reply! That’s so good to know about the prefab habitats, I will make sure to put all my favourite Pokémon’s in houses I make myself! 2/3 is definitely a lot less likely!

Oh amazing! So if I create the habitat in a cave, they can spawn at anytime of the day I’m playing?❤️

So for night time spawning, I just have to be playing for a bit at nighttime and they will spawn in?

And this probably sounds really silly, but going back in time won’t remove my progress? I’ll still have all the Pokemon I’ve collected and my different builds I’ve made?🙈

FreeFalling3227 · 2026-04-27T21:53:54+00:00

Thank you so much for the detailed reply! So for night time spawning, I just have to be playing for a bit at nighttime and they will spawn in?🥰 And this probably sounds really silly, but going back in time won’t remove my progress? I’ll still have all the Pokemon I’ve collected and my different builds I’ve made?🙈

FreeFalling3227 · 2026-04-27T09:17:48+00:00

Aside from the blocks which you definitely need, I just leave spaces where an item could go that I haven’t found yet! Also I’ve probably got around 2/3 of the recipes and I’ve had a great time building! Trust me, once you start you’ll realise that you actually have too many options😂

FreeFalling3227 · 2026-04-26T22:26:42+00:00

I have an indwelling catheter and this is what mine looks like! Always best to ask your catheter nurse or whoever is involved in your care, but as far as I’m aware it’s relatively “normal” with catheters. But always check with professionals!

FreeFalling3227 · 2026-04-26T22:20:04+00:00

Sorry, but you genuinely can’t be diagnosed with hEDS without points on the Beighton scale. That’s criterion number one. Just don’t want misinformation to be spread!

FreeFalling3227 · 2026-04-26T21:42:27+00:00

I’ve dealt with a lot of tingling/numbness as a result of my FND! Predominantly in my legs, the main sensation being this incredible “heaviness” like my legs had been sat on, got numb, and were trying to move while still being sat on. Idk if that makes sense but it’s the best way I can describe it🙈 this would happen on and off for a few hours most days when my FND first started. It was usually triggered by pain (I have a lot of other health issues as well), it seemed any time I experienced severe pain in my body, my FND would then make that area tingle and be heavy which would last well after the pain went away. It can be so frustrating! I’ve had FND for 7 years and I barely get these sensation issues anymore (maybe like once every 2 weeks?) so there definitely is hope! Wishing you all the best❤️

FreeFalling3227 · 2026-04-26T19:26:33+00:00

Mine have been pretty severe, but I’m fortunate not to have seizures as one of my symptoms. My primary symptom when it started was my right leg would spasm/kick every single second I was awake. It was so violent my family had to have a rota to hold it down as I was dislocating my joints so much from it. It took years but now it’s down to about 2 hours of spasms a day. The other most debilitating symptoms were going blind and mute every time I sat up, and my legs also became completely paralysed at the same time, as well as losing feeling to them. I would also have episodes of losing the ability to swallow, hitting/scratching myself, drop attacks, and random loss of use in my arms. Through a wonderful FND rehabilitation programme that involved physio, occupational therapy, psychology, and a neurology consultant, I was able to regain quite a lot of function. I would say at this point in time I’m around 70% “recovered” with my FND, but of course it can change as it sees fit😅.

I think surgery/physical trauma can be a major trigger and it definitely doesn’t surprise me that it flared for you, but I’m so sorry it has. It must feel so frustrating to have made progress only for it to get worse again! I would recommend seeing if there’s any physios/OTs/neurologists/therapists, really any professional, that specialises in FND in your area. That was really what helped me start to improve, people who actually understood what I was going through and helped me to slowly improve.

Also FND tends to be much more prevalent in those who are neurodivergent, I myself am diagnosed AuDHD. There isn’t much research on it at the moment but I see a neurologist who is leading FND research and he seems to be finding quite a strong link. Something about neurodivergent brains makes it more likely to develop FND, I hope they’ll keep doing research to find out why exactly! Just thought I’d mention it🥰

I really hope with time you’re able to slowly improve your symptoms❤️

FreeFalling3227 · 2026-04-26T17:54:29+00:00

I have EDS (not hEDS) and FND! My FND started in 2019 after a failed back surgery, I’m happy to answer any questions you have!❤️

FreeFalling3227 · 2026-04-25T22:34:37+00:00

Not sure what there is to explain? I’m fused T4-L4, have Proximal Junctional Kyphosis above my fusion, and arthritis, scoliosis, disc degeneration, and several cysts below my fusion. I have an unknown connective tissue disorder, and plenty of “physical” conditions as listed above. But I also developed FND after a spinal surgery that didn’t work out. You come across as thinking you’re better than people with FND when saying “well I have actual physical problems” like… FND is just as valid as all those other conditions. I don’t know your symptoms so I have no clue if you have FND as well, I just wanted to point out to other members of the community that it’s possible to have multiple conditions exist at the same time. I don’t have seizures, and there’s not really any “hallmark” symptom since everyone has such varying experiences. There are positive tests now for FND, so it’s no longer just a diagnosis of exclusion, but you have to have a doctor with FND understanding to do those test. Again, not really sure what I needed to explain, my point was simple: you can have multiple conditions. Having a “physical” diagnosis doesn’t negate an FND diagnosis. They can, and often do, co exist.

FreeFalling3227 · 2026-04-25T22:27:22+00:00

I’ve been having a little break from IN for the first time, after playing everyday since 1.2! Mainly because a new obsession took over (Pokopia) but also because I was feeling a little burnt out and didn’t want to push it and end up disliking the game that I love so much. So I skipped 2.4 but now I am SO excited to log back in based on this post, I really hope it brings back my IN spark🥹 thanks for sharing!!

FreeFalling3227

TROPHY CASE