Anyone have hypermobility/ehlers-danlos syndrome have this happen?

[SoftAsShit]

I’ve got a GP appointment booked to discuss but it’s not until mid-September so just looking for other people experiences until then.

I saw out of hours a few weeks ago for pain in my leg/knee, and mentioned I’d recently had an cray on my hip as I get hip pain a fair bit (I’m only 29 years old🤣) The out of hours doctor asked if I’d be diagnosed with any hypermobility issues and I said no, not really knowing what it is I said is that the thing where people can bend their fingers back like this proceeds to bend fingers backwards and she looked shocked and said exactly that, and she recommends I see a GP to discuss potentially looking into hypermobility as it might explain why I get pains in my joints and connective tissues.

anyway; I’ve had a full day of running up and down the stairs and just doing some generally sorting around the house. So I’ve been moving a lot, lots of bending down picking things up.

but now I’ve sat down to unwind my hip, and my knee are pretty sore! they ache so bad and it feels like it’s radiating down the bones. I’ve already had an xray on this hip and they couldn’t see anything wrong but I don’t think tidying the house warrants me being this sore afterwards 🤣

just wondering if anyone had similar?

My children all have it. We exercise in different ways eg swimming, weights etc and stop when they ache. Lots of supplements etc

DD has pmdd and the pill was life changing.

I get 7/9 on the test. I've had foot issues due to flat feet and now have orthotics in my shoes. I've always done plenty of exercise and am pretty fit and strong, very few injuries other than a few niggles so pretty lucky on that score. The worse symptoms are internal - hiatus hernia, silent reflux and oesophagitis were causing me some nasty swallowing issues a couple of years ago. Better at the moment now I've lost weight and am eating less. I've had endometriosis and IBS which are asymptomatic at the moment. Don't really want to think of the potential state of my pelvic region, with hypermobility, endo and two DDs but all I can do is try and have a strong core and pelvic platform and it seems ok at the moment at menopause, touch wood.

I would strongly advise to wait for an assessment before you go to far down the road. Sometimes you can be unconsciously biased and might get a misdiagnosis. This is why Drs/Nurses and Physios are a nightmare to treat as they may discount symptoms that might be relevant.

A lot of people google symptoms and then experience dis-satisfaction when it isn’t what they thought it was which leads to mistrust of the system… see all the people waiting for a “neurodivergence” diagnosis.

It’s important to know that it is not possible to pull joints out of alignment with mild activity. If your joints are dislocating then you need to have them assessed for dysfunction and possibly supports.

Connective tissue is EVERYWHERE in your body including your organs and your brain. I am hypermobile but not out of the range that I would be considered for treatment, the range of normal is quite broad for women.

I had all the joint issues since I was about 11. I was diagnosed with H-EDS when I was 49. Seems it has also affected my heart. I recommend full work up. Also, be prepared for Dr to dismiss you completely. They often treat EDS diagnosis with the same respect that they do Chronic Fatigue Syndrome. (They assume you’re looking for a diagnosis to get onto benefits)

I don’t doubt it works great for some people. But I came off the pill in my early 20’s because of how horrendous it made me feel. I don’t have any plans to use any hormonal contraception again.

Dd felt exactly the same as you and was convinced to give the mirena a go. She was very anti hormonal contraception after really not getting on with the pill. But apparently the hormones stay more localised and aren’t as systemic. So far she’s had no side effects from it at all and her periods are loads better. Might be worth considering?

Is that the coil? I can’t think of anything worse, too many horror stories. Plus if there’s hormones stay local then is it effective for PMDD? It’s my mood and behaviour that changes that I struggle with more so than the periods themselves.

I have heard a couple of people say the pill has helped massively though so it might be something to consider.

I was diagnosed with hypermobility syndrome (not EDS) by I physio when I was 50, I went to her for treatment for a foot injury. I have pain more or less every day now, and regular injuries, mainly feet, shoulders and lower back/hips. My knees aren’t too bad so far.

I saw my physio regularly for a few years so I have a lot of advice on board for when things go wrong, which they increasingly do (I’m now in my 60s). She recommended ‘dynamic stretching’, i.e. constant moving rather than holding stretches for too long, and lower impact exercise. So I don’t sit for too long, and I walk, swim, do yoga and physio stretches. The stretches are boring but important. She also recommended the right type of footwear for me which has been very helpful.

Also important is not gaining weight. I aim to stay around a BMI of 22/23 which has reduced pressure on my joints.

Yes it's the coil - her symptoms were mainly physical (though I would say her moods are very much affected too). Physical symptoms seem a lot better, not sure about her moods.

@SoftAsShit - that’s not quite how the coil works. When you swallow tablets, the dosage is very high because medication has to pass through the liver where most of it is recognised as a toxin and is filtered and excreted. The hormones in the coil work topically, providing a steady, slow-release dosage through your skin into your bloodstream. Because it doesn’t need to be metabolised via the liver before the it works on the targeted areas, the dosage is much, much lower. It works quite well for PMDD/mood/pain/dysmenorrhoea.

I was finally diagnosed with EDS last year at 38. I’m constantly in pain all over my body. I have barely been able to eat for a week as my jaw is playing up. Things are definitely improved when I commit to the gym but then I tend to get a bad flare up and it puts me back to square one. It’s a horrible illness to have.