EDS / Hypomobility and sex

So I'm still being diagnosed with bits and bobs since being unwell last year onwards. Starting to adjust as I've been given more medication to help. Anyway yesterday I saw a new physio and they said I have hypermobility / EDS which explains a lot as I have joints pop out and other symptoms. It's possible I have rheumatoid Arthritis and sjogrens too but I will know more later this month.

Anyway I was just wondering if anyone else has eds / hypomobility and if it has affected your sex life? I've learnt to use loads of different pillow now. One day I'll get around to getting some liberator I'm sure too. But sometimes my pelvic bone and hips pop out which is annoying during sex.

I'm getting the right type of physio soon, apparently I've been given a lot of the wrong physio over the years which explains a lot. But hopefully that will all.

It's not something i have or have ever experienced sorry but i wanted to say that it's great news that you are now getting the right physio. I really hope it makes a difference for you. Best of luck.

Hey Lady Ness, I provided therapy with adults and kids with EDS , HJS and POTS. I’m an OT though so used activity to exercises not just pure exercise and joint worked with Physios. What do you need to know?

I have hypomobility and it’s never hugely affected my sex life. I think really it depends which joints are the worst

For me the only time it’s caused issues is if my legs are pushed right back. This causes my hips to pop out so when my boyfriend pushed them back now I make sure my arms are around them to I can stop him pushing them too far

This is the only issue I’ve really found :)

I am hypermobile as well. Went to a physio as my knees are given me gyp running. Physio said suprised i had not had problems before but then i had always been fit.

She gave me exercises to strengthen my muscles in the right places and correct my gait which has helped no end. Hopefully when tyou see a physio it will help significantly.. Key thing is to keep the exercises up otherwise you will be back to square one quickly.

As for sex, yep get uncomfortable in certain positions so dont stay in them long and to be honest me and OH just make it a bit of a joke rather than get hung up on it.

Good luck!

Thing about Ehlos Stanlos is it’s not just the joints, which generally it is with HJS and its a lot more invasive to joints.

It’s all the connective tissue in the body, needs a bit more care because we are talked no heart, lungs, GI tract, eyes, ears etc....anything with cartilage including your pubis symphysis at the groin of your pelvis if you are a lady.

Effects of EDS can be nclude things like

Poor vision

Fatigue 

IBS type symptoms

Hypermobile joints

Joint pains

Poor motor control due to reduced proprioception

Breathing difficulties 

Reduced strength

Lady ness I can talk you through this safely if you want to know more and get the ball rollng.

What you’ll need to do is strengthen the muscles surrounding your joints to counter ligament slack but the way we need to do it needs to minimise high impact, hyper extension of the joints, hyper flexion of the joints ( to reduce risk of subluxation or dislocation) whilst allowing you enough energy to get through the day.

I wonder if L H will drop the no contact rules for this one? If not we can just chat on here but I think you will need a personalised plan in lots of areas of your life for this...start by reading up on joint protection. It will probably be linked to Rheumatoid  arthritis but it’s super relevant to your condition.

Also do you swim? When you swim you need to do breast stroke with your arms front crawl with your legs no backstroke, butterfly or front crawl arms and no breast stroke kids kicking, it makes the shoulder and hips too incongruent. Also consider elliptical trainers and walking on even ground. No running or jumping...

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@https://www.lovehoney.co.uk/community/members/pansy/ yes my hip can pop out like that too, I find that most of my joints can pop out, it can look really cool but gross at times, my fingers I use to do as a trick as a kid but didn't think too much of it. Physio has said that every joint seems affected, heck even my toes poped out and kinda tied together the other day and made me fall, really sucked.

@https://www.lovehoney.co.uk/community/members/illtakethehighroad/ Yes they checked my gait, and posture which are both really good, but did read how it can cause extra strain ect. I've always had very good posture and walking stride. Glad the strengthening exercises helped you! =)

Hey Mr Peebs, I was assessed by another physio on Monday and was even more hyper mobile than the other day. I have poor vision, even a squint was found only last year but it is thought to not be neurological but the muscles weakening more and more. I have blurred vision without a known reason too, this is on top of my other vision things which were picked up on as a kid, the hospital has said not all are due to my eyes themselves but something else going on in my body. I have extreme fatigue and always have, I have pushed myself in the past but have resulted in me not being able to leave my bed, once was 8 months, even lifting my head can be hard. I have no coordination at all and bad motor skills, this was put down to dyslexia. Joints are hypermopbile, in all, but mobility has gone a bit as I've aged due to injuries, but I can still do things like turn my feet backwards and touch the floor without bending my knees, for example. As a kid my ankles dislocated loads, was a mega pain. I can weight train loads and yet still not gain muscle and strength. I have extreme IBS at times which diet hasn't actually helped, if anything trying things like fodmap has made it worse in the past. I have tachycardia, which I believe is POTs, at first doctors thought stress, but cardiologist has confirmed it's not stress, and ambulances have too, they just don't know why my body is doing it, it often happens when sitting, lying, or standing for too long, I tried a reduced salt diet as over the years I've carved salt and it actually made me have tachycardia loads more regularly and for longer times and higher heart rates (often my tachycardia ranges from 140 -200), I can't take beta blockers as I have a ntaurally low heart rate which can go down to 50.I get raynauds too, which may be due to something else, last physio said sjorens as I have extremely bad dry eye but I know some with EDS have it too. I have a lot of joint pain.

I do pilates daily, weights regularly but can't go too high on some due to DDD and bulges. I have an elliptical trainer which I use twice a day most days at a good resistance level. I did use a weighted cable machine for a bit but one physio said stop and to focus on stretching more as at the time my arm wasn't that mobile when I tried to move it due to pain, but when GP moved it it had full range if not more, just the pain was getting to me.

What you said regarding swimming sounds right, backstroke or my legs made my hip a lot worse plus damaged my lower back more,front crawl with my arms just made my arms pop out more.

I have been using some support things for bits like my hands, particularly with raynauds, but have found they do not help with joint pain, but I have found kinsology tape to be good, but extremely expensive.

I know it may sound odd but I was getting extremely bad round ligament pain for about a month when I thought it was only meant to happen during pregnancy. I have painful illac crests too.

But twice a day I use my elliptical, I do pilates, then I have a series of arm exercises I do, squats here and there, one legged exercises etc. Which seem to be soe of the exercises I'm getting told to do by the physios, although I am doing them. I use a weights bench a few times a weeks, and do other forms of light weights throughout the week. Sometimes I do a bit of tia chi. I took a few months off last year and things didn't get better and if anything things got worse. I've lost weight and gained weight here and there and doesn't seem to affect pain levels. I do some restistance band work too.

I'd be ok with you contacting me if they allow, but I'm really not sure how you can help, it just seems like I'm doing a lot of what the physio's and doctors have told me and many of it I've been doing for ages anyway, such as side lying clam, bridging, etc. It's crazy. I have two siblings whose joints pop out loads too, and have tachycardia, and other issues as well (only found out recently they're going through the same), it's just strange that multiple people would have it, although it seems to be affecting my body worse, but maybe because I'm a woman.

Lady Ness, I am sorry to hear your suffering, I hope you feel better soon.

Hello all, I just thought I'd update you all on what's going on. Well I saw someone regarding all this, but as they offered no tips and didn't check things fully I've requested to see someone else. But apparently I'm experiencing chronic pain caused by being extrememly bendy. I saw a physio who is in the know of hypermobility and they have suggested the London clinic as it seems to be affecting my body badly. In the mean time I'm being offered a brace for my knee to use from time to time. The physio also noticed my shoulders weren't in position correctly, and when she helped me correct this my costocondritis vanished for almost two weeks, up until I feel and my upper body pulled my ribs around funny in the process, but hopefully I'm learning how to put all my bones back in place slowly. But really looking into it all there's not much that can stop my joints from popping out loads, so it's learning to adjust things.

In regards to sex I've had some ideas on how to modify pillows and things to help stop my knees bending backwards and things.

But I guess it's partly a time will tell thing.