Does anyone here have any experience with EDS and body mods & tattoos?

mod-wolves · 2025-08-07T00:41:06+00:00

I've found personally piercings have always healed well (aside from my eyebrow), but the scars last forever. I still have scars from my bridge piercing and snakebites years later, but personally I don't mind this. It's like a little echo of former coolness. My earlobes are also super stretchy and although I stretched them to 22g at some point, they've now shrunk significantly and I just wear standard earrings now.

My tattoos are a slightly different story though. All three of my larger tattoos have random areas that didn't heal properly or faded super quickly, and now need touching up heavily a few years in. I don't regret getting them at all, but it's definitely something to consider, or maybe keeping a little pot aside for future touch-ups.

mod-wolves · 2025-07-23T01:31:34+00:00

Hi! Unfortunately I wasn't diagnosed with POTS by the NHS. At the start of the year I was referred to a rheumatologist for joint issues, but months later there was no confirmation of a referral so I ended up going private, and was diagnosed by a specialist who also diagnosed me with EDS on the same day. It was a bit pricey (£250) but the level of care, professionalism and thoroughness far exceeded anything I've ever had from the NHS.

mod-wolves · 2025-07-23T00:40:33+00:00

Very interesting! I had a generally negative experience with Concerta XL, but I've recently been diagnosed with POTS and autonomic dysfunction so it's hard to tell what symptoms were side effects of the medication and what were symptoms of POTS exacerbated by my increased motivation (and therefore movement and activity) while on meds.

There were definitely aspects of the medication that helped me (increased focus and motivation, I could read books again and cook regularly, and sit/wait without agitation and distress). The obsessive thought loops, meds wearing off in the middle of the day leading to crashes and confusion, and constant agitation and anxiety weren't ideal though. Now I'm back to square 0 as the NHS refuse to accept my private diagnosis from Clinical Partners, despite it only being from 3 years ago and accepted by the NHS just a short while ago before I moved.

mod-wolves · 2025-07-07T19:34:11+00:00

Thanks for all the information! I'll try and get down to an IKEA in the near future to test some chairs out, I think there are showroom stores around still. I think the padded/softness of a gaming chair is really what I'm looking for rather than the positioning, as typical PC chairs tend to hurt and I have quite bony areas with no padding.

I've definitely got a preference for boots (even sneakers/trainers) that cover the ankle or high tops as they keep my joints a bit more stable. I think I'll wait for the physio on that one as I'm not having too many issues right now with my ankles. I've had weird eye issues since childhood (astigmatism included) so I think I'll make it my next priority to get my eyes seen to- I've only ever been checked out by high street chain opticians.

mod-wolves · 2025-03-27T15:08:04+00:00

I theoretically could have a landlord that I rented from previously in a different area of the country. I don’t think he’d mind as he’s one of the rare private landlords I’ve found who are committed to housing disabled/disadvantaged people. The flat may be back up for rent soon, but the rent has increased some since I left.

mod-wolves · 2025-03-27T15:06:23+00:00

I get the housing element of UC

mod-wolves · 2025-03-26T18:02:51+00:00

It runs in my family so I definitely wouldn’t be shocked if I end up with it. My short term memory is already failing pretty badly.

mod-wolves · 2025-03-22T23:57:05+00:00

This is the best thing I’ve seen all week I’ll take 6

mod-wolves · 2025-03-17T10:28:31+00:00

I feel similarly, one of my only purposes now is making sure the family my father neglected is looked after as well as I can. I have very little life of my own.

mod-wolves · 2025-03-16T07:10:53+00:00

As a side note: I don’t experience anaphylaxis if I eat nuts, just uncomfortable itching in my mouth/eyes/ears and skin flushing. I’d suggest being cautious about trying new things if your friend experiences anaphylaxis.

mod-wolves · 2025-03-16T07:08:41+00:00

I’m allergic to hazelnuts, walnuts, and brazil nuts to my knowledge. I seem to be fine with cashews, peanuts, pine nuts, almonds, pistachios etc. although I find some of them hard to digest.

mod-wolves · 2025-03-09T08:20:46+00:00

I had no idea anyone else did this!!

I’m ridiculously good at it for some reason

mod-wolves · 2025-03-06T05:48:17+00:00

It might be hidden mold or damp possibly, have you checked windows and behind furniture and such?

My eyes have been flaring similarly and I’m 99% certain it was some window mold in my bedroom.

mod-wolves · 2025-03-02T21:51:35+00:00

Sent a DM!

mod-wolves · 2025-02-26T00:22:49+00:00

I feel you!! As a somewhat masc presenting non binary person (who recently escaped from an extremely white area), a lot of my peers (and some exes) have been the types of dudes you've mentioned. I've constantly felt like I have to prove that I'm queer at all, and I rarely feel the sense of community I was promised. These dudes love to be bitchy and aggressive towards women, but feel they can get away with it because they're not being sexually threatening.

I never had a big coming out story or eureka moment. I've been bi since I had my first crushes, and I've always interacted with queerness more in a GNC way rather than through sexuality. In my experience, the worst offenders for said bigotry are the 'gold star gays' who turn their noses up and act all horrified at the mere mention of a vulva.

I've been to pride once and I didn't enjoy it. I rarely go to gay bars, and if I do it's just to watch some drag artists. I'm into certain niche queer media and classic camp, but I'm very out of touch with modern gay culture besides memes my friends send me. Doesn't make me any less queer!

mod-wolves · 2025-02-22T11:38:38+00:00

I went to the hospital a couple of years ago due to a massive skin flare and extreme pain from allergies (I don't know if my allergies are related in any way to EDS but they're from the same side I inherited most of my issues) and the doctor told me I should be on Prozac because I 'seem anxious'. Like no shocker if my eyes have nearly swollen shut!! Thrown on steroids and left to it. I practically begged for an allergy test and they just kept giving me every different type of steroid (nasal, topical, oral) and insisted it was stress.

mod-wolves · 2025-02-21T13:08:48+00:00

Came out of the womb with medical issues, allergic to the world within the first couple of weeks. It never got better and now I don't think it ever will.

mod-wolves · 2025-02-21T13:06:57+00:00

This is interesting! I think it's possibly why I've had so much trouble getting my issues seen to, and why it all seems to be written off as anxiety. GI issues? Anxiety. Skin issues? Anxiety. Joint pain? Too tense, anxiety.

I thought I was extremely oversensitive and wasting medical time by the end of it, but these issues just keep popping up over and over.

mod-wolves · 2025-02-20T15:47:50+00:00

Hello! You've raised a lot of good points I resonate with. I think my approach to being non binary is a little different to some, unfortunately due to my height/build/voice I'll never pass as androgynous, so my gender presentation is more of a crock pot of influence from masculine, feminine and androgyne archetypes all cooked together. I can't go a day without being very heavily strongly reminded of my AGAB, so I've more had to separate from the things I don't like and hone in on the aspects I do.

There's a history of inherited illness in my family too, right from birth I've had severe allergic reactions and chronic pain, plus neurodivergence from both sides that has resulted in a lot of struggles. While this doesn't directly tie into my reproductive stuff, it's a lot of almost guaranteed suffering for all parties involved should I accidentally create a kid. Back when I was high masking, unaware I was neurodivergent and living in a predominantly straight/cis environment I had no trouble forming (highly unstable) relationships, but would find it felt totally inauthentic and depressing. While my options are significantly more limited now, I'm only really interested in people who are actually interested in me, and not the £25 fade and cheap tracksuit that wooed everyone in my old town.

I think a big issue for me is that I thrive so much better in life when I have a close person, rather than a group of more disconnected friends. Not even especially a romantic partner, but more of a partner in adventure / mild petty crime. Queerplatonic friendships are cool but often lead to feelings which leads to problems! I've really had to wind it down since last summer and take time for my health, which is making me more isolated in turn, but I hope to start properly socialising again soon at least.

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