Anyone here with hypermobility syndrome/hypermobile EDS?

[FairTurtle]

Have posted about this before in the context of other issues I'm having (long COVID) but recently diagnosed with hypermobility spectrum disorder in my early thirties. Never noticed any prior issues but I'm 8/9 on the hypermobility scale.

Recently been having lower back pain, an unstable and overly mobile collarbone and shoulder constantly clicking, and issues with my hips painfully clicking. My whole right leg just feels very strange and heavy when walking compared to the left.

Any advice? I know the hypermobility is a genetic defect and I'll always have it but I've been in constant pain for the last 2 months. Has anyone ever resolved their pain? Or at least made it much more manageable?

It's so strange how all my issues suddenly have appeared after nothing my whole life. I wasn't one of those children who has able to do weird and wild things with their bodies, party tricks etc, which is why thos has surprised me so much.

I live in London in case it's relevant. I see an osteopath, which hasn't really improved anything (just temporary relief for a few hours).

Prior to this, I had some hope that I'd recover from long COVID. Time has helped a bit, plus all the new research happening has me hoping there may well be treatments in the next 5 years or so. But the joint issues, pain etc related to the hypermobility just makes me think what's the point if I'll still be disabled :(

I have hyper mobility, eds type 3. I've always had it. You need to see a physiotherapist, mine are/were fantastic and show you ways to manage symptoms by doing certain exercises/adaptations etc. That should also help with the pain

@TheOpalReader thank you. Are you able to live a normalish life? I've arranged to see a physiotherapist, but I was advised not to see a regular one, so have booked to see a specialist hypermobility one.

Just not that hopeful because the long COVID is exacerbated by exercise so not convinced I'll be able to do a lot of strength training.

Jeannie de Bon on socials /youtube is good for physio advice for bendy people. She has her own app as well

Yep a very normal life, apart from if I do a lot of 'normal' exercise or push myself I really feel it the next day. You may notice more of a difference if you've only just noticed/been diagnosed. I've grown up with clicky/bendy joints and always known my limits. Obviously there's a scale of how much it affects you. Mine was a normal physiotherapist at my local hospital (I was referred at about 13). I don't do strength training it's more core/stretching. Keeping my joints moving really helps but it's a fine line between gentle exercises and feeling like I've been hit by a train. I hope you manage to find what works for you. Don't be afraid to look for another physiotherapist if this one doesn't work. You'll need a good relationship with them to trust them.

@TheOpalReader thanks so much! It's interesting because I've been told that stretching isn't advisable for hEDS but I guess different things just work for different people?

I'm glad you're able to live a normal life! Do you mind if I ask, have you had periods of issues with joints/pain etc that you've gotten past or worked through? I'm just a bit terrified that all my current issues, that have literally just appeared over the past few months, are forever. Or have you never had significant pain?

I’m hyper-mobile, score 9.

I can’t say it’s ever given me serious issues though. I’ve dislocated my patella twice and my knees generally feel ‘loose’. I noticed a great improvement to their stability when I focused on leg strength training and running (which is possibly not the solution for everyone). I also do loads of stretching and yoga, which again is probably not recommended for some.

I don't go crazy with the stretching but I find I stiffen up if I don't which makes my joints really sore. It certainly is a minefield with finding something that works for you. But if you take it steady and figure out your limits you'll be fine. My mum has eds too and she can't do any stretching as she dislocates really easily. I do get periods where I struggle, I have to take it easy, pain relief, and really watching what I do. But personally for me I'm still able to live a relatively if not slower paced life. I won't be going hiking any time soon but I can have an ice cream and wander around a flat park.

Hi,

I have hypermobile EDS.

I have a real issue with my knees and elbows specifically - I’ve always had very clicky joints but I’ve torn the meniscus in both knees, the first time it was a significant tear requiring 2 surgeries to eventually remove the meniscus, the second knee went as I was walking through town and it was a traumatic injury, worse pain than labour. That time I tore the meniscus and ruptured the ligament which needed suturing.

I’ve also torn the tendon in both elbows and had multiple steroid injections. I’m currently struggling with pain +++ in the right elbow and have a cons appt in August. It’s miserable!!

I do lead a normal life with a full time job but I do just seem to have accepted that pain is a normal thing for me. Nice to ‘meet’ others with similar issues!

Hello, I don’t have long covid, but I do have hyper mobility but have always been super flexible. I ended up with a prolapsed disc in my lower back during pregnancy 18 years ago due to it. Yes you get clicking/aches/stiffness feeling in joints & muscles etc, mine can flare up and down. You also need to be very careful if doing certain things because it’s easy to overstretch or damage yourself. My sister has it too (often hereditary) and her knees are damaged due to lots of jogging when she was younger. We both enjoy yoga too, so we need to be very self aware and not overdo poses just because we can. So easy to rip or damage joints/muscles. I have done this in the past.

We also both have very low blood pressure because of it. POTS often seems to go with hyper mobility, so that’s worth reading up on too. It shares a lot of symptoms with long covid/Fibro/CFS/ME etc. They incorrectly diagnosed me with Fibromyalgia many years ago which never felt right, but it turned out to be the hyper mobility in the end. Explained so many seemingly unrelated symptoms, it can affect more than you think. For me, the diagnosis also helped ease anxiety of why I had these seemingly unrelated symptoms.

Going forwards, there’s not much they can do for it, but I find, being aware of it is very helpful so I can avoid as much as possible causing problems. For exercise I will only swim(gentle breaststroke), walk or do very gentle yoga, and by managing myself better I therefore cause less issues. Hyper mobility is an inconvenience, but usually manageable to a certain degree. Personally I find my symptoms especially with my back are better when I am fitter/carrying less weight as better core stability gives my hyper mobility joints more strength & stability. Also pacing yourself when you need to. I think individual cases can vary in severity so each person is different. I manage pain which thankfully is rarely too unbearable with ibuprofen or paracetamol only. Anyway hope that helps but I would definitely recommend learning as much as you can about it. Hope you feel a bit better soon.

I have hypermobile EDS and was your typical party trick contortionist child. I sailed through to the age of 40 but since then have had various issues with feet, ankles, knees and hips. At the moment I’m working on gently building strength because I just can’t push myself to the max like I used to.