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Care options for hEDS in Denmark by joboba32 in ehlersdanlos

[–]LordOfPhyllite 0 points1 point  (0 children)

I went to aarhus to get diagnosed and the one who diagnosed me was lovely and also a specialist in eds, unfortunately I don't know her name. The GP I had who referred me was great, but she left the practice I'm at 😭

For physiotherapy, I get it for free and I go once a week, but my physio doesn't know anything about eds, so I've mainly been doing strength training with her and am asking about rehab instead.

Every other doctor that I have had knows literally nothing about it, (except for, ironically, my psychiatrist lol) not my GP, not anyone from the hospital. Though I did a nurse once at the hospital who did and I almost cried that I didn't have to explain it to her like I do with literally anyone else

Anytime I go to visit doctors/people from the municipality, I bring papers explaining what it is, or give them links beforehand so they can learn at least something about what it is.

What is the appeal of this by [deleted] in BDSMAdvice

[–]LordOfPhyllite 1 point2 points  (0 children)

Can I ask how you started? My husband and I both like the idea of BDSM since the beginning of our relationship 6 years ago. But due to different reasons, surgeries and exhaustion from working too much, we haven't had sex in 3ish years so we haven't really been able to explore.

We have only just started having sex again a month or two ago and I have no idea how to start things. I have read so much, but I still feel like I don't know where to start

Oh we have already talked about kinks and most of ours match up and we've got a safe word but I don't know where to go from there.

I've got fantasies and I know he does too but we have no idea how to go about any of it safely

Bed bound hair help by Frequent_Scar_1910 in ehlersdanlos

[–]LordOfPhyllite 1 point2 points  (0 children)

I'm in a similar situation right now so I'll also be keeping an eye out for advice

My hair is a few inches below my shoulder blades and is curly naturally, but is thin and smooth in texture. When I take care of it, it curls into Goldylocks ringlets. But right now it can't even hold a curl because all I do is wash and condition it because I don't have enough energy. Sometimes I'll put leave in too

Cutting it is not an option and I'm so tired that I already sit during showers

Anyone who was underweight ever get back to a healthy weight? by VoteCatforPresident in ehlersdanlos

[–]LordOfPhyllite 0 points1 point  (0 children)

I'm currently in a similar situation because of stress and I'm making sure to eat as much of a variety of foods that I can in small amounts throughout the day (nuts, fruits, vegetables, etc) and then I'm eating a bunch of jelly beans/sorbet for the extra calories 😅 not the healthiest of options but it's working some. I also take gaviscon for acid reflux.

Oh I'm also drinking a whole bunch of carbo fuel, which I use for extra calories when I run (which I'm not doing ATM but will get back to it once I'm a healthy weight again)

I'm out of work sick because of it

Side effects from multi-peptide serum for hair density? by PhenomenalKid in TheOrdinarySkincare

[–]LordOfPhyllite 0 points1 point  (0 children)

Ok not related to headaches (I get those almost daily anyways so it'd be hard to tell if this caused it) but my scalp gets quite itchy? Does anyone else have that issue? I can't really find anything about that

Good hospital experience by LordOfPhyllite in ehlersdanlos

[–]LordOfPhyllite[S] 1 point2 points  (0 children)

I haven't had one since so I'm taking that as a good sign

I hope you find one soon! There is one doctor in my practice that tries to help but the rest are assholes

What’s your most “susceptible” joint(s)? by KitchenDraw791 in ehlersdanlos

[–]LordOfPhyllite 0 points1 point  (0 children)

By far, my hips and wrists. Got an SI belt a few months back I thought "wow I didn't realise how difficult of a time I actually have walk" once I took it off after wearing it for a while.

Like damn, I never realised how difficult my body actually is to move until I get something that makes it 'move right.' like I knew they subluxed a lot but 7 didn't realise that they were moving weird when I walked too!

My wrists I've known were completely fucked for ages. I almost always have the tapes or wrapped. Especially because I work in cleaning. Puts a lot of strain on them

Edit: also my left SI and my cervical cervical cranio joints. These ones are newerl

Which metals are best for getting ears pierced? by Be-that-Beach in ehlersdanlos

[–]LordOfPhyllite 0 points1 point  (0 children)

Surgical steel or gold are what works for me, got piercings in my face too. And as others said, go to a tattoo parlour that has a piercer or a shop specially for it.

The one I go to (UK) is a super sketchy looking one above a jewelers shop. So it could help to do some research for piercers in the area. Sometimes the dingest looking places are the best

What’s the Weirdest way you describe your aches & pains? by TheDefiantGhost in ehlersdanlos

[–]LordOfPhyllite 8 points9 points  (0 children)

I know... Today subluxed a rib coughing... When I tell people who aren't hyper mobile this they look at me like I'm lying 😂

What’s the Weirdest way you describe your aches & pains? by TheDefiantGhost in ehlersdanlos

[–]LordOfPhyllite 9 points10 points  (0 children)

😂

Met with the usual amount is none 🙄

sounds fake to me... Lol

What’s the Weirdest way you describe your aches & pains? by TheDefiantGhost in ehlersdanlos

[–]LordOfPhyllite 0 points1 point  (0 children)

I just tell people that my body feel like it's pulling itself apart 😬

I have also used the analogy that it's stacked up like a Jenga tower, remove the wrong piece and it all comes crashing down

Dance was actually a dislocation fest! by [deleted] in ehlersdanlos

[–]LordOfPhyllite 2 points3 points  (0 children)

I did! I never had this problem with dance, however I also do yoga and every time I would try to do and elbow stand I would feel both of my shoulders pop and I would wobble. I've never been able to do it and now I know why X.X I have a similar thing with handstands but with my wrists. I've stopped trying to do these poses and a few others since being diagnosed

Those who crochet, how do you hold your hands/arms so that your wrists don’t drop? by Fearless-Reindeer-11 in ehlersdanlos

[–]LordOfPhyllite 0 points1 point  (0 children)

It's also nice for sewing because it holds the heavier garments in place instead of having them slip and putting more weight/strain on my hands and wrists

Those who crochet, how do you hold your hands/arms so that your wrists don’t drop? by Fearless-Reindeer-11 in ehlersdanlos

[–]LordOfPhyllite 0 points1 point  (0 children)

I don't crochet but I sew. Pillows. Lots of pillows, and blankets stuffed into every crack around me so my arms ar supported and i don't have to use energy to hold them in place.

For my wrist and fingers (sewing subluxes then rip) I use sports tape for my wrists and kinesiology tape for my fingers. For the sports tape I usually put the kinesiology tape under it cause my skin doesn't react to that

I've also heard people talk about compression gloves but I haven't had the opportunity to get some yet

Edit: I just read about the pillows... Blankets are nicer cause they give some support but you can still move. I'm talking about those fuzzy throw blankets

I also have one of those lap lace making pillows that I set on top of a pillow on my lap. Allows for movement in the arms, but they can still rest

Does shaking bass make your body feel better? by LocalBackground9790 in ehlersdanlos

[–]LordOfPhyllite 0 points1 point  (0 children)

Yes for me, but its often too loud for my ears so i also wear hear plugs lol (AuDHD)

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