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 sister has hypermobility. She has to work very consistently in the gym to keep everything strong.

I have hypermobility and have had a very busy day today and my hips and knees feel just like that. I get flare ups where my joints bother me more and I have to go a bit more gently.

I am not quite sure what you’re asking op? If it’s ’are you in pain often?’ then yes, as someone diagnosed with hEDS, absolutely, I’m nearly always in pain to some degree or another and it’s worsened by doing ‘too much’. Too much can look different for different people, of course. With that being said, EDS is not ‘just’ being bendy/hypermobile, there’s rather more to it than that, unfortunately!
PP is spot on saying keeping on top of strength and muscle tone is so important.

I am diagnosed with EDS and everything hurts pretty much. Ankles, lower back, hips, my right shoulder has been totally buggered for months and I can barely get a tshirt on and off.

look up the beighton test and work out what your score would be.

if you get diagnosed they’ll probably just give you a leaflet and discharge you. Agree that weight lifting helps.

I have Elhers Danlos Syndrome. Pain happens for different reasons. Because main connective tissues are too loose, other usually smaller muscles over compensate an become tight. Repetitive use causes me pain, so I could do walking for a day and my knees would be fine, but go up and down the stairs more than a normal amount of times and my knees are fucked. Subluxation causes me more issues than dislocation.

Theres more than just joint issues to Elhers Danlos too, im happy to answer any questions you might have.

I can bend my fingers and sometimes get horrible pain in them. Same with the backs of my knees. Can also bend my elbow the other way but never been diagnosed with hyper mobility

I have osteogenesis imperfecta and hypermobility, yes this is all very familiar.

I'm in pain every day and my joints always ache, I experience more fatigue than the average person as well. I try to keep active with walking, gym and strength training, Zumba, always keeping it low impact.

I constantly have some sort of injury despite being really careful when I exercise, it can be pretty dispiriting so I get it. As others have said, the GP could test you using the Beighton score which looks for various indicators of hypermobile range in your different joints.

Don't expect a lot of help for it though. I haven't had any help in my adult life apart from reactive help for injuries, the NHS couldn't give a shit about chronic connective tissue disorders. I only recently got referred to rheumatology, where I'm seeing a clinical pathologist, not even a rheumatologist who is a bit crap. I'd like proper help with what sort of exercise I should do, maybe a rehab program or clinic. But that stuff just doesn't exist in my area like it once did.

Thanks all!

Sounding pretty similar with the generalised soreness. I’ve also been having trouble with my shoulder for a little while.. and if I sleep on my side the middle of my sternum can get a bit sore too! (Odd one for me?!)

I also find my hip pops when I go on long walks, and my jaw is prone to popping in and out, I’ve suffered from TMJ for years.

id love to know more from the people that have offered what their experiences are, and what else they notice as I am ticking most boxes here and I just don’t want to be fobbed off when I go 😔

I did wonder whether there was much help involved. I’m mostly looking for a diagnosis to help myself. I have had issue with being in chronic pain for at least a year now. It’s really ramped up my health anxiety wondering what wrong with me, with every ache and pain I’m wondering if it’s something bad.

DH also doesn’t quite understand how knackered I feel constantly, and that doing simple tasks like hoovering makes me feel like I’ve done a half marathon 🤣

by the sounds of it exercising helps, something I don’t tend to do a lot of.. because I get so sore! But sounds like I have to just get through it to get better-ish?

Just about to google the beighton score..

Just having a look at this Brighton score.. I can’t do the bending over and touching the floor thing.. and I can’t really tell if my pinkies bend more than 90 degrees? Does this look more than 90? It looks just about 90 to me maybe?

My hips are hyper mobile. I only discovered this after being referred to physio therapy for a bad knee! It has been ok since (was a few years ago now), but the physio was surprised at my hip rotation 😉 🤣 and said it was hyper mobility.

so I would say that it could well be related.

Hi - I do, I have got a private diagnosis, you won't get an NHS diagnosis for the HMS HEDS . I use this https://gptoolkit.ehlers-danlos.org/ but really i have to go for each symptom and go through escalation and consultant referals. I have private physio and private podiatry with specialists in EDS, and NHS referrals for dermatology, gastrology and gyne.

I found NHS physio and private general physio to be either useless or damaging.
You also have to test a whole bunch of stuff and see what works for you.
You should also look up the related syndromes, Mast cell activation, POTS and see if it rings any bells.

Agree you need physio with a hypermobility specialist (absolutely not a general physio) to strengthen everything

I was diagnosed privately with hyper mobility 5 years ago. I attended a physiotherapist for hip/back pain and she referred to a podiatrist for a biomechanical assessment. I purchased some inserts for my feet to balance my hip out, made loads of difference. I can also tell a difference if I stop exercising and gain weight, putting too much pressure on my joints. Exercise, especially strength training helps with symptoms, I need to get back into it!

For me, and a lot of people with Elhers Danlos we tend to have a very vast range of issues, often mild. Something that Dr's pick up but almost dismiss. I have ectopic heartbeats, fleshy heart value, high blood pressure (diagnosed at age 26), teitze syndrome, gynea issues, stomach issues without a clear cause, I broke my volar (sp) plate. We tend to have issues that drs think hmm there is that but it shouldn't cause issues, or issues that drs are a bit baffled by.

I get what I describe as organ pain. As connective tissues also cover fascias covering organs. I can feel ovulation, and follicles on my cysts. I can kinda of feel poo moving around my bowels as other connective tissues then move. Sensations in joints and muscles often feel like wet grainy sand.

I have detruser underactivity of my bladder too.

Theres just lots of issues through the body.

I would also say I have private physio usually a few times every year, if you find a good one who understands your conditions that can help with any issues. You don't necessarily need a hypermobility specialist physio - a decent physio with a wide range of practice will have experience in hypermobility just like any other bone/muscle disorder.

With exercise, listen to your body and don't overdo it (I say, having frequently accidentally overdone it when my joints have moved too much!). Strength training, swimming and walking are great.

That’s more than 90 degrees. My fingers aren’t hypermobile at all…..you won’t necessarily be hypermobile everywhere so don’t worry about not been able to touch the floor. I’m not sure how old you are but the beighton test accounts for people being over 40 not scoring as high, so I can’t touch the floor either but could when I was younger.

so for me it’s mainly my lower back and pelvis which is very hypermobile. Annoyingly the beighton score doesn’t test all areas. It was a good osteopath who first raised the possibility of EDS for me, he said he can tell that someone’s muscles feel very different and he knew straight away I had EDS. My Dd was already diagnosed so I went to see the gp who pulled a face when he asked me to bend my fingers back and couldn’t but he referred me anyway as I could demonstrate that my knees and elbows go backwards.

the rheumatologist was very good. I had taken a list of my “issues” and nearly got to the bottom of a sheet of a4 paper. Plenty of stuff which people with EDS have issues with such as bladder issues which aren’t on the beighton test…..hiatus hernias as well. Flat feet. Horrendous painful hiccups most days which last for ages! Crazy fatigue. Shoulders which pop out of place and stay slightly out for weeks at a time. Tendon problems in my ankles.

Oh my! Hiccups?! I suffer so bad with painful inward hiccups all of the time! They also make the worst squawks-squeak when I do them 🤣 it’s really embarrassing!

So I can do all the Brighton score, on both sides other than bending down and touching the floor.. so I think that’s scores 8/9? If they don’t class my pinkie fingers bending then 6/9.

Is it worth me getting in contact with an osteopath and/or rheumatologist privately to build me a case for the GP?

I’m just conscious that they see me as a perfectly fit and healthy 29 yea told woman who’s just anxious and hormonal (I’m 99% sure I have PMDD but that’s also been brushed off with a ‘try the pill’ massive eyeroll )

One of my (now adult) kids has this. They are in near constant pain here or there. Strength exercises are key. They also do physio periodically to identify things they need to target more specifically at that point in time. They have regular dislocations as well, always have had since childhood. It’s all a bit shit really but is what it is.

ETA - Personally, wouldn’t touch an osteopath with a ten foot pile. I’ve seen first hand the damage they have caused on quite a few occasions. Also had a colleague who unfortunately had a paralysed baby pass through, courtesy of an osteopath. They make me shudder.

I'm hypermobile (not ehlers danlos) and I have to stretch before I go for walks and do exercise because otherwise if my muscles are tight it pulls my joints out of alignment and creates pain. I have a full stretching routine I do pretty much daily and it helps enormously. Building muscle and keeping yourself strong is important. Also focus on your core particularly lower stomach, my hips are way too flexible and a strong core helps hold me together.

So it's helpful but not essential to get a diagnosis as it helps you remember you're not crazy and there's a useful framework for understanding interrelated conditions.

I went to this guy he was helpful for the assessment and diagnosis paul brennan https://idct.co.uk/who-we-are/

However the GPS won't care about it as much as do you make criteria for specific diagnosis. Nhs rheumatology etc don't see heds - if you join some of the heds Facebook groups you'll find a lot of specific. Information about the complexity of getting good care. I normally go in with a specific request either to ask them to give me a prescription from the eds toolkit suggestions or to make me a referral. I usually avoid say9jg I have heds in case that is used as a reason not to see me. I list my symptoms and emphasis that it is severely impacting my quality of life/ sleep/ work. I avoid making it sound like I am anxious or neurotic. It's a minefield.

I was referred by my GP to rheumatology and diagnosed at my first appointment. Then a referral to OT and physio.

Would be grateful for any decent physio recommendations in central London or Herts if anyone has any!

@SoftAsShit I would get a diagnosis as there can be other issues not just your joints.

My dd is 18 and was diagnosed with hEDS on the NHS and receives support and treatment via the NHS. She sees OT, biomechanics, physio and cardiology.

She has constant pain and her joints subluxate regularly. Bladder and bowel issues, strange lumps (has had 3 surgeries for fibrous and vascular lumps), POTS, mast cell activation syndrome (horrendous hives out of nowhere), reflux and awful hiccups, flat feet, migraines, fatigue, bruises/scars easily, excessively stretchy skin. There's quite a lot more tbh.

DS has hEDS as well and he has pectus excavatum which affects his sternum.

Women with eds are more likely to have pmdd. I’d go and see the GP and see what they say. I was definitely referred to rheumatology and this was a year ago. I know some places rheumatology won’t accept referrals and say the GP should diagnose

have a read of the GP toolkit so you can go armed with what they should do

https://gptoolkit.ehlers-danlos.org