Joint supports and braces are another 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. 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.
My joint supports are provided by two separate departments, Occupational Therapy and Orthotics at my local hospital. My Occupational Therapist, Fiona Caven at the Cumberland Infirmary Carlisle, is a treasure and has been 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.
My thumb joint is one of my most flexible and until I started wearing a splint was constantly sprained and gave me pain every second of the day. I’ve now been wearing a splint for several months and can happily report that I have no pain whatsoever 🙂 Unfortunately, though, four of the DIP joints on my fingers are now needing support. However you can thankfully use Murphy or Oval8 splints for any finger and both are available on the NHS, though you will need a proper assessment, to be measured and the splint adjusted to fit.
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. I tend to use the metal bar when I’m doing a job which involves lifting but doesn’t require rotation of the wrist, like the ironing, Due to my Dermographism and delicate skin in general, I wear this brace over the top of a long sleeved t-shirt whenever possible, otherwise like everything else it just makes me itch. I haven’t used it yet in summer, so not sure what I’ll do when wearing short sleeves. I’ve heard placing a cut up tight underneath can help with skin irritation, so I’ll just have to give that a go!
My elbows are severely hypermobile, and I’m desperate to find some supports that I can tolerate. Sadly, every one I’ve tried sets off my Dermographism to such an extend they are rendered unwearable. 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. My elbows have been painful for several years, and I really do need some supports otherwise I’m going to risk ever-increasing joint instability and possible dislocation, but as yet a support which allows for inward movement simply doesn’t seem to exist.
My high foot arches, which collapse and cause flat feet when I stand or walk, were addressed by my local Podiatry department, though Orthotics can also provide foot supports. I was given some arch supports to wear in my shoes which are higher on the inside, therefore maintaining the foot in its proper position. First I had a detailed examination of my feet and ankles, then I was measured for the supports which were cut to size. Initially, wearing them 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, they’ve helped enormously and I’m now not nearly so ‘knock kneed’. However, you are only given 1 pair on the NHS and have to pay £15 for each subsequent pair. I could really do with several: one for my slippers, one for my wellies, one for my normal shoes and one for my trainers!
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 35 years. I have 2 supports for my back, but if I’m honest neither of them are much use.
I bought a Serola Sacroiliac (or SI) belt myself online, though they are given out by Orthotics and Physiotherapists. They support the sacrum, SI joint and pelvis, an area which causes me the most pain of any part of my body. The belt is comfortable enough to wear all day, though I personally find it can actually irritate my nerves, almost like the support is pinching something it shouldn’t. There are, therefore, days I can wear this belt, and days I can’t as it’s just too uncomfortable. I’m not sure whether it helps much to be honest, though I do use it when walking, simply because I know my pelvis and lower back is very flexible and unstable.
Again, I bought this Oppo mid-back support myself online, though Orthotics 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 driving for long periods, or going to be standing, which doesn’t happen much as standing is both painful and sets off my dysautonomia.
Back supports may be a necessary evil for people with HEDS, but I usually feel the negatives outweigh the positives. They’re uncomfortable, make eating difficult, have to be taken off and put back on again every time you go for a pee, and are generally more trouble than they’re worth :-(.
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.