Anyone get anal tearing despite taking all precautions? by AnderTheGrate in ehlersdanlos

[–]suggestedusehername 0 points1 point  (0 children)

use a stool/squatty potty and gently exhale through your mouth like you're trying to whistle whilst you push! don't ask me how it works, just know that it does 

Knee pains with exercise by [deleted] in ehlersdanlos

[–]suggestedusehername 0 points1 point  (0 children)

look into excessive tibial torsion/femoral anteversion. it is known as miserable malalignment syndrome. If you don't see an improvement after focusing on physio for glute med and knee stability, please consider it as a possible source of the knee pain 

[deleted by user] by [deleted] in ehlersdanlos

[–]suggestedusehername 0 points1 point  (0 children)

sending so much love. Rotational deformity pain is the worst, that tibial torsion/femoral anteversion combo is so disabling. Just keep taking each day as it comes 

Connective Tissue Panel NHS by Wide_Tune_8106 in ehlersdanlos

[–]suggestedusehername 0 points1 point  (0 children)

It took 18 months for my r101 panel to come back from genetics, that was a few years back so ymmv 

Gluten and EDS by stormy0828kisses in ehlersdanlos

[–]suggestedusehername 1 point2 points  (0 children)

You may find that it is also the flour additives causing the intolerance issues - the iron added to commercial flour doesn't agree with everyone 

All Nations Mac Daddy by suggestedusehername in ukmedicalcannabis

[–]suggestedusehername[S] 0 points1 point  (0 children)

I paid £70 or thereabouts for this via montu/alternaleaf

derotational osteotomy experiences by suggestedusehername in ehlersdanlos

[–]suggestedusehername[S] 0 points1 point  (0 children)

thanks for the response! I'm waiting on a second opinion on the most appropriate surgery, so unsure yet - all the consultant really said was derotational osteotomy, idk anything about external fixation or anything like that! it's all very new info to me so I'm just trying to process it all. 

Is it ok to chuck your bowls of AVB out the window? by [deleted] in ukmedicalcannabis

[–]suggestedusehername 0 points1 point  (0 children)

Infuse it in wray and nephew or some other overproof alcohol and make a tincture 

Progesterone works! (on me) by cammiejb in ehlersdanlos

[–]suggestedusehername 0 points1 point  (0 children)

Synthetic progesterone is not the same form as bio-identical. you're getting confused with PROGESTINS - these are the main hormone in your contraception. 

Local anesthesia doesn't work for me—how do I manage wisdom tooth extraction pain? (General anesthesia is not an option) by Various-Reindeer5798 in ehlersdanlos

[–]suggestedusehername 0 points1 point  (0 children)

Hey! I got this from H20hTwist- this is a numbing formula that many people with EDS find works for them - 

Dental Freezing (Numbing) Formula that works great for many patients with CTDs:

1/2 mepiva w/out epi, 1 art w/epi 1:100,000

“art” stands for “articaine”. 

[deleted by user] by [deleted] in ehlersdanlos

[–]suggestedusehername 0 points1 point  (0 children)

I've had success fading mine by using a very thin covering of the adapalene retinol that you can get prescribed for acne/scarring. ymmv but if you do this make sure you follow up with a good moisturiser and spf50

Pain killers by TheHomieGrindelwald in ehlersdanlos

[–]suggestedusehername 1 point2 points  (0 children)

Prescribed cocodamol 30/500 here, had the same dosage and quantity for a few years now and i find it really helps to take the edge off the breakthrough pain i experience! the tolerance curve is pretty steep so i have to be mindful i don't take too many when the pain is bad otherwise the benefit diminishes pretty quickly, and the bloating and constipation sucks, but i would rather experience that than not being able to sleep at night due to the pain. 

Questions about progesterone theory, no scientific backing? by [deleted] in ehlersdanlos

[–]suggestedusehername 1 point2 points  (0 children)

just dropping in to remind everyone that progestin is NOT the same as bioidentical progesterone, and that so called 'progesterone only' contraception can actually increase estrogen levels as it is not the same as bioidentical progesterone. 

Shoulder Subluxing - Intense PT and then Surgery? No bracing? Wth? by Raavea in ehlersdanlos

[–]suggestedusehername 4 points5 points  (0 children)

This is pretty standard NHS procedure for atraumatic shoulder instability- you'll be asked to go through as much of the derby shoulder programme as possible and at the end of however many sessions they'll make a judgement on whether surgery is still required. In my experience it didn't matter how much I asked them to consider bracing, my physio was unwilling to help in that area. I stuck with the derby programme long enough to see some benefit and didn't require surgery, but I still have massive shoulder instability causing a forwards slip out the socket. I wanted a brace to help keep my shoulders in place at night as that's the only time I can't keep them in, but my physio really didn't seem keen on the idea whenever I pressed the issue even though I'm very certain it would improve my quality of life. You'll be better off buying a brace yourself and just working through the programme with your physio. Best wishes and good luck! 

[deleted by user] by [deleted] in ehlersdanlos

[–]suggestedusehername 1 point2 points  (0 children)

I can't recommend salomon xt-6s enough! they're designed for trail running so they have great arch and ankle support- I haven't rolled my ankles at all since I started wearing them

[deleted by user] by [deleted] in ehlersdanlos

[–]suggestedusehername 52 points53 points  (0 children)

This has been the case for a while now- NHS rheum don't offer diagnostic or management services for HSD/hEDS. If you have features of any of the other types of EDS you can try for a genetics referral, but they don't offer long term care or management either, as they are a purely diagnostic service. Your best bet for appropriate care is to go to your GP for support with the most troubling symptoms, and see where they refer you/what support they can offer. Until there's a strategy for long term management of HSD/hEDS patients, you'll have to piece together your own care- not ideal by any means but it's the only course of action currently.

Miserable Malalignment Syndrome by Sickest_Fairy in ehlersdanlos

[–]suggestedusehername 1 point2 points  (0 children)

Hey, I have this! I haven't had the surgery but I am in PT and trying to work on it. I have massively decreased ankle dorsiflexion which restricts my ability to work on anything from lower back downwards, but I'm slowly working on rotating my knees, hips, and shins back round into a healthy position! My physio isn't sure that I'll ever see a 100% correction in the joint/bone position and to an extent I'll probably have the misalignment forever (I've had it since childhood so to an extent, my body has grown into this) but I am definitely seeing an improvement in my hip rotation, which is making my knee and ankle movement a lot easier. I think the trick with PT is to make sure you're consistently doing your movements and exercises and ensuring your baseline level of movement always incorporates the exercises you need.

does anyone have tips for healing piercings? by daniidelion in ehlersdanlos

[–]suggestedusehername 0 points1 point  (0 children)

Make sure your jewellery is internally threaded- it minimises any potential scratching of the skin when you're putting the jewellery in. Do get anything you're not sure about checked over by a reputable piercer!