5 problems hypermobile people encounter

1)      Being told “You don’t look unwell”

Probably the main problem with hypermobility syndrome is that unless you are in a sling, on crutches or in a wheelchair, you probably look like you are physically fine. Even when people mean well, being told you look fine when you feel the complete opposite is probably the most frustrating comment. It should be socially acceptable to shout ‘IT’S AN INVISIBLE ILLNESS’ directly at people who assess you entirely on how you look. Or just hold up a sign when the shouting gets old.

2)      Informing doctors what hypermobility syndrome is and that you aren’t imagining it

I've heard many stories and read accounts of lots of sufferer’s health care since starting this blog. A common grievance that comes up time and time again is that you have to continually explain to a string of doctors, sometimes even specialists, what your condition is. Those with Ehlers Danlos will often hear doctors say they've ‘heard of it’ but will then realise that’s where the knowledge ends. I've had this problem myself many times and have even had my GP giggle delightedly at my ‘backwards’ arm and tell me what a great party trick it is. Er, that’s wonderful, but please refer me to someone to stop the pain yeah? Someone who CAN ACTUALLY help please!

3)      Suddenly putting a join out and realising you need help

I was once walking home, in the cold and dark, from visiting family when my hip came out for the first time. I had no idea then that I had any sort of condition, let alone that I was hypermobile. I had to call my parents for help and explain I needed a lift home because I literally couldn't walk. The only thing that showed up on the x-ray was some swelling, which was never followed up. This happened again recently when I was at work in a busy diabetes clinic and had to stop in the middle of seeing a patient to say ‘You’ll have to excuse me, but my hip is out of place.’ It’s not ideal. It’s also quite hard to approach someone in public to help you as they will most likely look at you like you’re an alien and bemusedly lead to you to a bench.  It’s also always fun and games when you wake up having knocked something out of place in your sleep and explain to your friends while you are laying on the floor, then ask them to brush your hair for you.

4)      Doing everyday household tasks

An obvious one, but this is so unbelievably annoying. My shoulders are my worst behaved joints and on bad days basically all normal daily tasks become a massive pain (literally) in the neck. Hoovering? No. Changing the bed? No. Washing your hair? No. Peeling vegetables? No. Carrying anything that weighs more than about 5 pounds? Absolutely not. I recently spent a Saturday lying flat on the floor smelling profusely of Deep Heat and applying heat patches to my back while my friends made me tea and assured me it would ease off soon. All I needed to do was shower and get dressed. Out of the question. Oh life.

5)      How many painkillers have I taken?

More organised and efficient hypermobile sufferers will probably be much better with medications than me. As I often am lucky enough to go by without pain relief at the moment, when I do have a bad day I remember just how tough it really is. You basically become a walking-talking albeit very drowsy pill-popper. When I got my first big flare up I spent most days counting down the time until the next pain killer, then forgetting which I could take and trying to avoid sleeping on my desk, on the floor and on the stairs. Anywhere that looked a bit like I could lay really. 

On Hypermobility and Ehlers Danlos research…and what happens next

You don’t know me, but my name’s Dan. You probably know my girlfriend though: about yea high, brown hair, goes by ‘Lauren’, writes about hypermobility.

Anyway, I asked if she’d mind if I wrote a guest blog about medical research currently ongoing into the 24-hour party that is Ehlers Danlos Syndrome and about communication.

London’s Charring Cross Hospital is running a 16-week trial for patients suffering with anterior knee pain, while at the Hypermobility Clinic at University Hospital there is an ongoing genetic study run by, among others Professor Rodney Grahame.

Meanwhile at the Hospital of St. John and St. Elizabeth, the Hypermobility Unit is conducting a project on understanding the onset or triggering of symptom.

The other thing that’s almost as important as the research itself is how the results of that research are communicated afterwards. Fortunately, in the era of Facebook, Twitter, Google+, Whatsapp, linkedIn and the myriad other social networking platforms that seem to spring to life almost every day, the number of communication channels has never been higher.

 This is to say nothing of the hundreds of bloggers – just like the one reading this over my shoulder as I type (she knows how much that bugs me) – writing and sharing information, experiences, strategies and support.

Ehlers Danlos has affected my girlfriend’s life in a pretty profound way; mine too actually, ‘cause now I have to carry all the shopping. And in the early days it was made even harder because no one from GPs to A&E doctors seemed to know what the condition even was, much less how to mitigate and treat it. It was over a year before she was finally diagnosed with EDS, a painful and frustrating year that didn't need to be so much of either.

I don’t need to tell anyone who has EDS that it’s not a widely known condition. What happened to my girlfriend isn't an isolated case. Out there now are people suffering from they-don’t-know-what because even a lot of doctors aren't aware of it. Even worse than that, the Observer newspaper was saying the same thing almost 15 years ago.

That’s why effective communication is so vital, both for doctors and people who have the condition. So that in another 15 years, newspapers aren't still writing that “[EDS] remains largely a mystery and is frequently overlooked or dismissed by doctors.”

The world is a lot smaller now than it was, the internet has seen to that. Now doctors and researchers  access work completed thousands of miles away by people they've never met instantly. Because who’s to say that the results at the Hypermobility Clinic or at Charring Cross in London won’t spark an idea in someone in the United States, Japan or Australia, or anywhere else?

The tools are in place, they just have to be used.

Core Stability For Hypermobility

My first ever Core Stability class terrified and debilitated me. It was not ideal. I turned up really excited wearing lots of lycra, with my weird joints in tow and left feeling like I may just sleep in the park outside because it wasn't raining and the ten minute walk home was too much. However, this is just because I did a few things wrong. Number one: I didn't seek proper advice from the instructor despite him asking me if there was anything he should know about and if I needed help (“no I’m fine, I’m actually an Olympian.”) I told him about the hypermobility but should have actually asked specifically which weights I should go for and so on. Number 2: I picked up the lightest weight and put it down. Massive error. I needed to use that tiny weight. My weak arms and shoulders were not prepared for a real, hard work out and they most certainly let me know it.

I've been told so many times by physios and my GP and a rheumatologist that it’s important to have good core strength when you’re hypermobile. It’s basically the scripted sentence they all throw at you when you ask what you can do to help. For ages I did simple physio exercises at home but they didn't help much and my dog chewed through my thera-band. I don’t miss it. It was offensively yellow and smelt like sick and never did much to help my shoulders.

Thera-band fan

My housemate (also hypermobile) joined a gym and went to core stability and convinced me it was a good idea. So along I went. As I said, I went in too hard, too ill-informed and couldn't move the next day. Actually, the next five days. I couldn't bend, lower myself into chairs, get on and off the tube or get dressed without extensively groaning and feeling like the end was near. It was AWFUL. I had to pep-talk myself to walk down the stairs in my house and at the tube station and only left my desk at work for the fire alarm and other emergencies like starvation.

The silly mistakes I made however, were rectified by dusting off and starting again. Lightest weights, lots of warming up, and knowing when to just take a break even if no one else. Three classes later and it’s brilliant. My shoulders ache less, I can carry more, my back feels better and I can do a plank without shaking and falling over immediately. If you are able and want to do something improve your strength and joints, go for this. Start slow, very slow, and work your way to heavier weights slowly. Start with no weights if necessary. It doesn’t matter how long it takes to get used to it, it really helps.

The class I go to starts with stretching and then involves lots of squatting and bending and planking, so it is necessary to stop every now and then to rest and not upset your joints too much. Don’t worry about the people who don’t break a sweat or look like they could do it with the rest of the class sitting on their back. They are most probably not of this planet or incredibly fit gym enthusiasts who don’t have the same problems as you.

It is important to work on your core. It is. It’s also a good way to tone up and you can definitely feel the difference after a few sessions. I still ache the next day every time but it’s now a good ache. The sort of ache where you think ‘I ache so I can eat what I want because I go to the gym and I am amazing.’

If you do take this up, make sure the instructor is a good one and knows about hypermobility and asks you about your fitness before you start. if you are looking for a gym, see if there is a Better branch near you. it's a bargain for a membership with classes and they do lots of good activities at all levels. http://www.better.org.uk/ Also take it very slow if you are new to this sort of exercise. Not being able to put your own socks on for the best part of week is not winning at life. 

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Life as a chronic pain sufferer: Hypermobility and Ehlers-Danlos syndrome. Alex's Story.

If you ask a 22 year old woman to describe her life, you would expect something along the lines of work, friends, socialising, holidays, opportunities and plans. When I asked 22 year old Alex-Marie Wood, I didn’t get any of those things. Instead she listed daily chronic pain, endless GP appointments, being unable to work and losing her dream job, unable to socialise or exert herself and feelings of depression. A day in Alex’s life can consist of migraines, mental and physical fatigue, abdominal pain, waiting rooms for medical appointments and when she is at her worst, help with dressing, bathing and eating. It doesn’t remotely sound like a life anyone should be leading, even though her current situation is a big step up from being diagnosed with growing pains and hypochondria in her teens. Alex has hypermobility syndrome and suspected Ehlers-Danlos syndrome. Two conditions that few doctors know much about and aren’t widely heard of in the public. They aren’t actually rare; they are sadly quite common, but rarely diagnosed properly.

EDS is a genetic connective tissue condition that is a multi-systemic syndrome. Connective tissue covers over 95% of your body so there is little that escapes the symptoms. (EDS UK) More can be read about EDS here: http://bend-trend-hms.blogspot.co.uk/2013/11/ehlers-danlos-syndrome-confusion-types.html

Joint hypermobility means some or all of a person's joints have an unusually large range of movement.

People with hypermobility are particularly supple and able to move their limbs into positions others find impossible. (EDS UK)

Many people with hypermobile joints do not have any problems or need treatment. However, joint hypermobility can sometimes cause unpleasant symptoms, such as:

• joint pain
• back pain
• dislocated joints – when the joint comes out if its correct position
• soft tissue injuries, such as tenosynovitis (inflammation of the protective sheath around a tendon)

If hypermobility causes these types of symptoms it is often called joint hypermobility syndrome. http://www.nhs.uk/conditions/joint-hypermobility/Pages/Introduction.aspx

Lots of sufferers of both of these syndromes will know that diagnosis is a battle. A long hard, painful one at that. Alex shared her story with me from symptoms when she was a child to where she is at now with referrals and treatments:

I had been in and out of the doctor’s office on a regular basis from a rather young age, complaining of chest pains, fatigue, shortness of breath, joint pains, dislocations, anxiety and feeling dizzy but it was put down to growing pains and a case of hypochondria. I wasn't able to do as much as the other children as I was always falling over or damaging myself by accident so I lived a rather sheltered life. In March 2013 I became ill with glandular fever, and this then seemed to exacerbate the symptoms I had been suffering throughout my childhood. The doctors initially thought I had Chronic fatigue syndrome or fibromyalgia as I was in chronic pain and very lethargic. I was sent to an endocrinologist which examined me and did endocrinology and rheumatology blood work, everything came back negative. I rapidly deteriorated in December, losing between 7-9 pounds a week for six weeks as I struggled to keep food and liquid down. After ten months of testing and going back and forth to the GP I was sent to a rheumatologist for a second opinion in January of this year and that was when I was diagnosed with hypermobility syndrome (with a beighton score of 9/9).

The beighton score is a measure of how hypermobile an individual is and how widespread it is. Clinically, it is quick to do and can be assessed in minutes. However it is not always straight forward to diagnose someone with hypermobility syndrome, as there are other symptoms that can be present. More info on this can be found on the Hypermobility Syndrome Association’s website: http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/

Pain from hypermobility varies greatly from person to person. It can come on suddenly and can be completely debilitating for one person, whereas for others it can come and go as nagging pains through the day, disappearing at times then returning. Unfortunately for Alex, she is at the high end of the pain scale. It is difficult for people to look at someone who appears normal and looks healthy and understand that they are actually suffering chronic pain. Expressing to people that the pain is real is sometimes hard enough, even to doctors and physiotherapists. The life of a ‘spoonie’ as chronic pain sufferers are known can turn into an isolated and very miserable one.

I can become bed ridden for days, sometimes up to a week if I can't move because the pain is simply too much to bear. However, on a good day I am able to care for myself and go about my day as long as I am cautious and don't partake in anything too strenuous. I have a lot of bad days but I spend a lot of time educating researching this condition and I am making positive lifestyle changes to reduce the amount of time I spend as a prisoner in my own body.

 

As I am limited in what I am capable of, I do not go to any social events or go out to town to shop or socialise as I will really suffer for it for the next few days. I experience good days and bad days but I can never tell how I will be feeling from one day to the next. Being so limited in what I was able to do, I feel that this has really affected my relationships with family and friends. My mental and physical fatigue plagues me the most, I get tired very easily and I struggle to keep up with conversation so I spend a lot of my time sitting quietly. I am told that I am distant and I don't get myself involved, but I am usually in a state where I am overwhelmed by pain and I can't concentrate on what is going on around me. I'm not able to keep up with the pace of life that my family and friends are at, and I sometimes can get left behind which can be lonely at times. My friends and family are very supportive and they try to include me in what they can, but given my fragility I wouldn't be able to go out for a meal, partying, out shopping, go to Thorpe park or on a family holiday so I miss out on quite a lot of things.

 

It is not just socialising and taking part in days out and normal activities that is a problem. Working when in pain can become impossible and opportunities can become scarce and non-existent as employers will more often than not dismiss ‘hypermobility’ or ‘over-bendy joints’ as an excuse. This is not because people are unreasonable, it’s because they don’t have an understanding, which is why Alex is keen that people know what can happen when you have an invisible illness.

 

I have been dismissed from my place of work because of my illness, and not only was the company providing me with amazing career prospects but they were paying for me to complete a degree with other accreditation. I was working towards becoming a systems engineer and I was working for one of the best IT companies in the world, it was my dream and I was just over half way through when I was told I would be unable to continue working and studying as I was no longer well enough to work or sit an exam. I am still unable to work and I fear that I am not going to get back into a healthy state so that I can return to work.

 

Everyone knows what it’s like to miss out on stuff for being ill, but for most this is due to having flu, or a virus and they can jump back into life as soon as they are better. However, imagine having to face the fact that to get better, you must first convince the right people that something is wrong before you can begin a long path of referrals, appointments and therapy to begin to get yourself back on track. It’s an overwhelming and very realistic thing for many people in Alex’s shoes. Awareness for HMS and EDS must improve, as well as training for medical professionals, so her story doesn’t get repeated time and time again.  Alex’s last words in her summary are certainly not something that should be felt or said by anyone: I have become depressed, I have nearly given up and I have almost lost my mind to this condition.

 

The more awareness the conditions get, the quicker and better suffers can be treated and get the help they need to keep their lives, and their minds, in happier times.

The HMSA website offers lots of help and advice: http://hypermobility.org/

As does the EDS support UK: http://www.ehlers-danlos.org/

There are also big social networks on Facebook and Twitter where stories are shared and advice offered, so anyone suffering in silence should take a look and speak up, just like Alex.

 

The newest charity for Ehlers-Danlos Syndrome

Annabelle Griffin is a bright and happy five year old. She likes playing, and music and being a princess. Unlike most five year olds however, she is the driving force behind a newly registered UK charity. Annabelle, or AJ is she as affectionately known, has vascular Ehlers-Danlos syndrome. VEDS is the most serious branch of Ehlers-Danlos, a syndrome that is not widely known of, especially, and worryingly, among the medical community.

AJ is at constant risk of a rupture of one of her internal organs due to a lack of collagen in her body, which could prove fatal. It can happen at any time, with no prior warning for her family. She was diagnosed aged 3. A detailed post on AJ’s condition and VEDS can be read here: http://bend-trend-hms.blogspot.co.uk/2014/02/rare-disease-day-annabelles-story-life.html

It is living with this constant fear and dealing with EDS on a daily basis that led AJ’s family to start a charity- Annabelle’s Challenge. May is Ehlers-Danlos awareness month, and it has seen Annabelle’s Challenge become a registered and official charity in the UK.

Parents Sarah and Jared along with lots of support in their home town, Bury, have already put on countless fundraising events and built up a strong presence on Twitter. Trustees behind the new charity are now calling on local people in Bury and beyond to come forward to help with fundraising and share their skills to help expand their work. Jared says: “As a small charity the trustees will need volunteers to help with fundraising and awareness campaigning and we are very grateful to everyone in the local community who have supported us so far helping us to raise £15,600 over the past year.

It is commonly said among the EDS community that the syndrome, which consists of different types, is not rare, just rarely diagnosed. EDS awareness month has seen a rise in blog posts and online discussion, with people across the globe helping to spread information.

Ehlers-Danlos has a long list of symptoms and complications, and can make life seriously challenging. Jared added: “The worst part of the condition is not knowing when a significant medical event could take place, she could simply be sat watching TV and without warning have a spontaneous rupture of her internal organs which could kill her.”

Earlier this year Annabelle suffered from an accident at home, a trauma injury to her nose required an emergency visit to A&E and a subsequent operation requiring plastic surgery under general anaesthetic. Jared says: “It was a very tense and emotional time for us as we were unsure how the operation would go because her skin is so fragile, the medical team had knowledge of Ehlers-Danlos Syndrome but not Vascular type. Unfortunately not many medical professionals are aware of VEDS – and this prompted our decision to register Annabelle’s Challenge as a charity.”

Annabelle’s Challenge will work with the EDS Diagnostic Service based in London and Sheffield to help provide support to newly diagnosed patients. It will also be raising funds to further the education of VEDS within the medical profession and general public.

You can keep up to date and read lots more about VEDS and AJ’s story here: http://www.annabelleschallenge.org/

EDS awareness month is continuing and by spreading information it can be hoped that people who either are affected directly or indirectly can gain more understanding of this complex condition.

The Ehlers-Danlos syndrome Association website has lots of useful information and links: https://www.ehlers-danlos.org/

Barn dancing, paris and a marriage: One week in hypermobile Hell.

I am lucky enough to sometimes forget I have hypermobility and EDS. That is only sometimes though. Other times it jumps out from whichever rock it has been hiding under and repeatedly slaps me in the face and storms around at night making sure I know it’s there and it means business. One week in the life of someone lacking collagen who’s joints are very grumpy and impossible to please can be a hellish week indeed.

You still have to go to work (if you can) and do everyday things like showering and eating and sleeping, but it is extremely difficult when these things HURT SO MUCH.

I recently had one week full of hypermobile nightmares. The worst I have had in a very long time. To make things more exciting though, the week did involve a wedding, a barn dance and Paris. Sublaxation is not fun. On a scale of one-fun it wouldn’t even make one. I haven’t had an awful lot of experience of subluxation apart from one time when I was walking home and my hip decided to put an end to the walking part. “Hello can you pick me up. I can’t move.”

Last week however, while at a wedding, wearing VERY sensible shoes might I add, my hip started to throb.  I tried to walk it off at first as sometimes unexplained random hip pain does occur, but to no avail. Fortunately the food, wine and speech section soon kicked in which meant excessive sitting and excessive wine. I’m not sure if the excessive wine was an advantage or not, but my hips soon became much less of a focus.

It’s not every day a wedding includes a barn dance, but on this occasion it did. I think barn dancing was the final straw. That is definitely not something I ever imaged playing a factor in my joint woes but hey, it’s actually quite fun (when you have had 1 or 15 drinks) and clearly good exercise, as my hip can attest to.

So my hip sublaxed, I had to limp around a wedding, then get a four hour train home the next day in the company of a hangover and a killer back ache and on Monday I was due to do a retinal screening clinic and stand for the best part of nine hours. I also live in a house with LOTS of stairs, so becoming thirsty or needing food pretty much turned into the Hunger Games. Perfect! Obviously the next day didn’t happen and I had to retreat to my parents to lay in a burning hot bath and watch tv with my dog via a painful physio session and lots of limping. Every cloud.

Of course, because hypermobility waits for no one, this all coincided with me popping across to Paris with a friend for a quick break. Paris involves A LOT of walking. A lot of museums. A lot of steps. My hip behaved for most of it. I only had to limp and complain a couple of times a day, but then after day one my shoulder began to ache and click and crack. I mean why not, it’s not like I was trying to sight see or anything. I clearly rewarded myself for putting up with life with ALL OF THE PASTRY.  But it was still a massive pain, in every sense of the word.

 

I am now in urgent need of loads of physio, my hip is cracking constantly and my shoulder is doing a routine where it kicks in with full on pain every hour or so. Throw starting a new job into the mix and developing massive brain fog, and you pretty much have it all. I definitely forgot just how bad it can be sometimes, and it makes me wonder exactly how people who suffer in this way constantly can face the day. But they do, as I seen on facebook groups and on forums and through chatting to people on Twitter.

Personally, I think someone somewhere needs to start handing out ‘congratulations you live with HMS/EDS’ certificates along with wine and brownies. And maybe puppies?

The above is basically just because this is PRETTY.

Snacking for joint pain

I’m having a day where I finish eating and immediately begin looking for the next snack victim. I blame catered meetings and knowing where the treats are kept at work. I was told earlier that eating strawberries is good for joint pain, as I sat at the kitchen table shoving them in my mouth and nursing a painful shoulder. Multi-tasking is key. Apparently the science behind this is that strawberries may reduce levels of C-reactive protein which is a sign of inflammation. Most sufferers of hypermobile joints will know how painful they become when inflamed. I’ve also been trying anti-inflammatory smoothies after exercise lately which I have been quite impressed with. http://bend-trend-hms.blogspot.co.uk/2014/03/liquid-sunshine-smoothie-for-your-joints.html 

Another equally tasty snack is nuts- namely almonds, walnuts and seeds which are high in omega-3 fatty acids and also help with inflammation.

Something I wasn’t aware of before is that an imbalance in omega-6 and omega-3 fatty acids can lead to pain and inflammation in joints. Health conscious people who keep on top of their veg consumption will be keeping their omega-6 down, as veg helps to reduce levels. Heartbreakingly of course junk food increases omega-3 fatty acids, so if you feel like your nutrition could do with some tweaking these are good things to keep in mind.

Having hypermobility syndrome or EDS Hypermobility type can mean that you have seriously alter your way of life to help deal with pain and joint problems. Diet, along with some willpower if you struggle with that sort of thing can really help.

Blueberries and raspberries along with strawberries may also be helpful as they are packed with vitamin C, which is good for keeping joint wear and tear at bay.

There is also a vitamin B-3 (some sort of secret vitamin perhaps as I only found out about it a week or so ago) that is also known as niacin. Word on the internet is that it helps protect your joints for the future, reducing the risk of developing nasty joint and pain issues like osteoarthritis. Good food sources for this are crimini mushrooms and tuna, chicken breast, asparagus and salmon.

Happy munching.

Rare Disease Day 2014

On the 28^th February it is Rare Disease Day. This is the seventh official RDD, which is co-ordinated by EURORDIS. In the past more than 70 countries worldwide have taken part in planning activities and raising awareness for chosen diseases. The day aims to grab the attention of the public and decision makers about rare diseases and the impact they have people. You don’t just have to have an illness to suffer, suffering spreads to family and friends too. A lot of people who write about having Hypermobility Syndrome and Ehlers-Danlos online often refer to feeling alone when it comes to their health problems. This isn’t the way it should be as these conditions are not rare, they are just rarely diagnosed.

http://www.rarediseaseday.org/article/about-rare-disease-day 

The Rare Disease Day website has ideas and information about getting involved. The theme of this year is care, better care and caring more! The RDD team have a Facebook page and Twitter feed with information updates. Worth a look if you are a rare disease sufferer. I’ve found a lot of people take comfort in knowing they can have a support system, and relief when they find one that suits them.

https://www.facebook.com/rarediseaseday

https://twitter.com/rarediseaseday

http://www.youtube.com/rarediseaseday

Eating for your joints

I stare at a pot of cod liver oil capsules on my desk at work every day. Not the most pleasant of views. Even the use of the words ‘liver’ and ‘oil’ upset me slightly. Of course they are extremely important for good joint care, as physios and doctors have told me time and time again, meaning I have a daily ten second meeting with Seven Seas. Cod liver oil capsules aren’t the only thing you can do to give your joints a helping hand. Hypermobility sufferers should take extra care in looking after joints. One way to do this is through one of life’s greatest pleasures- food.

Glucosamine is a good place to start with eating your joints healthy. It is a compound that is found naturally in the body and produces glycosaminoglycan, which is a cartilage repairing molecule. Oooh science. Your body will do its best to repair your joints should cartilage damage happen, but it will do an even better job if you have a rich supply of glucosamine.

Shrimp shells, lobster shells and crab shells all contain glucosamine. This may not sound like the most appetising collection of snacks, as the shells are often considered difficult to digest and are often discarded. However, if you are a budding chef and have an experimental streak in the kitchen, the shells can be ground down and added to soups and casseroles.

If this is all a bit much on the effort front, try sports drinks. While some are very sugary and calorific, there are lots of lower sugar and less calorie options around too. People with hypermobility, when they are able, should be doing exercise anyway, so having a sports drink when you are being a good person and working out makes perfect sense. It’s important to try and be helpful to your body with glucosamine, as the body makes less as we age.

Manganese is a helping co-factor in building cartilage and is much easier to add into your diet. The manganese will aid the glucosamine to keep your joints in good shape. Simply eating more beans, nuts, whole grains such as bread and cereal, seafood and leafy vegetables can give you a good dose of manganese. Drinking milk is helpful too.

Seafood is a bit of an emerging pattern here and it is a champion when it comes to omega 3 fatty acids. You can only get this from including it in your diet or taking supplements. Your body factory won’t be whipping any up on the production line, so it’s important to throw some in. The anti-inflammatory assistance from omega 3 helps to calm down pain and swelling in joints, something hypermobility sufferers know plenty about. Eating fish like cod, salmon, sardines and trout are ideal, as are walnuts and eggs. Flax seeds are also very good for omega 3, and can be found in some breads, or can be sprinkled on cereal or in yogurts.

Stepping away from fish, vitamins C and E should be featuring in food diaries. They help to produce collagen, which is a key factor for hypermobility.  http://bend-trend-hms.blogspot.co.uk/2013/11/science-and-no-more-silence.html

Corn, nuts, potatoes, oats, papayas, broccoli, tomatoes, strawberries and of course all citrus and zingy fruits are a good place to start.

A lot of activities that come with hypermobility are unpleasant and painful, so eating to be helpful is definitely a nice change from the clicking, cracking and aching of physical therapy and exercise.

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.  

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/ 

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.