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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Parsley tea for period troubles

Working alongside doctors and nurses everyday means they are all subjected to me firing questions at them about medical complaints, of which I have plenty. About five months ago, I was busy complaining about how badly I suffer from late periods and pains and oily skin and hair at the joyous time of the month, when a colleague popped up and told me I needed parsley. I have never given much thought to parsley, I mean; it’s not that riveting is it? I knew nothing about it apart from that it came in two forms: flat leaf or curly. Fascinating stuff.

I was very apprehensive when I was told that I should brew myself some parsley tea. I am a tea enthusiast. I love the stuff. Normal tea, green tea, cranberry tea, ginger tea, black tea, tea with milk, tea with honey. All of the tea. The idea of parsley tea however, did not really fill me with caffeine delight. Apparently parsley, which is rich in vitamin C and A, both powerful antioxidants, is actually laden with health benefits. The most surprising thing to hear is that it can help to regulate periods and hurry along late ones. Upon hearing this, I politely nodded and thought to myself ‘errr, yeah okay.’

However, after a really horrible stressful month, my period was very late (about 2 weeks and I was definitely not pregnant), I was bloated, I was grumpy, my skin was horrible and my hair needed washing twice a day to look presentable. I was so fed up that I swung by Sainsbury’s and got some parsley (and about 2000 calories worth of M&Ms). My housemates were mildly horrified to see me throwing some freshly chopped herbs into a cup of boiled water, and to be honest, I was with them. It doesn’t look or smell like much fun. I was instructed to drink two cups for two days. It was pretty easy, just finely chop a handful, pour over the water and wait five minutes. Guess what happened after cup 3?

It worked. Or it was a coincidence, but either way, I was impressed. I also had the most mild and quickly passing stomach cramps for a very long time. I began googling parsley tea and stumbled across loads of forums and posts stating that it really helped with periods and bad skin and a number of other things. There were also a few that said it was rubbish, of course. I decided to try it again the following month, and drank a few cups in between for good measure, and hey presto, barely any period pains and it was bang on time, another extremely novel and sadly exciting thing in my life. After two months of herby, bitty, light green tea, my skin was also looking better. I am as sceptical as the next person about this kind of thing, but I believe in parsley tea. I have used it for four months, and my period pains have subsided, it’s been on time and I don’t look seven months pregnant the week before. I mentioned it in passing to my GP, who said it was definitely good for you, though in true GP fashion when it comes to herbal remedies, she didn’t have much else to say.

I would recommend giving it a try if you have similar woes. However, please brace yourself for the taste. Unless you are parsley groupie, I would add honey or lemon to soften the blow. Drinking it quite hot works too, as the longer you leave it the stronger the taste. It can also apparently help with fatigue and is good for cleansing the kidneys as it is rich in potassium; ideal after a heavy weekend or mid-week happy hour. However I have been told that it isn’t recommended for people with kidney conditions and shouldn’t be drank when pregnant.

If you suffer from misbehaving periods however, I would give it a go.  Just another reason why tea is fabulous.

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.