Attention seeking syndrome

    Last night I had a very traumatic episode with some deep heat. By traumatic, I mean I had to have a second shower and lay with a wet towel on my back for about ten minutes while my skin recoiled and came out in lumps. Who knew deep heat was so hot? My back has been aching relentlessly for about two weeks now.  If back ache could be charged rent, I would be quids in. While inspecting my back for any lasting damage this morning  and vowing to stay away from deep heat (it’s fine, you’ll be relieved to know) I began to think about the amount of time hypermobility syndrome takes up in my life, even if it’s just thinking about aching, or shifting my bag from one shoulder to the other. It’s an attention seeker, that’s for sure.

Sufferers of HMS or EDS hypermobility type will know just how irritating and time consuming it can be. It gets in the way a lot. It hurts a lot. It makes a lot of clicky, cracky sounds. Basically, yuck. One of my more trivial Hypermobility syndrome issues is Bestival. A festival on the Isle of Wight every September that I absolutely love. I started going when I was a student and attended my fourth this year. It sadly reached the stage this time around where lugging a massive rucksack, tent, a bag for life full of alcohol and lots of glitter was inconceivable. My shoulders and my hips were not going to deal with it, and that was that. Luckily for me I have amazing friends who offered to drive me around and helped carry my mound of belongings. Of course it doesn’t end there. Lots of standing and walking around, getting over excited at the sight of people in fancy dress and aggressive dancing to Disclosure and Chic left my joints in a state of emergency. One of my favourite times of every year is now very hard to enjoy and I think I’ll have to take a career break from Bestival. Cheers HMS.  Funnily enough Bestival was called HMS Bestival this year, with a nautical theme. Go figure.

Even going on holiday is a literal pain. Suitcase pulling and being squashed on a plane make me ache and feel stiff and sore and ultimately grumpy. Of course I still go on them, but the point is IT HURTS. Some people suffer to the point where they are very disabled by these syndromes, so I count my lucky stars I am able to still do most things. I worry about getting old and how my joints will cope when I’m 63, seeing as they aren’t too fond of being 23. Peeling potatoes proved too hard a few weeks ago and washing my hair is starting to become a time where my wrists and shoulders click and crack like some kind of unhappy joint choir. Who needs an in-shower radio anyway? The prospect of an exciting weekend now is one where I hopefully don’t ache too much. Living life on the edge, hypermobile style.

One thing I have taken from hypermobility syndrome is that living in a state of woe is me is not helpful. I still moan and complain that I ache and have excessively long, hot showers, but I have had to snap out of feeling constantly sorry for myself. There are people who have it worse than me, a lot more people than I first imagined and even more so since I started this blog.

I plan on attending one of the Hypermobility Syndrome Association meet-ups soon, to discuss, moan and hopefully come through laughing in a group. A fair few people I have spoken with by email or on Twitter are completely unaware that these happen. A lot of people seem to be slightly lost or confused about symptoms too, so these meetings will probably be hugely beneficial if this applies to you. Click below (oh the irony)

http://hypermobility.org/events/ 

Joint hypermobility in children- noticing hypermobile joints

The first time I ever drew attention to my joints was at a barbecue when I was nine. I was leaning on one arm laying on the grass, when a family friend who was medically trained asked if I had problems with the way that my arms bend. I had never noticed or been asked before, but from then on I began to realise that my joints did things other people couldn’t do. My hands can turn all the way around when on a flat surface, and my arms look almost backwards when I straighten them, as shown below. My right arm and shoulder was the first joint to become painful and remains the most problematic. It is very loose and causes aches and clicks and general pain most days. I struggle to carry things and have trouble sitting at my desk at work to type. When I went to physio they asked me to think back to being a child, to work out how long the pains had really been happening. I did recall having pains in my shoulders a lot when I first went to high school. These were dismissed as growing pains and I never made a connection to my joints, as I had no idea hypermobility was a thing. 

My hips are becoming more problematic lately. My legs are very flexible and I can place my feet on the back of my neck with ease. My thumbs are also hypermobile, bending right back around onto the back of my hand, as shown:

Despite these examples of bendy joints and being very obviously flexible, my hypermobility was never picked up on. I took part in PE lessons, went to school and played like normal, enjoyed being active and was never held back by joint pain. The only sign of what was to come was the way my joints could bend and move. Not all hypermobile children will go on to suffer with the symptoms of the syndrome. It is possible to live with no pain or problems when you are hypermobile, but keeping active and fit is still important. I think had I known when I was younger, I could have looked into physio and taken fitness more seriously, as it is so important to strengthen muscles around loose and hypermobile joints. Watching the way children sit and stand can indicate how flexible they are, particularly as they grow older. This link from the American college of rheumatology is another good source of help for paediatric hypermobility. The links for finding doctors are for the USA, but the other information applies to everyone.

http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Hypermobility_(Pediatric)/

Children who have hypermobile joints and are able to exercise and be active without issues should be encouraged to do so. I did a lot of physical activity as a child in way of swimming and ballet and didn't experience pains. However as I got older, I became less interested in exercise, especially at university, when exercise was replaced by pub crawls and lots of mid-week dancing! I am now very aware that my muscles need to strengthen to help support my joints and wish I had kept up swimming or tried harder to get fit when I was younger. My parents were as clueless about hypermobility as me, but if you have an inkling this applies to your child, get it checked. Keeping fit will help no end, as long as they are able and (sort of) willing.

Hypermobility syndrome- Media Awareness

Snap, crackle and pop should definitely belong to hypermobility syndrome rather than Rice Crispies. My shoulders have been embracing the cereal phrase the last few days with a nice sprinkling of pain. The last three days have been hard on my joints. My hip has been painful and jarring and my shoulders and wrists have been clicking like crazy and aching a lot from work.

As annoying and tiresome as all this is, I am finding it comforting to see more and more press and media attention going to HMS. I have received a lot of messages from people who share frustration, pains, symptoms and worries, so it’s nice to see that awareness is happening:

The BBC Radio One Teen Awards took place on November 3^rd and a number of teen heroes were acknowledged. One of these extremely deserving teenagers is  a young man named Alexander, who suffers from HMS. On top of his condition he also cares for his mother and has dealt with physical and mental bullying.

http://www.bbc.co.uk/programmes/p01dr0hm/profiles/teen-heroes

An article in The Metro on November 5^th discusses a sport that’s taking off in the UK and across the US- roller derby. One of the women interviewed for the article, Emmeline May, saw the sport as a ‘revelation’ despite having HMS.

http://metro.co.uk/2013/11/05/roller-derby-the-full-contact-sport-for-red-blooded-women-4173065/ 

I stumbled upon an article on Yahoo! Lifestyle on Saturday, written by Kash Salem about her everyday life living with HMS/EDS which I really liked. It’s helpful as well as being very easy to relate to

http://uk.lifestyle.yahoo.com/live-hypermobility-syndrome-181500075.html

One more, from June this year, is an article on the Huff Post UK Lifestyle section, written by Rebecca Allen called 'Living with hypermobility syndrome'. I’ve seen this being shared around on Twitter a lot and it is a good read.

http://www.huffingtonpost.co.uk/rebecca-allen/living-with-hypermobility-syndrome_b_3379363.html 

Four examples may not seem like many, but it goes to show that there are people out there getting the message of sufferers across.  A quick search for 'hypermobile' or 'hypermobility' on Twitter will return some results of celebrities sharing woes about their joints. Writer Caitlin Moran quite often brings it up on her feed in general chit chat. There can be never be enough awareness, so let's hope these examples begin to multiply and media attention builds for hypermobility syndrome.

Ehlers-Danlos Syndrome: Confusion, types and differences

If you stopped a person in the street and asked them if they knew what Ehlers-Danlos Syndrome was (not recommended) the chances of them saying yes are probably slim. It’s more likely they will tell you to go away or just blankly shake their head and walk on. EDS is confusing, especially for those who are suffering from associated problems and haven’t had a proper diagnosis. There are a lot of questions fired about online from people who are unsure if they have Hypermobility Syndrome or EDS, or if their other symptoms and problems could be EDS or be completely unrelated. It’s a confusing sea to swim through.

THE BASICS:

-EDS is an inherited group of conditions known as connective tissue disorders.

-It affects the collagen proteins in the body that act as a glue in the tendons, ligaments, skin, bone, cartilage, blood vessels, gut and spine.

-It is caused by genes with alterations. These alterations make the collagen weaker and sometimes reduce the amount in the body. These genes are faulty and can be inherited.

Some features from the different forms can cross over in certain people but separated they are:

Classical: Stretchy, soft and fragile skins that seems elastic and joints that are hypermobile and loose with extra flexibility.

Hypermobility: Joints are flexible and can cause pain, especially after physical activity. The skin in this case is basically normal but sufferers will bruise easily.

Vascular: The most severe form of EDS. Organs and blood vessels can burst.

Arthrochalasia: Joints can dislocate very easily, skin is soft and fragile and it can cause short stature.

Kyphoscoliotic: In childhood the spine is severely curved.

Periodontal: The same features as classical, but gums can also be fragile.

Dermatospraxis- This type of EDS is exceptionally rare and it is thought fewer than five people in the UK suffer from it. The skin is the affected organ, appearing wrinkly and doughy and will tend to sag.

Hypermobility syndrome and hypermobility type EDS are so alike in their features that they are often classed as the same by doctors and patients receive the same treatment. It is easy to become confused with terminology as professionals may use both terms interchangeably due to their similarities. There is no genetic test that can separate the two and give a confident diagnosis of one or other. This confusion can be frustrating and cause a lot of cases of brain ache and general head fuzziness, but things are slowly become clearer and more widely known in the medical community. It’s a good idea to take some time to do detailed research and tackle it calmly, or with a glass of wine/slab of chocolate, if that’s your thing. More detailed information on the differences is available on the Hypermobility Syndrome Association website at this link:

http://hypermobility.org/help-advice/hypermobility-syndromes/jhs-or-eds/

Science and no more silence for Hypermobility sufferers

Getting diagnosed with hypermobility Syndrome is difficult. Chances are there will be a whole of lot of ouch, worry, sleepless nights, sleepy days, frustration and then more ouch before you get anywhere. Hopefully this will change in the future as it becomes better known to doctors and they can give answers rather than empty, blank stares and head scratches. Constant joint pain, aches, clicking, stiffness, tiredness, feeling like you can’t move because in fact, you can move too much- Hypermobility. Six syllables of BLERGH.

Before I was finally diagnosed I had been treated for so many things that I started to wonder if maybe there was nothing wrong at all and my joints were simply destined to hurt forever more. Now, after lots of research and speaking to others in the same boat, I know lots about hypermobility and where it stems from.

I am no scientist, BUT, here is a breakdown of what I have learnt:

Hypermobility is generally hereditary, although I can find no link in my family, most people will be able to. One of the key reasons a person is hypermobile is thought to be down to a protein called collagen. Collagen is most famous for making lips look pouty these days and when typed into Google, you get presented with a lovely collection of famous pouts. Amusing, but not helpful in this case. Collagen is actually found throughout the body, mostly chilling out in skin and ligaments. When collagen is weaker than it should be, the tissue in the body is fragile. This fragility means that joints can be very flexible and feel loose and extend further than what is normal for most people.

Some people can sail through life with hypermobile joints and experience no real problems or symptoms. However, when there is pain in the joints, dislocation, soft tissue injuries or joints moving out of the correct position, the problem becomes a syndrome.

There is a way of measuring how hypermobile you are using a scale called the Beighton Score. More information on this can be found on the Hypermobility Syndrome Association website: 

http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/

Many cases of hypermobility Syndrome go undiagnosed and cause people to live everyday with terrible pain and discomfort. If you are experiencing symptoms like the ones above and feel you are getting nowhere near to a diagnosis or help, don't be afraid to tell a doctor about HMS. In my experience, the majority don't know what it is until you get to specialist level. There is nothing wrong with helping doctors to help you. More and more things are happening to promote and highlight the problem. The above website is a good place to start. It is definitely time to stop suffering in silence.  

Swimming with Hypermobility

Having hypermobility means having muscles that are too flexible as opposed to too tight, which means exercise choice is really important. As much as I try to kid myself that walking up the escalators at tube stations is a substitute for the gym, in reality exercise needs to happen regularly. The best exercises for hypermobility sufferers are those that strengthen the muscles. This doesn’t mean you need to start inhaling spinach and channelling Pop-Eye, it just means try to avoid increasing flexibility.

People who are referred to physio will receive a tension band in a shocking shade of yellow or red, which for some reason always smell absolutely vile. They should really make them smell divine or come up with a way of making money fall out of them to increase usage, but until then, keep them away from your nose. While the band exercises helped my shoulder a bit, no amount of stretching or wall leaning or thrusting (horrible, horrible word) ever helped my hip.

Against the odds, one of my best friends who I also live with suffers with hypermobility too. She took up swimming about 6 months ago and eventually I jumped on board too. Front crawl I can’t do well because it hurts my shoulder a lot, backstroke I can’t do because I’m terrified of hitting the wall or another person (and it hurts), so breaststroke became the one. Starting gently, even if it means only staying in the water for fifteen minutes, is definitely the right way to go about things. After three trips my hip felt like I had actually done it some good. It usually clicks with practically every step I take, but this definitely lessened post-swimming. It’s also nice gentle exercise for my shoulders and they didn’t hurt any more than usual after. My friend has been advised to invest in a float to lean on to work on her legs more, so we are both going to try this next, much to the delight of the Olympic swimmers who insist on getting in the slow lane at our local pool.

The last time we went swimming we swam for 35 minutes straight, which was the most I have done since my problems started. The next time I go I will aim for this, but no longer. Hypermobility really is about patience.  It took some working up to and apart from two daring lengths of terrifying backstroke, it was all breaststroke. Nice and calm and gentle and resulting in eating a dinner that would feed a family of five. Hungry work, swimming.

So what's wrong with you?

The most interesting thing that happened yesterday was being on a train with a mexican drinking a WKD and a zombie rabbit giggling at something in The Metro. Apart from Halloween and some dough worshipping at Pizza Express, yesterday was mainly full of back and shoulder ache. My constant dull shoulder pain has returned lately and seems to be getting worse as it gets colder. My bag hurts it, opening doors hurts it, lifting the kettle to make cup of tea number 234342 hurts it. Hurt hurt hurt. I complained to my colleague about it who turned and said "you moan about aching a lot. So what's wrong with you?" This was followed by me telling her and her staring blankly at me and saying "maybe you need a massage?" IF ONLY LOVELY FRIEND. If only. (Though I still intend on getting one because why the hell not? I like being rubbed)

I find having to explain to blank faces about my aches and pains maybe the most frustrating part of Hypermobility Syndrome. I was recently in hospital with a nasty recurrent bladder infection and only one doctor had heard of HMS, and actually, to my astonishment, acknowledged that there could be a link. I'm still patiently waiting on this to amount to anything, but at least he knew what I was talking about. I found this yesterday when I was looking for a good detailed description of HMS for a work project.

https://www.pruprotect.co.uk/adviser/disease/hypermobility_syndrome/

I think it sums things up nicely and I have actually printed it to take along to my new GP next time I go, as he was very much in the dark when I told him about my woes.

I am also about to get stuck into this book by Isobel Knight:

I began to read it earlier this year but I was struggling a lot at the time and was in a 'please don't tell me more' mindset. I am now in a 'please tell me absolutely everything' mindset as I am sick to death of finding shampooing my hair painful and would really like to be able to do a breathtaking morning stretch without feeling like my shoulders are going to fall off or have recently caught fire, so here we go.