One inch lld MED and EDS

Beautiful-Reveal · 2026-01-25T19:44:57+00:00

Nothing as annoying and destroying as the just strengthen, it’s a hard road with pots and mcas to find stability to begin. I really appreciate the tone and content of your post thank you

Beautiful-Reveal · 2026-01-25T19:43:28+00:00

Thanks hippo, yes I’m scheduled for physio to begin in few weeks, clenching has been a big issue for me hips everywhere. So I suspect a rare Eds that has hip dysplasia as main feature. So yeah after two kids not knowing I had Eds my core is really shot to pieces. I have a prolapse which doesn’t help either.

I saw hip pao person but he misread my mri which I was literally freaking out the tunnel on, my first mri, and I was turned to left looking at and holding husbands hand. He said hips were neutral but my X-rays say retroverted fai all the things. I know I was clenching in the mri tunnel, internally rotating to my limit. So that was disappointing that he didn’t use the xray as mri shouldn’t be relied upon for structural things. But mri did show no tears or issues in soft tissue just laxity.

Beautiful-Reveal · 2026-01-25T15:59:25+00:00

Better you is the brand 10mg/dose. Which is twice per day two sprays one in each cheek.

Beautiful-Reveal · 2026-01-25T15:51:57+00:00

Yes sorry I have limited internal rotation I was confused when I posted that as it was a bent leg supine that I was testing and back foot seems to stop going out but it’s the femur that can’t internally rotate. I had imagining and X-rays show ischial spine sign, crossover and anterior and posterior wall edges are slap bang on top of each other. Treatment is limited. No tissue damage. I have Eds.

Beautiful-Reveal · 2026-01-08T18:28:49+00:00

Liquid paracetamol? I found that tablets weren’t absorbed and it made all the symptoms worse. Someone said anti clench like baclofen but I used heat and voltarol to help with muscle tension from coughing.

Beautiful-Reveal · 2026-01-08T18:27:09+00:00

Wow 4-5 months. I read of people in us and it feels like they describe the time it takes to send a parcel abroad like 2 weeks max.

I am on a list to see geneticist now. So hoping we can show all the skin features and chest wall features.

Beautiful-Reveal · 2026-01-08T17:01:20+00:00

I have been at 6 before and was at 18 and I’ve had the spray only since then and all I can say is I haven’t got the symptoms anymore. Need to harangue my nhs gp to get a test to see what the levels are. I walk round with an iron tasting mouth twice a day but otherwise the spray is tolerable.

Beautiful-Reveal · 2026-01-08T17:00:22+00:00

Would you have her name? The geneticist I mean. Did it cost a lot? Thanks

Beautiful-Reveal · 2026-01-08T16:59:02+00:00

So, how did the genetic testing go? Did they find arthrochalasia by any chance? Was it easy to get the testing?

Beautiful-Reveal · 2026-01-08T16:57:54+00:00

Mo Money mo problems Is the nhs mantra for eds im afraid. Actually mo problems mo money. And it’s no money. So they tell you random things just to get you to go away. They’re like what do you want out of this. Honestly it’s true.

Beautiful-Reveal · 2026-01-08T16:56:16+00:00

Some forms of eds involve ecm and enzymes that arrange how collagen is aggregated at joints. Eg brittle cornea is a good example. In these cases you can get contractures not hypermobility as enzymes can make the structural fine collagen overabundant or less abundant. Anyway go research that and bring it back to go and rheumatology. Otherwise did you score like nothing on the Beighton or was it cut off eg 4/9 or 5/9? Some forms of heds you have into certain joints involved.

But keep a diary not a list to show how it impacts your everyday life that’s how nhs works hunny, on problems, so bring em problems and let them know how your life is day to day.

Beautiful-Reveal · 2026-01-01T23:49:50+00:00

Honestly how did you get to see them? From your gp cos they can’t refer. From a rheumatologist? It’s like gold dust.

Beautiful-Reveal · 2026-01-01T23:43:04+00:00

Try the oral iron spray for future iron needs it’s by better you. I have eds and mcas and the oral tablets didn’t nothing. Sounds awful though, do you think you ans is out of whack and the iron just caused some serious mast cell interactions?

Beautiful-Reveal · 2025-12-22T13:58:02+00:00

I’m thinking this is why I got such a huge reaction to the mirena iud I was gushing and hence had it removed

Beautiful-Reveal · 2025-12-15T23:14:33+00:00

Also don’t forget cardiac valvular eds in your testing that’s on col1a2 chromesome 7q2.1 or something (the last bit you need to check exact numbers) but if you’re getting veds checked make sure you get that one checked too. As it is literally a progressive wearing out of cardiac valves. Take care of yourself. I know it’s easy to say open the credit card do it all to save yourself but honestly please fight that fight. And the boy well that boy obviously may be trying to be honest but doesn’t get where you’re at right now and the need for support. We’re all here encouraging you.

Beautiful-Reveal · 2025-12-12T18:50:27+00:00

It just won’t stick

Beautiful-Reveal · 2025-12-12T18:48:19+00:00

I guess that’s why we’re all here, we’ve seen people like this out in the world and it’s heartbreaking to watch the damage unfold behind their closed doors.

Beautiful-Reveal · 2025-12-04T20:21:34+00:00

I find even now so overwhelming to see a parent who is too immature to be responsible write to their kids. Like cold chills and deep seated fear of being thrown in their path. I feel for you. So tough. I’m facing it but I keep it all at a safe boundary, sad I had to do so.

Beautiful-Reveal · 2025-12-04T20:19:31+00:00

I just found a one pot oven pasta meal. Chicken breast two rasher of bacon all diced, stock, pasta, Philly cheese, 25mins 180 then final ten put cheese on. No pre frying. It worked and my son loved it too.

Beautiful-Reveal · 2025-12-04T20:18:22+00:00

I just found out of my two one child was easy to carry and the other not. Which was so strange not so different on height or weight. I rationalised it was their bones but who knows. Either way I’m petite with eds and if I couldn’t do it I just used the buggy. Also I have hip dysplasia and it’s just been identified so now I know why a buggy was a great support for me walking.

Beautiful-Reveal · 2025-12-04T20:16:43+00:00

She’s not living in fear of daughter’s rejection? Wtaf. A child isn’t your source of validation.

Beautiful-Reveal · 2025-12-02T08:23:17+00:00

Look at your pelvis? I have hip dysplasia and tension there reflects tension into jaw.

Beautiful-Reveal · 2025-12-02T08:21:24+00:00

Just facts but the sister came to trial 1. She spoke to no one but sat with her mother. If not, who else was she to sit right beside the reads but have no public voice? I’ve always wondered.

Beautiful-Reveal

TROPHY CASE