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?

No I don't think it would be stupid or over the top to think about getting a wheel chair.

I have problems with my knees too. I had years of NHS physios and consultants who could not deal with it. I was lucky and encountered a sports physio who strapped my knees and gave me loads of exercises to strenghten the knee. It is way more stable as a general rule but I will still get dumped on my ass when I got to put my weight on it and the knee cap has moved. However I have problems with my ankle joints and there has been nothing found that stabilises these joints. So I do hope that you can find something to help you.

Being housebound can be totally demoralising so having the safety net of the wheel chair will give you greater freedom and would help emotionally/moral too. Also consider a mobility scooter if your wrists/arms/shoulders are affected.

Depending on where you are there can be several options for the wheel chair if you are not entired to a voucher. I know there are some organisations which do reconditioned chairs (incl maintence).

But if you are not sure and are in the UK the red cross offers a wheel chair loan scheme so you could borrow a chair for a short while to see if it would be the right option for you. Some depots might be able to arrange pick up and drop off although i think there might be a fee for this aspect (loan is donation based) It would be a good way to gather enough information to make a proper decision as it is hard to properly advise as I don't know which joints are problematic for you and might affect usage, and any other contributory factors.

HTH

Wow! What an exceptionally helpful reply! Thank you so much for that information. I was wondering where on earth to start, and a loan scheme would be ideal. Thank you

Glad to have been able to help. Hypermobility can be miserable when it is playing up.

Also self propelling is the wheel chair that you push yourself with the big wheels and a transit is one which has little wheels but someone has to push you in it, as they will ask which you will need.

Hi again, yes, thank you for helping with terminology. I'm using my stuck-in-bed time to investigate different types of wheelchair and scooter today. I think something powered might be the way to go, as my shoulders and wrists are very hypermobile and prone to pain. I tend to pull shoulder muscles while using crutches! Something I could sit in with wriggly toddler on my lap to get her to preschool would be good. I've looked at the Red Cross, they do offer a loan of equipment local to me, but I think are limited to the self propelling or transit wheelchairs, understandably. I will look into mobility scooter rental, perhaps. It would be great to have the confidence to go out more, although I worry about being too dependent on something like that, and ending up relying on it even when I don't need to. It's just such an unpredictable condition. just a couple of months ago I was enjoying walking about at speed with the pushchair, as though there was nothing wrong at all. Today I'm entirely bed-bound as my knee is too damaged to put weight through it at all, after a couple of months of really frequent knee subluxations and instability. I can't even pinpoint what I did wrong to cause this to happen again. Yesterdays injury was while walking across my kitchen preparing a meal, not skiing, for example! Where it used to take a rotational injury to damage me, now it's just walking about or swinging my leg under a table to sit down... Is this an inevitable decline after years of repeated damage, or just a bad patch which will soon heal up to be followed by a return to full mobility for years to come? Should I do everything I can to rest my dodgy joints and protect them from further damage, or be taking every opportunity to strengthen the muscles around them? How much of my life should I waste sitting about waiting to be better, rather than getting equipment to work around the condition? All rhetorical questions, I'm afraid!

It is part of the condition though. I can wake up with joints that are out of place. Unless someone has beaten me up in my sleep unlikely when i only get 3-4hrs if that sometimes then goodness knows what is causing it.
The exercise or rest thing is a big problem. I am supposed to rest my ankle and exercise for my knees. yep so in practice? but i am lucky because i have a very good physio who is not adverse to doing some digging and research so they can best advise. I was told to use it or lose it, but rest when you need. which is as clear as mud. Unfortunately I don't there is such a thing as a clear answer as it is such a variable condition that advice given one day may well be different the next.

Hopefully you can get some quality and enjoyment without worry of life back soon

Just a thought: Some shopmobility schemes offer electric wheel chairs as well as scooters for rental/loan (scheme dependant) might be worth investigating as you might be able to try and see if you can manage them, especially as the different scooters work/feel slightly different.

Ooh yes. Shopmobility! Could be fun on a good knee day! Maybe they would let me test drive! We should set up some sort of JHS support thread! The exercise for knees and rest ankles sounds like a real pain. Sigh! Do you use a scooter or wheelchair?

Nope but I own enough bandages I could turn two people (at least) into egyptian style mummies if i wanted to
I have a good physio and historically my joints are responsive to stabilisation through targeted physio and exercises (6hrs plus during a really bad spell). Unfortunately this has changed and I am waiting to get the situation double checked (there have been a couple of tumbles down stairs/walked into door frames etc) to make sure things that are a problem are down to the existing condition and not because actually I have done other damage

I have EDS (like hypermobility syndrome but it also affects the rest of my organs). I use an electric wheelchair as my knees like to give way underneath me and my hips dislocate. I can't am not allowed to use a manual as my shoulders dislocate too badly and so my physio banned me. I can only walk about 15 meters without my chair. It sucks, but is just part of the condition. Use whatever equipment you can to make your life as easy as possible. Using a chair is better than being housebound and a stick as it's better than being bedbound. Do you get PIP?

Unweavedrainbow - hi! I think jhs is the same as eds hypermobility type? I have lots of fatigue/dysautomnia/ibs/etc issues as well as the joint stuff too. What is PIP?

YesEinsteinsMumDid - do you mean 6 hours of constant exercise? What do you do with the bandages? I am feeling very green and uninformed today!

Unweavedrainbow - have googled PIP. Interesting. Is it difficult to claim for a condition which affects you differently day by day? Is it something that only gets agreed if your health deteriorates to the point where there are no more good days?

I have 30mins of physio for my knee to do 3x day, 30mins for my back and hips 3-5times per day, 15mins of ankle stuff to do 2-4 times per day it all add up but none of it is impact and it is all spaced out with rest. On a good day it is 2x of each set of exercises

PIP-personal independant payment. If you are reciept of high level pip you might be entitled to funded element of mobility but is all messy and I would advise speaking to a specialist adviser (eg Cab/ and some other charity organisations) if you are not already. It is replacing DLA and mobility.

No you can still have good days and require PIP. It is worth looking into.

EDS and hypermobilty is not the same thing I have hypermobility and Fibromyalgia but not EDS. They have similar aspects of problems though

Sorry concentration is non existant tonight until the pain killer kick in.

I can't use NSAIDs so I use witch hazel compresses to help reduce swelling in joints. I have multiple so that I can stick them through the wash as needed. I also use them to support joints when I HAVE to do stuff on a day when it is not so great. I also have some kinesio tape for supporting joints and this is done to support in the building up of muscle strength to stabilise the joint. BUT I would recommend you take the advice of a physio before using kinesio as it is possible to cause problems if you apply it wrong.

My rheumo said that hypermobility is what used to be known as "double-jointedness". A huge number of young women are hypermobile. Hypermobility can be either genetic (structural hypermobility, caused by a defect in the collagen) or hormonal (some hormones can cause ligaments to be stretchier). JHMS is hypermobility plus pain and be mild to severe. Some people with JHMS also have some stomach issues. EDS is hypermobility plus pain plus other issues. In EDS, the hypermobility is caused by a genetic defect that affects all the collagen in the body to varying degrees. This can be very severe. I have a provisional hypermobile EDS diagnosis, but as my EDS and that in my family is a bit weird, I will probably get classified as a different type. Just waiting for genetics.
As for PIP, you need to affected enough to meet the criteria (points) at least 50% of the time. It does really come in useful.

Most of my mum's side of the family have similar issues, so I'd be gobsmacked if my problems aren't genetic. I have stretchy fragile skin too, so pretty sure my collagen is not right! Ta for the tips, lots to think about!

Stretchy skin is a hallmark for classical EDS. Have you seen rheumo? That's one of the things they look for.

I saw a rheumotologist for about 4 minutes. He was only interested in joint hypermobility, said he only did joints not skin or other related conditions, handed me a leaflet, diagnosed jhs and sent me on my way. He said if I wanted anything further I needed to see a specialist centre. He looked v surprised when I said yes please!

Btw - have either of you come across this? :
www.ncbi.nlm.nih.gov/pmc/articles/PMC3011108/

Bit peed off my gp has had me taking ibuprofen for two days after reading this research :( I have most of the more effective and less dangerous listed alternatives in my kitchen too! Grr.

I tend to stick to heat, ice and witch hazel as my first level pain management and inflamation reduction method. I am considering a tens for the issues with my back to avoid meds which I have a high chance of having a reaction to. because my body seems to hate not only itself but modern medicine too Oh and epsom salt baths. I love epsom salt baths. soothing for muscles and good for making sure magnesium levels are ok. although I can't remember why that was important I know it was for the control of the combination of issues I have.

Hi may I join in?

Much of what you're describing is what I've been dealing with. Was dx JHMS last year though really my primary issue is hypothyroidism. I'm very skinny so I do seem to get weak easily if thyroid isn't bang on.

I too am finding Epsom salts brilliant.

I have seriously begun to wonder about a tens machine for flares as I am at a better level now.

Has anyone used one and found them effective? It's my lower back, kyphosis I think, joints lock up and muscles spasm. I know pelvic clocks and physio are the main solution but wondered if it helps actually strengthen the muscles?

By the way op I found taping my shoulders on the bank in a big cross (like a half buckle mei tai sling) very helpful when dealing with toddler and bad shoulders. Physio had to show me how. I found the really firm tape best when they were really bad, over the kinesio, simply for flare managing.

Clarella, hi! Glad to 'meet' another fellow sufferer. I'm afraid I don't have any experience of tens machines myself. I think studies showed they are no more effective than placebo, and they lost popularity, but I could well be mis-remembering. Hopefully someone better informed may come along and possibly set me straight on that.

I did pick up some physio tape. I keep meaning to ask my physio if she thinks it would help me, so thanks for the reminder. The shoulder idea, with an increasingly chuncky toddler, could be really good, thanks! I suppose a 'bonus' of being hypermobile is that we can reach every part of our own backs, at least...

I was just reading that low selenium levels lead to a prevalence of thyroid issues in the uk, in association with our low iodine and vitamin d levels compared to those eating north american wheat grown in selenium rich soil, eating iodized salt and missing less sunshine. Apparently we should all be taking 1000iu vitamin d between october and march, taking 50mcg selenium per day and taking potassium iodide at low doses to improve thyroid function. (Obviously your gp will have a view on this! This is from 'the health delusion' Goggins and Matten. It seems very well researched and gets good reviews from gps). I'm not big on supplements, but the evidence seems scarily compelling