Joint hypermobility syndrome and mobility

[IrritableBitchSyndrome]

I'm only 41, but my knees sublux so frequently now I find it hard to get out of the house. I have an almost 3 y o DD who I'm scared to walk to pre-school in case I end up a crumpled heap half way and she walks away and I can't go after her. Is it stupid/ott to think of getting a wheelchair? I just keep thinking it will get better with physio, orthotics etc, but I'm almost housebound at the moment. Any advice?

I'm banned from anything high impact because of the state of my feet (beyond redemption, according to the podiatrist I saw!). Thankfully, when DS2 wants to run to school, I can keep up the pace with an unbouncy walking jog. I know a few people who do power walking. Looks ridiculous, but provides some good aerobic exercise, which is hard to get.

I'll find today's snow harder going, once it gets deep. I've bought a walking pole which I'll probably make use of, if it doesn't hurt my hands too much, holding onto it.

Ooh... another really useful article. Thanks Clarella! I will read it thoroughly.

Ouryve - my last podiatry consultation was a bit bizarre - two podiatrists bent me around and shouted terms and numbers to each other, often while laughing and saying 'oh dear! Look at that!' Or, 'I could have guessed that because of (something) being (number)!' told me my feet were as wrong as wrong could be, altered my orthotics a bit and packed me off again. They said my knees were the most functional part of my lower half. Which is weird and not at all intuitive! They felt zero need to explain anything to me. It felt like being an animal at the vets. V strange!

Ouryve - my slippy snow tip is: if you feel yourself slipping, go with it and try to land flat on your back for minimal damage. You will look ridiculous (according to my delightful kids), but it's worth it.

I also ignored the no breastfeeding advice!

I think it is funny that people think that putting your hands on the floor as a sign of hypermobility. I put my hands on the floor and bend my elbows significantly (as in over half way to fully bent), I can also almost put my toes on the floor whilst my calves are still touching the floor if I point my toes. I should have done ballet but that is shocking for damaging the body so glad I didn't

I wonder if that is the book that my physio has picked up.

I have nerve issues to compound the joint issues. My favourite one was a doctor whose only helpful advice was to suggest taking me outside to shoot me as it would be the only sensible suggestion

I am glad to have discovered a batch of podcasts as currently bed bound again and buried under several ice packs and multiple hot water bottles. I am soooo bored of the pain and non functioning joints being so limiting.

YesEinstein - Sorry you're bedbound again. We're so lucky we're not racehorses!

Hello all

Eds3 here. Not well at the mo (unrelated) and my posts can be a bit garbled so i'll keep this to a short hello for now. Not being rude! :)

Hi everyone. I was diagnosed with hms 3 years ago by a muscular - skeletal specialist. Most of my problems are with my pelvis and hips although last year I developed a subluxating kneecap. I had prolotherapy in my pelvis which helped massively and I got a private physio. I spent 14 months in a wheelchair and I hated it, but it got me out the house. I also struggle with crutches due to wrist and elbow pain.
These days I see my physio once a month, do physio led pilates once a week, use hot water bottles and daily stretching as part of pain management, do strengthening exercises every day, and take pain relief as and when, ranging from ibuprofen/paracetamol up to 30mg codeine.
My hormones have a massive impact on my flare ups and coming off the combined pill was the cause of my subluxating kneecap (according to an orthopaedic surgeon).

Hi BeyondCBA, sorry you're ill.

Simplydivine05 - my symptoms are much worse in the last 10 days of my cycle - always get flare ups. It makes it all too easy to end up in an injury spiral, as sometimes it takes a few weeks for my knee to improve, then the end of the month approaches and I re-injure it.

Irritable - I know exactly what you mean, just as you think you're getting better you dip again. I've improved massively with the right care. I cannot rate a good physio highly enough but unfortunately I have to pay. I had 4 NHS physios and none of them knew what they were doing. The doctor who did prolotherapy was also private but worked half a day a week seeing NHS patients. I also tried hydrotherapy, acupuncture and osteo but they didn't help at all. Mostly because they didn't deal with the root cause. If you can get referred for prolotherapy I would highly recommend it, but there aren't many doctors that do it. It tightens your ligaments up and reduces the mobility of them.

Simplydivine05 - thanks, I'll keep prolotherapy in mind. The idea of having irritants injected into my joints does freak me out a little though!

Reading with interest as I think I and the DCs may have JHS. Certainly was suggested as a possibility by a physio I saw recently and would explain a few things.

BestisWest - I think it's massively underdiagnosed and actually quite common. Clarella posted some excellent links upthread. Well worth a read.

Well, I embraced the fear and have been using my walking pole. It's made a world of difference and I've found it particularly useful for gauging whether what I'm about to step on is soft or hard, do I know whether to avoid it and which way to brace myself if I can't.

My lower back locked up to sterday lunchtime so I threw a cocktail of cocodamol and naproxen at it and forced myself to resist sitting down too much. I'm on a bus to a snow and ice free town centre, today so I can have a proper stride without constant bracing.