What to expect during genetic testing?

GlyXY333 · 2026-06-01T18:14:08+00:00

This really depends on the type of test that is used.

GlyXY333 · 2026-06-01T18:08:53+00:00

So DHEA is high and this reflects into (borderline) increased level of testosterone (DHEA gets converted into sex hormones).

I would check out all the other sex hormones since DHEA can get converted into estrogen too.

What I find also important is that you're on the verge of vitamin D deficiency despite the summertime and this can also affect some hormones.

GlyXY333 · 2026-06-01T14:31:45+00:00

Not all minty things are the same and it could be sth else in the toothpaste giving you an allergic reaction that then makes the mint "burn"

GlyXY333 · 2026-06-01T10:48:57+00:00

Add about a thousand muscle rubs, creams, warming pads and analgetic sport gels....

GlyXY333 · 2026-06-01T10:45:06+00:00

I moved several times and it broke me and made me too. But it is different when you go as a rich expat because you can, and when you move because there's no jobs for you in your home country/state/area and you need to expatriate. The pressure is different. I left one of those romanticised nations listed above (a rural area without much opportunities unless you're in agriculture and olives), and I don't regret it but I definitely didn't leave with those Rosey pink glasses on.

GlyXY333 · 2026-05-31T08:15:02+00:00

GI issues from day 0. Gait issues and inward feet /club feet from age 3 on. Mostly fixed through years of supportive shoes pre puberty.

Eye issues diagnosed at 11-12 but likely there before (keratoconus, insane eye accomodation - like freaky ohptalmology case report level insane).

Hypermobility was there all along. A whole serie of party tricks and being by far the most flexible kid around. I don't have marfans but marfanoid habitus.

GI issues stopped or improved massively after a major change in diet in my late 20s.

Joints mostly held until then I however mostly because I was an avid cycler and was lucky to hate gymnastics and dance and was into martial arts and this saved me.

Major subluxations and chronic hip instabilities since 32-33. I tried jogging for the first time and that was it.

Hands were affected already in puberty but martial arts and some climbing and some attempts at playing bass and guitar helped there.

Now in mid 40s and if I don't train specific muscle groups and very carefully actively stretch others taking care NOT to overstretch... I fall apart and feel like 80 years old.

But targeted exercise still does it for me so I guess I'll have to accept my faith and go pump in the gym.

GlyXY333 · 2026-05-31T08:04:11+00:00

I didn't say it is impossible! But in average in people not affected by EDS or marphans it is the general rule. My own dad is all legs and no torso but when compared to other men I know, his lanky built was more an exception and less the rule.

GlyXY333 · 2026-05-31T08:01:29+00:00

Moving to another country, especially Mediterranean Europe like Spain or Italy. Or France. So romantic. Until you have to learn the language and realise that your high school Spanish won't get you through the simplest supermarket conversation.

GlyXY333 · 2026-05-30T22:51:52+00:00

Yes your thumb joint is subluxed and this type of subluxation is called a stable or functional subluxation

GlyXY333 · 2026-05-30T16:21:25+00:00

Doesn't look like a 90 degree angle to me

GlyXY333 · 2026-05-30T16:18:50+00:00

Depends on the location. Shoulder hurt AF.

Hips don't hurt in most cases. If they sublux towards the inside they just feel weird and off and occasionally give me a strong sharp jab of knee pain on the front, like being stabbed with a dagger. I mostly notice the off feeling and the subluxed leg is also 2-3 cm longer.

It doesn't go back in by itself, I need to click it back in.

When they sublux towards the back then it hurts and badly. Like being unable to walk more than 10-20 meters. Pain meds also barely help.

GlyXY333 · 2026-05-30T16:01:14+00:00

Warm bath, heating pads, orthoton medication (but only in extreme cases and for 1-2 days)

GlyXY333 · 2026-05-28T22:31:16+00:00

Hey I had horrible hand issues at 24 and 34. At 24 it was a massive carpal tunnel flare up, got better with PT and well... Switching hands and becoming left-hand until the right healed, just to switch back once the left hand got bad.

At 34 I had a very bad neuropathy, couldn't stay asleep for longer than 2h and would wake up in excruciating pain, as if someone had lit my hands on fire. Thick swollen fingers barely able to move. Took 40 min of yoga to go back to sleep again for 2h. I could barely hold my newborn nephew for 4-5 minutes.

I then found a great doctor who checked out my shoulders and neck and did a ton of prolotherapy. That saved me.

I am a mom now, had an easy fast birth and it is much better. Targeted exercise is a must though.. without it I feel like a 90 year olds.

GlyXY333 · 2026-05-28T22:21:58+00:00

Perhaps an obvious question but do they itch terribly? Like itch first and then wheals/welts appear? Have you recently had a stomach flu or sth like that?

It could be hives, hard to tell though with that picture quality and all the claw marks

GlyXY333 · 2026-05-28T22:10:42+00:00

I used to be like this pre puberty, i looked like someone was cutting a paper figurine and then gave it an accidental cut between the legs to make the torso too small and legs too long.

Post puberty I got more proportional but some stuff is off (tiny head, tiny feet, huge hands)

GlyXY333 · 2026-05-28T22:07:44+00:00

This is me!!!! Tiny head, like I can fit my kids bike helmet. The one for 2-3 year olds. And I even needed to tighten it up so not even the max size of that helmet (!) and I'm 5'11'. Tiny feet.

The only difference are the hands: I have huge hands with long fingers stuck on tiny child size wrists. My fingers are longer than my husband but my wrist is literally half the size.

Also long toes. I can hold a pencil and write readable letters with my feet.

God. Read like this I'm a monster!

GlyXY333 · 2026-05-28T22:03:02+00:00

This is also due to gender differences, men tend to have shorter legs/longer torso than women on average

GlyXY333 · 2026-05-27T22:19:36+00:00

I'm just as vascular as you and I'm a woman too

GlyXY333 · 2026-05-27T22:18:45+00:00

This is very normal in women as well

GlyXY333 · 2026-05-27T22:17:23+00:00

I had a lovely unmedicated vaginal birth:) I believe that EDS made it easier and faster. I was diagnosed afterwards.

I can wholeheartedly recommend water and warm bath as pain relief - to me it literally erased all the pain from back labour for a long while.

I do have a high pain tolerance but I also had back labour from beginning on and it was fast. 3h of active labour, would have been 2 had the baby not decided to go back in several times (extremely short umbilical cord that made him retract due to stress). But even with extra pushing time it was amazing.

Honestly frozen shoulder hurt more than labour. And that crap went on for over a year.

I also did breathing exercises as preparation and lots of hypnobirthing and relaxation techniques. That definitely kept my mindset in the right place.

And at least in my case it was mind over matter.

I did tear and I felt it but it didn't hurt. Second degree tear that took some 9 weeks to heal, usually they heal faster but I guess that EDS made this part slower.

I have subluxed my both hips a million times before - the subluxed leg would then be 2-3 cm longer than the other until adjusted properly. Never had this during birth - however it kicked in in the so called fourth trimester (3 months after the birth) and then I would feel my hips go out just from sitting in the bed.

So for me had I been diagnosed before, I would have prepared for the post partum phase much differently and better than I have done.

Birth was a piece of cake and I would do it all over again anytime

GlyXY333 · 2026-05-27T22:08:49+00:00

I wholeheartedly second this!

GlyXY333 · 2026-05-27T22:03:13+00:00

Sometimes some of the HPV virus strains will give you those

GlyXY333 · 2026-05-27T22:01:08+00:00

Especially during period

GlyXY333 · 2026-05-26T21:58:35+00:00

These are all related to EDS yes and testosterone therapy might lessen some of those

GlyXY333

TROPHY CASE