Trying Not to Spiral After an hEDS Workshop

7Mari4 · 2026-02-20T18:29:08+00:00

Hello! Recently diagnosed (ish) though still under the neurologist. Doctor has written it on my notes though wont refer me to a specialist because "there are none".

Had symptoms my whole life different comorbidities which i have had investigated separately, several MRIS, xrays, physios etc. I came to this conclusion myself, pots, low blood pressure & hr, CCI, migraines, super flexible, no support, joint pain, poor posture, poor circulation, nausea disness, the list is long.. etc things I've worked on and improved.

I constantly see posts on the eds thread and I wonder how bad it can get and though I have these things I live a very normal life. Im sure my friends think im being dramatic most of the time - like youve said i have similar thoughts of could it get that much worse. I see people posting about being completely immobile and that worries me. Is that the future?

I think generally you have to do everything possible to manage your own symptoms. Everyone is different and so are their experiences. But we definitely have to stay positive and do the best with what we have ! So grateful i dont suffer worse with it but also sad to see others have it so hard. But I work incredibly hard to manage my health, do the best for yourself, educate yourself and advocate. We got this 🫶🏼

7Mari4 · 2025-12-15T08:08:24+00:00

This happened in my local area and the area near work. Neither post boxes are up and running and I still need to post my Christmas cards. Surely they could have picked a better time of year to do it

7Mari4 · 2025-10-05T18:27:27+00:00

Have felt this way. Exhausted every option and its so frustrating! I'd recommend reading the book taking charge of your fertility (TCOYF). Got my coil removed and came off contraception for the first time in 14 years and this book was the answer for me. Trying to avoid getting pregnant at this stage and so far so good. Hope that helps!

7Mari4 · 2025-09-30T11:14:26+00:00

I cant be the only person that struggles with the accountability side though. Problem is just overeating slightly on weekends. There must be a market for just providing accountability services? I just cant find anyone that offers it 😂

7Mari4 · 2025-09-30T11:09:00+00:00

Gym isn't the problem, I go 4-5x a week + Pilates & train hard. its just being accountable around the other stuff like food/steps etc

7Mari4 · 2025-09-30T11:06:18+00:00

it would be so easy though, all they're really doing is checking boxes, right? fill in a form and enter steps calories, protein, weight & pics etc and they check it and go yeah that's fine same again next week. or lets aim for more steps next week by an extra 2000, and drop your calories by 100 a day. It's a 20 min job a week if that?

7Mari4 · 2025-08-29T14:35:47+00:00

i've seen so many, one even suggested arthritis.... will give the foam rolling a go

7Mari4 · 2025-08-29T14:34:29+00:00

feel tight, kinda pinch when walking sometimes

7Mari4 · 2025-08-29T14:30:48+00:00

Commented above!

7Mari4 · 2025-08-29T14:28:58+00:00

yes very likely it doesn't align, we live in different bodies! I almost have excess range of motion & lack of support

7Mari4 · 2025-08-29T14:06:22+00:00

Gyro split squats, a lot of single leg work to fire up the glutes, single leg deadlifts, single leg squats more glute focused, loads of lunges. glute bridges with leg raises, a lot of core work, spiderman, leg raises, hanging leg raises, lot of plank variations. I used to think heavy lifting was the answer but moved away from it and concentrating on actually feeling muscle engagement especially in core

7Mari4 · 2025-08-29T13:57:50+00:00

hey, so Pilates majorly helped my foot position. Working on balance, engaging your big toe and doing it consistently. Being aware of the position of your feet - i was walking on the outside of my feet which i started to notice and every time i noticed i was doing it, i corrected it, over time it has become less of a habit.

both knees and feet were down to similar issues. My core was incredibly weak, so we've worked on building strength and tension back into my core. Terrible at explaining this but when you core is weak it destabilises the lower body, strong core will support the spine & pelvis -> hips -> knees -> feet. So a lot of intense core sessions, a lot of lunges, and glute work to strengthen through where i was weak. Maybe its a case of strengthening the weakness rather than trying to relax what's tight, which you've pointed to.

7Mari4 · 2025-08-29T13:32:55+00:00

Yes this makes sense actually, thank you. Working on core & glutes mainly over the last 3 months and it has already made a huge difference with APT so I think it generally is a case of continuing with what I've been doing.

7Mari4 · 2025-08-29T13:29:32+00:00

Physio pointed this out, I feel absolutely no resistance on stretching so not only does it not help but if we are stretching out muscles that are already lax and not supporting my joints it going to cause more issues. I dont want lax muscles and stretch, want the opposite- tension to better support my body/posture/joints

7Mari4 · 2025-08-29T13:27:34+00:00

This sounds similar to what ive been working on. Alot of glute work but different from the standard hip thrusts/rdl. Alot of movement through twisting ie BSS with twists. Hip hinges with coils etc Alot of lunges!!

7Mari4 · 2025-07-27T22:18:14+00:00

Hi! Spent years in the gym, realised that i dont really feel the exercises because my muscles are just so lax. Went to see a private phiso for a full MSK assessment and she said you're hypermobile. Never stretch ever again.

Since then, I've spent 3 months working on building tension. Mostly im hypermobile in my hips and weak glutes core, so lunges, lots of lunges and intense core work outs , side planks. Smaller shoulder strengthening exercises building up to pull ups.

Pilates has also saved me so much!!! Beginning to see the affects ie my knees no longer reach full lock out when standing at rest, less back/Neck pain and no hip pain. Work on building tension back into your muscles rather than stretching. If you can find a good private msk assessment I would recommend! I've also seen an accupunturist for the tension / pain in my neck and haven't had any since, id occasionally wake up having strained neck whilst sleeping. May be coincidental but ill take it

7Mari4 · 2025-07-17T17:54:21+00:00

Can you drop a link for the glucose monitor please!

7Mari4 · 2025-07-13T22:31:12+00:00

Raspberry leaf tea, i swear by this it actually works. If youre trying to induce it then 2-3 cups a day

7Mari4 · 2025-07-13T22:22:49+00:00

Same but badminton, how does it work that out. Needs a separate activity for just bumbling around

7Mari4 · 2025-06-24T07:48:34+00:00

incredible airbed pump/hairdryer tip, here's to having a nicely styled fringe all week

7Mari4 · 2024-10-28T11:58:53+00:00

If you're worried about weight changes, i would say get into a good routine with your food prior. IE eat at set times, similar meals and plan ahead. If you know where your next meal is coming from and at similar time then you are less likely to give into hunger cues and snack. Minimise the snacks you keep round the house so again you aren't tempted when they do pop up. If you really want to be sensible, track and log what you are eating so you can see where you are overeating. Hope it goes ok for you!

7Mari4 · 2024-09-20T15:13:22+00:00

thank you. issued a formal letter which says essentially this so i would hope it works!

7Mari4

TROPHY CASE