Joint supports and braces are an important tool for managing Ehlers-Danlos Syndrome, particularly for me as I can do very little physiotherapy to strengthen the tendons and ligaments which support my joints naturally due to also having M.E. The joints in HEDS are hypermobile, meaning the surrounding tendons and ligaments, which stretch to let the joint move, are over-elastic and the joint is allowed to move in an extended way it’s not designed for. Supporting a joint with a splint or brace still allows the joint to move freely, but in a normal range of movement. This reduces the chance of ligament and tendon sprains, strains and tears and stops the joint from wobbling about in, or out, of its socket. If your medical team tell you that splints and braces are a bad idea as they weaken the muscle and therefore shouldn’t be used, find another person to treat you – they are vital to stop some joints from sub-luxing (partially dislocating) or in some cases fully dislocating, and are also needed when the joint is injured to help it heal.
HANDS & ARMS
My joint supports were originally provided by two separate departments, Occupational Therapy and Orthotics at my local hospital and it’s important to be properly assessed and measured by a trained professional, but as I’ll explain at the end of this post now I know what I need I tend to just buy my own.
My Occupational Therapist, Fiona Caven at the Cumberland Infirmary Carlisle, has been a treasure and incredibly helpful in trying to find ways to support my bendy hands and fingers. It took about 8 months to find a thumb splint which worked for me without setting off my Dermographism or rubbing my skin raw, but she thankfully persevered. I now have 3 thumb splints, depending on what I’m doing:
This is a custom-made full thumb cast and is the most supportive of all my thumb splints. I wear it when I need heavy duty support, such as gardening or lifting heavy objects. It’s not the prettiest splint in the world, but it really does do its job.
This is a Murphy silver ring splint, much coveted by people with HEDS. It looks like a fabulous piece of jewellery and is my splint of choice if I’m going out somewhere posh. However, it is also the most uncomfortable of my thumb splints, rubbing my skin raw and setting off my Dermographism. If you think about it, every time my thumb tries to over-extend it’s stopped by pressing against a rock hard piece of metal which, after a while, really does start to hurt. I can only wear this splint for a few hours before I’m itching like mad, have red wheals under the bars and am desperate to take it off!
This is an Oval8 plastic thumb splint, and is the splint I wear nearly all of the time. Not as pretty as the Murphy, but because of its colour most people don’t even notice I’m wearing it. It’s comfortable, doesn’t rub, and holds my joint in place really well. Saying all that, I’m still ready to take it off by about 4pm each day as by then it’s starting to itch.
I have Oval8 splints for virtually all of my fingers as well as my thumbs. After suffering constant pain for years, wearing finger and thumb splints for several months allowed my joints to heal and these days I only need them if I’m having a flare up.
My hands in general can often feel tired, sore and over-worked and, when I was first diagnosed at Manchester Infirmary, the hypermobility OT there gave me some Isotoner compression gloves that gently support my hand ligaments. Ideally, I could do with a size smaller, as I have child-sized hands and even the Small size is too big for me, but I do like the support they offer my whole hand, even if they’re pretty goddamn ugly!
Every few weeks my wrists decide to hurt, usually if I’ve spent too long typing on my laptop or doing something which involves twisting my wrist joint, eg. crocheting (I crochet small garments for AIDS orphans in Africa). So for a few days I’ll wear a wrist support just to give my tendons and ligaments a break.
This particular brace, provided by the Orthotics department at my local hospital, has a removable metal bar which can be inserted into the brace for added support and stabilzation but I find it then makes daily tasks impossible because it doesn’t allow for any bending movement in the wrist so I never use it. Because this splint is worn next to my skin it itches me like mad, so I bought a thick pair of footless tights, cut the ends off, and wear these under the brace. It doesn’t stop the itching entirely but it at least makes it wearable. You can buy these supports on Amazon here.
My elbows are severely hypermobile and I’m desperate to find some supports that I can tolerate but unfortunately every one I’ve tried sets off my Dermographism. The thing about elbows is that they need to bend inwards, and none of the supports made seem to take this into account. Consequently, within an hour of wearing one I feel like the circulation to my hands has been cut off, and I have huge itchy wheals where I’ve bent my elbow and the support has dug into my flesh.
FEET & LEGS
I have very high foot arches but these collapse and cause flat feet when I stand or walk, which causes my ankles to roll in, which causes me to have ‘knock knees’ and which causes havoc in my pelvis and lower spine. My first referral was to Podiatry, who gave me some basic insoles and while these were OK I knew I could do better. I was next referred to Orthotics, who did a foam cast of my foot and made me some custom insoles which you would think would be brilliant but caused me foot pain so bad I couldn’t walk 😦 So I started on a three year quest for the right insoles for me, eventually settling on Solford insoles developed by Salford University (you can also buy these on Amazon). I have the firm blue insoles for my floppy wellies (gumboots) and the flex orange insoles for my ankle boots and shoes. I also have the heel wedges which stick on the underside of the insoles. They really suit my feet and are so comfortable I never know they are in my shoes. They also last really well which is important as they’re not exactly cheap. Initially, wearing insoles made my knees and hips ache as they were forced into normal positions they’d never been in my whole life but it didn’t take long to get used to them and they’ve helped my ankle and knee pain enormously.
Being as though my ankles don’t roll as much now I use good insoles I only occasionally need extra ankle support and have opted for Wellgate slimfit elasticated supports because they still enable me to wear my regular boots and shoes and are specifically designed to fit women. They wouldn’t do if I had a serious ankle injury but for light support I like them, and they fit me well even though I only have tiny size 3 feet.
My knees still give me a good deal of gyp so I do regularly need some sturdy knee braces, particularly when I’m walking the dog. I’m not going to lie, firm knee braces aren’t the most comfortable things in the world but of ones I’ve tried I like Boots own brand advanced adjustable supports the best. Despite only being tiny I can adjust them as tight as I like and they do stop up even when exercising. I wear them over the top of my jeans or pyjs and find that because they’re not next to my skin they don’t itch too badly. If you don’t get the placement exactly right, though, they can dig in behind your knees so I have to make sure I have them well up above my knee joint.
Like many people with HEDS, the worst of my hypermobile joints are in my spine. I also have an exaggerated mid-back curve, called Lumbar hyperlordosis, which further strains the ligaments, muscles and tendons which support my spine. Consequently I have had serious back pain for 40 years.
Having torn the ligaments around my SI joint (the triangle shaped bone at the base of the spine) I now wear a Serola SI belt whenever I walk anywhere. It’s really comfortable and I don’t even know I’m wearing it. It doesn’t limit movement in any way, just helps support the SI joint. If I don’t tighten the side supports I can wear it all day long, and do if I’m having a bad pain flare. The only downside is the faff of having to take it off and on when I need the loo!
To support my mid back I bought an Oppo lumbar support myself online, though Orthotics do provide them on the NHS. It provides good support and stabilization, but anyone who says wearing a back support is fun is lying! It’s uncomfortable when you’re sitting, feels like it’s cutting off the circulation to my stomach and I defy anyone to eat wearing this torture device. Consequently I only ever wear it when I’m desperate.
In summary, while splints and braces are necessary to support joints and prevent injury they are not an easy option and are best provided, and fitted, by a professional who can offer alternatives for supports that are unsuitable, and adjust splints and braces so that they are as comfortable as possible given their limitations. Having said all that, you only get one of anything on the NHS and for things like insoles, where I have wellies, ankle boots, trainers, slippers and shoes, you realistically need several pairs or you’ll spend half your life swapping them around. Braces worn next to your skin, like wrist supports, get sweaty and need to be washed often or they genuinely pong, so again you need at least 2 pairs for wash and wear. Consequently, I gave up with the NHS once I’d been measured and fitted and now buy my braces myself online, mostly from Amazon. If you have mast cell issues you may find braces make your skin itch or set off pressure induced dermographism, which can be problem bearing in mind they have to be tight or they’re no use! Wearing them over the top of clothing can help.