5 awkward hypermobile situations- Part 2

A bad week and a half with my joints has to led to even more awkwardness in and around London town:

1) Public transport.
 In rush hour it is not fun, everyone knows that. However when you have hypermobile joints to contend with, it's never fun. The worst part has to be getting on a crowded tube and reaching up to the bar to hold on, only to hear and feel your shoulder go POP. You then have to make the choice between being in bad pain and still holding on, or just going solo and falling into everyone and wobbling all over strangers. It's also nice to see people's confused faces as you stand hunched over, leaning against a door because your ankle has gone and you can't make it over to the seats unaided. If there are any seats that is.

2) Cooking.
 You go into the kitchen feeling alright, ready to make a lovely, fresh, healthy meal, or even something simple like toast.What you need to remember is that there are dangers everywhere. Chopping vegetables for the Sunday roast? Not so easy when your shoulder comes out and your wrists seize up. Even buttering bread can cause some intense pain and as for mixing up ingredients for baking, forget it. Always fun when you are hosting a dinner party and you have to explain to guests that dinner is microwaved soup because your joints are having a night out. Literally.

3) Pet owning.
So you're in the local park, taking your little furry bundle of joy for a stroll when they see a fox, another dog, or just a plastic bag blowing in the wind. This has happened to me countless times. The dog runs, the lead tugs, the shoulder comes out, your knee twists. The next few minutes are a blur of retrieving the dog, trying to walk, trying to keep the dog near you and half crawling/half rolling home, much to the amusement of other dog walkers. I also once really hurt the top of my back lifting a cat. No animal is safe.

4) Bras.
I am not at the point in life where I sometimes can't wear a bra at all, and have to settle for a crop top or something similar. The straps hurt, the back hurts, they leave marks and you feel like you've been lifting weights just from having the damn thing on for four hours. Not really ideal when you have a nice dress to wear and a birthday celebration to attend to.

5) Dates.
First date, nice glass of wine, lovely dinner. All going well until you get up out of your chair or slide off your bar stool and your hip comes out and you practically fall in your suitors lap. You then have to explain this whole illness and all the symptoms and you then spend the evening worrying that they a) think you are mad or b) think you might be exaggerating or making it up. Always good to remember that if someone doesn't get it, and you can't make a date because of your condition and they don't understand, they probably aren't worth it!

I'm working on making this a 5 part series, so if anyone has awkward situations to share give me a shout on Twitter! @laurenrellis 

6 ways you know you have an invisible illness

1)      You wake up in the morning looking and feeling fine. All is going well and you think this might be a good day for you. A day where you can get things done and feel like a normal, functioning member of society. Half hour later you are falling apart, things hurt for no logical reason, you can’t quite make it into the shower and you consider putting painkillers in your tea. You still look fine though, and you can't decide if this is good or bad.

2)      You approach inanimate objects with an air of extreme caution. You can’t just throw yourself onto a sofa or jump into bed because who knows what the consequences will be. Waking up in the mornings on a beautiful day and throwing open the curtains is far too dangerous. Your shoulder could come out of its socket and ruin the whole day. Sometimes you also need to mentally prepare to shower. It’s not a decision to be taken lightly.

3)      You experience deep and confusing emotions If you feel well enough to let your hair down and have a few (or a lot) of drinks at the weekend. While most hung-over revelers wake up on Sunday worrying they have drunk-texted someone they shouldn’t or accidentally phoned their boss, you wake up too scared to move. Who knows what damage you might have done while having fun? You have to slowly and carefully make your way to the kitchen to re-hydrate and eat all manner of carbs. If you have got away with it you then begin to feel invincible and consider doing other activities that you normally avoid before realise your head hurts too much and you go back to bed.

4)      Explanation exhaustion. Telling people who aren’t aware invisible illness exists or can’t quite comprehend them becomes tiring very quickly. You may even have devised a short, concise script of what to say when someone asks why you were off sick or why you can’t get out of your chair.

5)      Planning is something you have to do with great care. You never know when symptoms will flare up and mean you can’t go on your day out or go visit your friend or even go for dinner. Plans are for days when you feel good and you know your body will last the duration. You also have to ensure your friends and family understand your condition so they can’t hit you with ‘but you LOOK fine, maybe you can come for a while?’ 

6) You often have to face the injustice of feeling hungover when not so much as a drop of wine has passed your lips. Waking up with a raging headache, joint pain, shaking, needing painkillers just to face the shower. All of these are followed by the overwhelming urge to shout 'WHY ME? WHY? WHY?' but instead you just get on with it and start your day the best you can because you are a God damn warrior. 

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.

Invisible illness: Support is so important

Having hypermobility can mean very different things for different people. While many people who have hypermobility have no symptoms at all, those who have hypermobility syndrome can lead a debilitated and painful life.

This is one end of the spectrum: 22 year old Alex tells of how hypermobility is currently ruling her life:

-Migraines, brain fog, inability to concentrate, loss of time/zoning out for minutes/hours.
-I struggle to complete tasks, work or periods of study. I would not be able to maintain a job or complete full time education. This is because of mental fatigue or 'brain fog'. I lack the concentration to complete even the simplest of tasks and I have a hard time with my short term memory. I can never remember whether I took my medicine, or if I ate at lunch time so managing my own condition can be difficult at times.

Alex doesn't look unwell, which often contributes to the battle

-Having a family member assist in helping me out with everyday tasks, finances, taking medication, managing therapies and appointments, reading emails and post is really helpful as there are times I'm not able to do this for myself. I struggle with verbal communication, I find it hard to maintain or keep up with conversation or explain my point and sometimes  understanding what others are saying. I need someone present with me at appointments or if I go out to help me with communication and traveling.

Sadly Alex is most definitely not alone in feeling this way everyday thanks to her condition. Having your ability to work, socialise, take care of yourself and be dependent in a way most people wouldn't give a second thought to taken away can be truly horrible.

HMS can strike in a very different way though, as it doesn't always cause a sufferer to not be able to work or carry out normal tasks. My end of things are quite different.

I am 24, have a full time job, socialise regularly and travel often. I still suffer with similar problems to Alex, but in a different way. Brain fog is definitely an issue. Sometimes at work my head clouds over and I forget what I am doing, or even who I am talking to. My short term memory can be awful at times.

Sitting at desk is like having a daily mortal enemy. I have to constantly stand and then sit and shift and move around because my back and shoulders despise it. I get extremely tired if I have a night out, which is worsening as I get older (as are hangovers) and really noticeable. Sleeping can be quite uncomfortable and I often wake up in a pretzel like shape with my shoulders out of place, so mornings aren't amazing. My muscles sometimes pull to the point where I have to limp even from the slightest exercise, whereas other times I can run, do fitness classes and swim as much as I like. Despite these things I can still go about day-to-day life largely untroubled.

You learn to adapt when you have a chronic condition. You just get used to the symptoms and learn how to manage them better. It’s when you have symptoms to the extreme, like Alex, that things become different. When your life is basically taken away and replaced with a full time fight, you need the right support system to pull through and stabilise yourself.

The problem with having a condition like HMS or related condition EDS (type 3 is the hypermobility type), is that not enough medical professionals understand too few people are aware that they even exist. Even those who do know and are close to a sufferer can try their hardest to support them, but it’s not always enough. People need education, training  and a better awareness. There are of course amazing carers everywhere, but an invisible illness comes with an extra difficulty: How can you help something that doesn't seem to be there?

Alex wants to get her life back on track, but she is constantly being blocked or delayed. These things will probably be frustratingly similar to fellow chronic illness fighters:

- Many support aids are needed for not just my body but for around my house and are quite expensive. The estimated cost of the aids that I need have passed the £1000 mark.
- I don't have an income other than the pre-assessment ESA rate, I should have had an assessment in May to determine whether I need more support but sadly they are experiencing around 26 week delays
- I have also applied for PIP to help cover the cost of living and to buy supports and appliances to adjust my home to my condition, the estimated wait time to hear back about a claim is around 26-48 weeks
- I have to consider the costs of prescriptions when back in work
Not having the supports that I require are preventing me from having independence, I am causing myself further pain and potentially damage.
*More readily available knowledge about getting help with costs for supports or aids would really benefit me. When I purchase these aids and supports I will have more independence, I will be better able to manage my condition and I will be able to get back into part time work at the very least.

Seeing medical professionals with little to no knowledge of the illness
- Unhelpful with a course of treatment or pain relief due to lack of knowledge.
- When seeing doctors about non HMS related problems they are sometimes reluctant to treat as they’re unsure what could be a symptom.
- Having to explain the condition to a medical professional when seeking treatment.
- Having spent so much time at the doctors or in hospitals since childhood with a multitude of complaints, at times I feel like I'm not being taken seriously and appear to be a hypochondriac.

This causes me anxiety, stress, and over a long period of time has contributed largely to depression. The smallest of stresses can exacerbate my symptoms and make me more susceptible to flare ups.

 We need more awareness of the condition, to have the necessary NHS staff educated on the condition, how to identify it and how to implement a treatment plan.

Alex’s frustration is widespread in the community of rare and invisible illness. I see it every day on social media, where support systems have grown as people come together to share experiences and help each other with diagnosis. Sometimes I read things that alarm me on Facebook groups (simply search for hypermobility and you will find many) and on Twitter, of course self-diagnosis isn’t the best way to go, but the majority of messages and advice is brilliant and you won’t find it in many places.

The associated charities are so motivated and really good at raising awareness and providing educational resources.

The Hypermobility Syndrome Association: http://hypermobility.org/

Ehlers-Danlos Support UK  http://www.ehlers-danlos.org/ 

There are also books available, such as A Guide to Living with Hypermobility Syndrome by Isobel Knight, available on Amazon.

You should also not give up after one failed trip to a GP, or even specialist. I had to see my GP about six times until I got a correct referral to a team that might be of real help to me.

The support for HMS and EDS is nowhere near perfect, and in many cases not even helpful at the moment. It is so important that awareness and fundraising continues so people like Alex can get somewhere, and do simple things like go out for the day for friends, or look for a part-time job. Hopefully the future will be brighter and better and importantly, more visible. 

Collagen- more important than you think

Before I found out I had hypermobility syndrome and began a never ending biology lesson, I thought collagen was just a cosmetic thing. I knew about ‘collagen fillers’ that you get injected into your face to make lips plumper and wrinkles less prominent. I didn’t have any idea just how important it was in your body or how much my lack of it would impact my life.

When I was newly diagnosed and became aware of the syndrome I started seeing the word collagen everywhere. Probably because I was paying more attention to the word, but also because actually, it’s a big part of being a human. I remember buying a lipstick about three years ago that said it was like ‘magical cherry colored collagen’ and made your lips look like you may be distantly related to Kim Kardashian. This then made me think that my joints must be all shriveled and fragile looking and definitely not anything like Kim K.

Collagen is actually the most abundant protein in humans and makes up 30% of the protein content of the body. It can be found everywhere, even in your eyes. It is in your gut, bones, blood vessels, skin, ligaments and tendons; quite the popular protein. It’s very important for strengthening those parts of the body and extremely important to skin. Skin gets its elasticity from collagen and when production starts to slow with age, we start to get wrinkles. I guess this the stage where you start buying ‘magical collagen’ products and letting a man in a lab coat inject some into your face and tell you look fabulous.

I’ve often read that collagen is the super glue of the body, which makes sense to hypermobility sufferers, as they often feel like their joints are falling apart because they are lacking in it. The lack of collagen means a distinct lack of strength in joints, meaning the muscles work harder to keep us going.

Millions of people buy into ways of making collagen produce more rapidly when they get older, meaning they can retain a more youthful look. Let’s face it, it would be ideal if we could just inject some extra collagen into joints or buy a nice collagen rich moisturiser and feel all the pains and aches fade away. Since this sadly isn’t an option, it is vital for hypermobility sufferers to strengthen muscles as much as possible. The stronger they are, the easier they will find it to do the extra work. Imagine coming home after a long day and then immediately having to start hours of extra work with no rest or food. This is what it’s like for muscles. Obviously hypermobility stops some people from having the ability to exercise at all, so small, tiny baby steps to start with are just as important, even if it feels like what you are doing is pointless. Trying is half the battle.

My first ever physio, who was brilliant but went on her honeymoon to Hawaii, never returned and is 

probably currently drinking from a coconut, told me that with hypermobility, what you lack in collagen, you must gain in strength. A nice little piece of advice. Someone should make a cushion with the words sewn on or something.

Enemies of hypermobility

There’s a lot to deal with when you are hypermobile. You have to take so many things into consideration before you do simple tasks that you probably start to feel like your joints are needy little people that live on your body. Or just a massive pain in the backside. Either works. You also begin to form strong enemies in the form of normal everyday tasks. The sort of tasks that wouldn’t normally spark a second thought, until you find your shoulder popping out or your hip jarring and completely taking away your ability to move.

My list of hypermobility enemies changes often. For every object or task that I learn to use differently or just stop using, another one appears.

Current top 5 enemies:

1)      The shower. Probably top of a lot of people’s lists. The hot weather means you are more likely to need more showers (something users of the London underground should take on board). Hair washing is hard, right? The reaching up and rubbing your head and trying to ignore the clicking and grinding happening in both shoulders. Let’s not even mention trying to dry hair. Then there’s the body scrubbing and making sure you get every last bit of conditioner out of your hair. Back ache, shoulder ache, wrist ache, neck ache. So many aches. You can’t even really stand under really hot water and let it massage your back

because it’s so unbearably humid. So many shower issues.

2)      Changing bed sheets. This is a mountain to climb at the best of times. It’s annoying and no matter how many times I try, I can never just make it happen in seconds like my mum. Reaching across the bed to put on sheets and then wrestling the duvet into the cover leaves my shoulders feeling tight and angry and generally ready for a few hours sulking. It usually requires a short break in between duvet and pillow covers to sit and contemplate life and massage a joint or two.

3)      Moisturising and sun cream. This is a new one for me. I’m trying to do it every day because apparently it’s good for your skin and makes you look nicer. At first I thought I was winning as I can moisturise my back by bending my arms in mysterious and should-be-impossible ways to reach everywhere; then something clicks or jars or feels like it might fall off. It’s also tiring by the time you get to your feet. Even toes need suncream.

4)      Furniture. Okay, so moving furniture is not an everyday activity, or at least it shouldn’t be if you have hypermobility syndrome. I did some furniture moving and culling two weeks ago and still can’t completely straighten one arm. Some of it was no heavier than my bag I take to work and I even did the bending at the knees thing that health and safety people love, yet I will never move furniture again. My shoulder, back, ankles, wrists and fingers were outraged. My right arm is still a bit outraged and is a constant reminder that I will never work in the moving business.

5)      Summer shoes. It’s hot and no one wants sweaty feet. I have a vast collection of flip flops and sandals and other shoes that are made for sunny days and sitting in the park. Unfortunately when you have hips that are fragile and like to make sudden moved in their sockets, flimsy shoes with little support apart from some sewn on daisies and a buckle just don’t cut it. Since the heat wave set in I have been tripping over and limping because of wearing sandals. All I want is to wear a dress without channeling Lily Allen circa 2005 in trainers. 

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.

 

Travelling with EDS

When I first booked flights to Thailand it didn’t cross my mind for a second that EDS may pop up and become a problem. I was far too busy making mental lists mostly involving ‘buy bikini, flip flops and check exchange rates.’ I am lucky enough to not have pain and daily issues to the point where I am constantly thinking about my lack of collagen woes. It wasn’t until a friend mentioned that with the travelling I was doing, a suitcase would be a nightmare due to boat rides and needing to wade to shore to get to hotels. “Get yourself a rucksack!” Oh God. The dreaded rucksack. My arch nemesis from festivals.

So I stuffed a few clothes and some shampoo into my rucksack and trotted off to Heathrow in mass excitement and far too much Thai Baht. And now, 6 flights, 2 ferries, one motorbike, about 6 taxis,approximately 20 longtail boat rides later and one military coup, me and my dodgy shoulders and hips are back and just about in one piece.

 I am a frequent flyer and sitting on planes with a bad back and jarred hip is never fun, so the 18 hour journey was a worry. The first flight I took was about six hours, from London to Oman and it was so empty I could lay down across seats and sleep. This delayed the back ache slightly, however the second flight was very busy (screaming children, arguing families) so I had to stay seated and the aches crept into my back.

Nothing was too bad for the first few days, until I moved from a town to an island and spent about two hours carrying my rucksack. Ouch. Very bad shoulder pain. I had expected it, but it still puts a downer on your mood. I also found that my right shoulder, which is the most affected part of my body, was sore when I was swimming too and clicking more than it had in ages. This prompted me to try and carry the bag on my other shoulder only, which obviously led to killer back ache on that side. Lose lose rucksack situation. As ever.

All was not lost though. Thailand is famed for massages, and I took advantage. Asian massage is not a type that I have ever heard of. Little did I know it involved being on a bed with a small lady who bends you into compromising positions and pokes you harshly in the ribs, but who cares. IT REALLY HELPED. It was brutal and I spend the last five minutes thinking ‘PLEASE LET IT END. LET ME LIVE.’ However, I fully recommend. Once I got over the shock and drank the delicious ginger tea they gave out after, I realised how much it had loosened up my hip and shoulders. My rucksack damage felt almost reversed. I would massive recommend asking for details on any massage before taking them though, as I think some massages in spas like these would be too much for hypermobile sufferers. Gentler options are Swedish and oil, whereas Thai massage is very hard and painful. You can thought, aways feed elephants to overcome your massage trauma.

 

Sleeping in hard beds in hostels and waking up feeling like you’ve spent the night on an ironing board is an almost unavoidable part of travelling. For EDS and hypermobile people, it can mean waking up either too stiff to run away from beetles and mosquitos, or actually feel pretty good. I didn’t mind the hard Thai mattresses at all. I still clicked like a frail old lady in the morning but my back felt well supported.

Aches, pains and clicks were fully expected on my travels. I was quite worried for a time about how I would cope given a recent hip sublaxation and constant battle with my shoulders, but it can be done. Investing in a good bag, packing lightly, exercising and not doing elaborate dives from boats or cartwheels on the beach are all helpful. Also keeping deepheat at close proximity when bag carrying is a good idea (though not in the sun, the heat alone without adding to it is almost too much to handle.) I guess it helps a bit when you have an evening off due to martial law taking over town and being curfewed by the army. Lots of bored laying around in a hotel. Also take taxis, don’t scrimp and carry stuff around, they are so cheap, even if it’s a couple of street or from a train stop to a hotel. YOU CAN TRAVEL WITH EDS. You can carry a rucksack. You can clamber on and off of quaint wooden boats and enjoy glorious views like this. You just have to take it slow.

 

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.

The beauty of tea

There are few things in life more comforting than a cuppa. There are few things in life less comforting than painful, stiff joints. So it isn’t it relieving to know that a nice cup of tea can help out with the latter? Since working in an office of dedicated tea lovers I have become a lot more experimental with my choice. I never used to stray from a traditional cup with milk and a sugar (about ten cups a day), but now that has taken a firm back seat. There are SO many flavours of tea, it’s almost overwhelming. I have tried hard to get into green tea for ages because of how many people rave about its health benefits. Once used to the taste, it really isn’t bad at all. You can also go for infused green tea in pretty little boxes. Raspberry is particularly lovely.

For those who suffer from bad joint pain, be it with hypermobility or arthritis, green tea should be considered. There is of course no guarantee that it will instantly wade in and evict pain from sore joints, but there is a large amount written about it that suggests it can lend a hand. As do most things associated with joint pain relief, it is a lot to do with anti-inflammatory properties. Green tea can reduce the production of chemokine in the body, which are proteins that promote inflammation.

Another regular on the joint pain circuit is ginger. Ginger tea has become increasingly popular lately. Used to combat colds and boost the immune system, it can also pack a punch when it comes to inflammation. Ginger features in loads of flavours of tea and is particularly taste bud-friendly when paired with lemon. You can of course make your own if you are that way inclined. Tea is consumed so widely in the UK, that a simple swap to one of these for the many sufferers of joint pain could make a difference. Of course if you feel married to and uneasy about betraying your standard Tetley, swapping one cup a day to start with is fine.

There is a short post about a research study into ginger and joints on the Arthritis Foundation website: http://www.arthritistoday.org/what-you-can-do/eating-well/arthritis-diet/ginger-benefits.php 

I’ve also discovered that apparently rubbing green tea on your face makes you look healthy. But that is another road to go down later.

5 normal things that make you realise how hypermobile you are:

1.       Your morning stretch. There are few greater things in life than waking up and stretching out in bed. However, the joy is slightly hampered when you feel your shoulders moving around in ways they definitely shouldn't be and hear about 35 cracks and clicks that could be coming from anywhere. Hips, toes, knees, they’re all at it. Hypermobile joints can definitely give Rice Crispies a run for their money in the snap, crackle and pop stakes over breakfast.

2.       Hair washing. I have long hair and whenever I reach up to the back of my head to go to work with some shampoo the clicking in my arms and shoulders goes wild. I also start to ache after about 30 seconds of head massaging. The one good thing about this situation is standing under the hot shower and letting it massage your joints a bit (until it goes arctic without warning, which mines really enjoys doing). The downside is once you have recovered, you have conditioner to contend with. Being clean and tangle free is hard.

3.       Cooking. This must apply to lots more people than just me. Chopping, peeling, mixing, grating and rolling cause my already grumpy shoulders to go into full strop-mode. They hate it. I hate it. We all hate it. Last week making fairy cake mixture turned into something not dissimilar to a physio appointment. My shoulders came in and out and cracked and clicked and that was only mixing butter and sugar. Dinner time hypermobility flare ups are not ideal. 

4.       Photos. My sister’s birthday at the weekend provided a wide selection of drunken and ridiculous photos and in most of them my arms look a bit like they have been taken off and sewed back on the wrong way round. Holiday photos where everyone is half naked and looking really pleased on a beach are also often joint shots of shame. It’s a bit like the daily mail side bar of cellulite and things that could be spots but probably aren’t, but for hypermobile people.

5.       Any kind of travel. My morning journey to work in central London involves being squashed into a tube carriage with bits of coat and rucksack in my face. It also often involves holding onto the bars above my head, which my wrists and shoulders love (they don’t) and is always followed by pain. Also the obscene amount of escalators that you have to traipse up and down do absolutely nothing to please hips. Planes are also quite an ordeal. Sitting in small seats with no leg room usually ends in limping off of the plane and being stiff for a few days. Dragging suitcases gets harder every time, but it’s quite nice also being able to off load your luggage on a lovely friend while you float around departures with your YAY holiday face on. 

I’m getting ready to go around southern Thailand in 7 weeks. With a backpack. A large backpack. We shall see.