Hypermobility - accepting this is how I am

[alittlelifex]

After many (many…) years of chronic knee pain which gradually migrated to being primarily my hips, and being told repeatedly that there’s nothing specifically wrong, I found out my hips and knees are hypermobile. I never realised this because I didn’t know I had any additional range of movement and assumed everyone could move in the same way as me.

I’m happy to know what it is and what causes my pain. My GP also thinks I could have a labral tear on one side due to horrible stabbing pain and instability in the front of my hip when I get up, but this also can happen on both sides.

I’m 28 and a teacher and I just feel really quite down at times because today I’m off work hobbling about with my grandad’s old walking stick. I’ve been explicitly told I’m not allowed to come in when it’s like this (tried once and SLT were not happy). It’s just sometimes overwhelming to realise that this isn’t something that I am going to be able to just have treatment for and be done with. I didn’t really expect that to be the case after so long but still.

I would appreciate any similar experiences 💐

I’m thinking of getting some crutches for days like this. Do these have to be bought online?

Ask for a physio referral - there is lots you can do to help with hypermobility although it is not "treatable" as such. Strengthening the joints makes them more stable. A physio can also do a general assessment of all your joints. Podiatry may also help - often with hypermobility comes "flat feet" which can be supported with insoles - this can reduce the strain on knees / hips to make things better. the GP can also support with adequate pain relief - or refer to chronic pain clinic if they have run out of ideas.

In some areas you can self refer to physio - worth having a look.

SLT also need help to understand how it affects you - it can be considered a long term disability. Do you teach primary or secondary? The solutions would be different depending on what you teach!

@handmademitlove thank you for replying!

I need to chase a physio referral. I saw one for an initial consultation thing but then she said the next step was to book in for a hospital consultation to see about getting an mri for the possible labral tear.

It’s good that there’s things I can do, and I do feel positive about that - I used to do yoga but have been advised not to carry on and do Pilates instead so I’m going to look into some classes. I knew it wouldn’t be like “oh here’s this quick treatment we can give you and you’ll be fine!” but I guess it’s just the finality of that definitely not being the case.

SLT are very supportive - I teach primary and they’re incredibly eager to make sure that I don’t push myself at all (offering for me not to do school trips etc). I think the difficulty comes from me feeling like there are times where I can come in but I will be slow/visibly limping a bit or needing to use an aid, but I think they see it as a blanket “shouldn’t come in if you can’t walk completely normally”. It’s not as black and white as that and they’re almost too keen to make me rest, and I just resent my condition for making things harder. I know some of it is just me resisting.

Have you see. Orthopaedics or Rheumatology. I have dislocating joints with my hyper mobility. Thumb dislocated this weekend, my shoulders, ribs and knees also dislocate regularly. I now have a WFH job as it’s just too uncomfortable working in an office and I’m off sick to much if I do.

you need to see a hip expert in orthopaedics as they will understand the options you have as well as referring you to physio.

Hi hope your feeling better, I have Hypermobility spectrum disorder also 28 and got diagnosed last year, after a lifetime of anxiety knowing there’s something wrong, with swollen veins, passing out, alot of joint pain, spasms, back seizing up, anckles giving way, no strength, iv been back and forth to Docters and hospital, test after test, after seeing 2 rheumatologist, they basically told me that the best help with symptoms is to keep moving and that we need double the excersice as any “normal” person, but not to overdo it too, I go for physio, which helps, but i have noticed if I have a couple of lazy days i suffer more so I try be as active as possible, i stretch every morning and night, and I take multi vitimin tablets too, don’t get me wrong I still get quite a lot of pain and symptoms but I have 2 kids that keep me going x I hope you manage to get the help you need, i can imagine it’s frustrating knowing your having to take time off work xxxx