Joint Hypermobility, Hypermobility syndrome and EDS hypermobility- Who gets it and where from?

“Why me?” is a question I frequently ask when I’m nursing a shoulder or a hip that feels like it has just come back from war. Before I really knew about hypermobility syndrome and Ehlers-Danlos, I thought I was just spectacularly unlucky to have these bendy joints and stretchy party tricks. No one seemed to have heard of these conditions and doctors seemed to find a million other possibilities for the pain.  This actually made it feel worse in hindsight. Not knowing why you are in pain or where it has come from only seems to make everything feel more gloom and doom. The realisation that actually, this is more common than you might initially think and has most likely been passed on through genes at least brings some logic and understanding into play.

Abnormal collagen provides strong evidence that hypermobility, either in itself or in the form of the painful syndrome, can be inherited. In some families, members may be affected in different ways, often with people not knowing they were affected at all. In terms of passing it on to children, simply put, if only on parent is affected, then there is a 50/50 chance the child will be. However, hypermobility varies so much that there is no telling in which way children will be affected, if at all.

Inheriting joint hypermobility is not always the case, as it can be acquired by gymnasts and athletes through stretching and exercise.

Girls are affected more than boys. The reason for this is that female joints are more supple than men, particularly when younger. Women have a hormone called relaxin, which is responsible for the expansion of the pelvis during childbirth. The combination of mean the chance of having hypermobile joints is higher.

Recognising hypermobility in children is important, as there are exercises that encouraged and other things that are discouraged. See http://bend-trend-hms.blogspot.co.uk/2013/11/joint-hypermobility-in-children.html

People who have Down’s syndrome are often hypermobile, but this isn’t to say that there is a link between this and hypermobility syndrome. http://bend-trend-hms.blogspot.co.uk/2013/11/joint-hypermobility-in-children.html 

Ligaments are stretchy bands of tissue which hold bones together (in most cases). They are key to the movement of joints. They help to control the range of movement and are important for stability, allowing bones to move in proper alignment. Proteins make up the tissue in most ligaments, and these proteins are collagen. The collagen fibres tend to bind together as the body grows older, which can account for stiffness with old age. This means that hypermobility is more common in younger people and it is thought that the symptoms of the syndrome lessen with age. People who have hypermobile joints but not hypermobility syndrome are likely to find they become less flexible as they become older and can sometimes find stretching painful as they move into their 30s and 40s. Each case is very individual, so it is hard to predict exactly what will become of hypermobile joints in different people.

Ethnicity can also play a role. People of different ethnic backgrounds have different ranges of joint mobility. This can mean different structures of the collagen protein.

Ehlers-Danlos hypermobility type can be established by looking at family history as well as clinical examination.

Swedish massage for hypermobility syndrome and Ehlers-Danlos hypermobility type

I used to think it was only old people who complained that cold weather made their joints ache and seize up, but I stand corrected. Since the colder weather set it my joints have been extremely painful, to the point where I have been standing at my desk covered in heat patches and wearing as much deep heat as clothes. There isn't one clear and concise explanation behind the link between the cold and joint pain that I can find, but it seems to be a widespread thing, particularly in the hypermobile community. Apparently, air pressure is the culprit behind these wintry aches, causing knees, shoulders, backs and in my case lately, every single part of the body to hurt more.

When it gets colder and dreaded winter sets in, air pressure drops and there is less atmospheric pressure, this causes the soft tissue and ligaments that surround our joints to become inflamed as they expand. This swelling stimulates the many nerves that dwell within the tissue, leading to the pain. How very scientific.

There are countless articles online that target joint pain in winter offering hints and tips such as ‘dress up warm’ or ‘use heating to warm rooms.’ Ground breaking stuff. What would we do without the internet? In any case, I have been covering my shoulders with a monstrously big scarf as they have been so painful lately that even the sight of my work bag sends them into panic. Back pain has also come hurtling along with the cold weather, arriving just in time to enjoy some festive fun. Swimming has helped this a bit. Breastroke in particular seems to make my shoulders and back feel less tense, but overdoing it even a tiny bit can cause more pain. I felt better after about 10 lengths last Friday, so that is probably enough to start with.

Swedish massage

I have looked into massage with hypermobility syndrome a lot since being diagnosed. There doesn’t seem to be a clear answer as to which kind, if any, are the most suitable. It is obviously a very individual thing. Deep tissue or ‘sports’ massage has a lot of mixed reviews on forums for hypermobility syndrome, with a lot of people experiencing even more pain afterwards. I was recommended to stay away from this by one of my physiotherapists as she said too much stimulation can simply move areas of pain around rather than easing pressure and helping pain to subside.

 Swedish massage, from the holistic family, is a gentle form of massage often performed by beauty therapists. I am lucky enough to have beauty therapist trained in massage as one of my best friends, so I decided it was time to indulge. My back pain has been the worst ever the last few weeks, the knots around my shoulders and in my lower back have felt huge. Deep heat and heat patches help to ease the pain for a while but after having them massaged and worked out, my shoulders feel almost brand new. (Well as new as hypermobile shoulders can feel.) It did hurt, especially down the middle of my back and underneath my right shoulder, which is where the worst of my pain has always been. The crunching and clicking was quite special and I did begin to worry that it would do more harm than good, but I cannot recommend enough. My hypermobility issues mainly reside in my shoulders and hips and these areas both feel tons better since massage day. My shoulder has felt knot free and some light swimming the next day helped to make it feel steady. My hips have felt almost entirely pain free since. I was told that wearing shoes that absorb shock well, with a small heel, will help my hips in the long run too. The next day does come with a bruised feeling and you have to drink lots of water immediately after and make sure you keep active, but for me it has been worth it. Also on a completely unrelated note, it is lovely when you are nursing a slight hangover, as I found out. Swedish massage definitely gets a place on my pain-easing list.