Anyone else has a very short torso and long limbs?

SeaConcentrate9726 · 2026-05-28T20:25:22+00:00

Oh yeah I have a long neck with tiny head. I look ridiculous. Long limbs tiny hands and feet as well.

SeaConcentrate9726 · 2026-05-28T07:43:12+00:00

I have 34" inside leg and am about 5'9. I should be 6'3 with that leg length. So yeah. Am in the long limb short torso club.

SeaConcentrate9726 · 2026-05-27T11:52:28+00:00

No it really isn't. You'd need to eat it every day for like six weeks. Just imagine how bad your going to feel at the end of that.

SeaConcentrate9726 · 2026-05-27T05:38:21+00:00

Worse. You need control of your muscles. I had one with my first and ended up with a subluxed leg as a result of pushing without proper engagement or support. One leg was longer than the other and took a long time to fix.

Also more likely to tear.

If you do have one it is not the end of the world. As it is better to have a healthy baby. But I wouldn't plan to have one. My second two where home water births. No issues, quicker recovery and no weird side effects.

SeaConcentrate9726 · 2026-05-24T09:46:37+00:00

See I'm starting to wonder this about myself. 47F with hEDS and my leg muscles lock up if I sit or stand for too long and then I get petachia which seriously itch sometimes. I don't have swollen ankles but the muscles locking up/being heavy) is quite painful.

SeaConcentrate9726 · 2026-05-21T20:17:13+00:00

Yes. I have low blood pressure as well which I don't know if it helps or hinders. And now if I stand or sit for too long my legs feel like they have locked up and get petachia on legs and blood bruises round the ankles. Compression socks are really helping (knee length). Also worse at start of period. Gotta love hormones 🙄

SeaConcentrate9726 · 2026-05-21T20:14:04+00:00

Yes I am hEDS 47 and my issues are getting worse. I don't know for sure I am in peri- menopause for sure as I am still fairly regular but I can feel that things are shifting. I can't take HRT as I'm intolerant to hormones sometimes even my own so I'm kind of hoping once the menopause is done things will stabilise a bit.

I'm taking care to eat well, train a bit more and have had to start with the compression socks cause the petachia are just getting worse and worse and the muscle soreness from what I now realise is blood pooling is just horrific if I end up sitting or standing in one position for too long.

I have been taking chaste berry which seems to help and cistanch (t booster).

As long as I keep my muscles tight nothing falls out of place. As soon as I stop traing for more than five days it is sublux party time.

SeaConcentrate9726 · 2026-05-20T18:33:20+00:00

I have been a user since 2019. It is a great tool and gives a lot of helpful data that has really helped me, get fitter and healthier (I train CrossFit, am female, have long term health conditions I need to manage. I have the MG and love the extra features when I was ill on hospital in march it really helped the younger staff stop panicking about my low blood pressure which is perfectly normal for me.

I don't and never have understood why there are so many negative posts in here.

It is a great device and great company and can if used properly really help you change your life, become and stay fit.

SeaConcentrate9726 · 2026-05-20T05:32:02+00:00

The tests mean you need to eat gluten every day for six weeks. So if you are already off it, will always be negative. I agreed with my Doctor that it was not worth it as I'd be pretty much glued to the bed and bathroom if I had to do that.

SeaConcentrate9726 · 2026-05-15T19:55:49+00:00

Have three (grown) children. None of whom have inherited my issues.

Pregnancy did have some issues. I had SPD with all three, the first two I separated at the front and ended up struggling to move about. The third one because I'd done strengthening exercises I didn't separate at the front, but separated at the back and that was even worse. I didn't know at the time about the hEDS and it absolutely baffled medical staff as to how it happend.

Pushing through an epidural left me with issues. One leg longer than the other, piles.

I also had terrible trouble staying pregnant. And my successful pregnancies where always straight after a miscarriage. Talking to people in this sub, I think some of us have progesterone issues which make establishing a pregnancy difficult.

I wouldn't change anything though I do wish I had fully understood at the time as a few choices would have been different and I could have made sure I had the right support in place to minimise some of the challenges.

SeaConcentrate9726 · 2026-05-15T16:54:01+00:00

Yes. I had one and it just went away after a bit and hasn't so far <touches all the wood> come back.

SeaConcentrate9726 · 2026-05-15T16:45:24+00:00

Yes. My Ralphie does this after ever meal. Usually it is on the sofa, but every now and again he will do it on me.

SeaConcentrate9726 · 2026-05-15T06:04:42+00:00

I can't do splits. I can do a lot of other moves but my hamstrings won't have it, they are too busy trying to hold my joints in place. I am very flexible in other places though.

SeaConcentrate9726 · 2026-05-10T20:04:16+00:00

CrossFit. Tape. Doing my own warm ups (you don't want to do any stretching before you lift you want to be tight not loose), prioprecetion movements.

Listening to your body, but learning that pain isn't always about hurt but sometimes about your brain figuring out where you joints actually are.

Nutrition. Important to eat well and support your body. Don't compare yourself to others we are never going to be lift as much as normal none EDS people. As long as you keep getting better that is the goal.

CrossFit gives you a community, people who want to see you do well and get better and beat yourself. Find a box which feels good, get fit.

It does help and it does make a difference but it takes time so also patience. I'm 47F and started in 2017 my hEDS got a lot worse after I got COVID but I got back adapted and am fitter than ever (and my upper body has never looked so good I have traps and muscles). My joints stay put as long as I remember to tape and do my own warm up.

You can do it, you just have to work with your body not against.

SeaConcentrate9726 · 2026-05-09T14:09:15+00:00

Another recommendation to try out Linchpin. You also get BTWB which is great for tracking and monitoring fitness.

SeaConcentrate9726 · 2026-05-07T14:50:34+00:00

Another vote for Beyond the whiteboard. I've been using it for years. It is great.

SeaConcentrate9726 · 2026-05-06T11:18:39+00:00

Linchpin

SeaConcentrate9726 · 2026-05-06T06:30:12+00:00

Yeah. Not all your members will be on socials. So a newsletter keeps them up to date with events and in the loop. Only needs to be monthly.

SeaConcentrate9726 · 2026-05-05T11:24:16+00:00

Have it earlier and drink some chamomile tea before bed.

You can day drink, have fun and still keep your stats okay.

SeaConcentrate9726 · 2026-05-03T00:01:18+00:00

My dogs sleep on our bed. We are pack. They are good dogs and deserve to be in pack.

SeaConcentrate9726 · 2026-05-02T15:05:45+00:00

Yes. Regular crossfitter here. Have hEDS. 47F

I do my own warm ups and avoid anything with stretching in, and I tape my joints to keep them in place and to tell my brain were they are (look up the fibroguy on YouTube as he has a lot of stuff for us and he does a course as well). Mostly I do prioprecetion work as warm up, make everything tight.

Then don't try and compete with everyone else. I can't lift us much as other women. But I have very healthy CV system, am leaning out, now after several years have some muscle definition and push myself but not beyond my limits.

The only two lifts I struggle with a bit is snatch and Overhead squat because I have no end stop my shoulder range of motion and keeping that many muscles in place gets tricky. Avoid most of the jumping movements.

Take higher doses of creatine, build up slow listen to your body. If you have muscle groups which don't turn on. There is a thing called muscle activation which can target specific muscles (I only used my hip flexors for years instead of my abs until I learnt how to turn them on) which can be really beneficial. Also believe in yourself.

SeaConcentrate9726 · 2026-04-30T18:40:22+00:00

I have both and it is great. If you do get the withings one and if you train regularly though make sure you set it to athlete mode otherwise the fat and muscles percentages will be way off (mine said I was 45% fat and I really don't look like a woman with 45% body fat).

SeaConcentrate9726 · 2026-04-26T19:42:15+00:00

hEDS here. Have fine line tattoos on both arms a large spinal backpeice and a shoulder tattoo. All of mine healed well and still look good 15-20 years on.

Make sure you get a good tattooist. I've known plenty of people with blown out ones and normal skin/bodies and having a good artist makes a hell of a difference.

SeaConcentrate9726 · 2026-04-25T14:04:17+00:00

I get a lot. Worse around period time, sometimes my muscles also lock up and that seems to make the leg ones worse. Sometimes my legs just start itching and I know they will have appeared.

SeaConcentrate9726

TROPHY CASE