#EDSAwarenessMonth is our chance to talk about the unseen effects EDS can have on a person without a casual observer ever noticing. From anxiety and analgesia side effects through to pain and palpitations if you really think EDS is just about hypermobile joints, you have things all inside out.
We want your pictures, specifically those that show you “looking well” along with a description of all the difficulties the picture doesn’t show. This example is of our patron Hannah Ensor dancing, doesn’t she look marvelous? #MayWeSay… this image does not give any indication of the months of preparation involved, the palpitations, fatigue or the hour it took Hannah to get her heart rate back to something approaching sensible and regain the ability to sit upright after the performance!
Send us your examples, what’s your favourite image of yourself and what doesn’t it show about your EDS?
#EDSAwarenessMonth #MayWeSay… Step up out of the shadows!
Hi everyone! In celebration of having 23,000 likes on Facebook we are running a giveaway until Saturday the 30th April at 6pm. The winner will be announced at 9pm!
To enter all you have to do is comment on the Facebook post with what is your main obstacle for this year you would like to overcome?
Mine would be to work on my anxiety issues and practise relaxation skills to try and achieve this. It could be anything you like from baking a cake from scratch or planning a trip away! Whatever you like, whatever it is we would love to hear your thoughts!
Good luck to you all! #HMSAgiveaway
It’s not essential but sharing is caring 😉
You can find the Facebook post here
I’m sure you’ve heard this word hundreds, if not thousands of times before, and trust me, I’m sick of it too. But, once you realise and understand how helpful it is to pace yourself, you’ll find you do things a lot differently, and not suffer so much.
I’ll let you in on a little secret, we’re all bad at pacing (at the beginning), it takes time, effort and a lot practice to get to grips with it. I’m no master, I still find myself trying to push my limits on the odd occasion but there’s a voice in the back of my head that tells me I need to pace. I need to remember how I’ll suffer. I need to stop; stretch; do another activity.
Pain has so many adverse effects on the sufferer; lifestyle changes, mood changes, body, relationships – there’s a lot to deal with when living with chronic pain. The common denominator with chronic pain sufferers is that they tend to push themselves, they do too much, they don’t stop until they’re in so much pain they can no longer move, and then pay for it for days if not weeks afterwards. However, once the pain eases, the sufferer does the same thing, there’s no learning from the pattern; the vicious cycle of over-activity and intense pain goes on and on and on.
I know it’s frustrating; I’m more than aware how difficult it is to stop doing an activity you really want to finish because you’ve started it and you’ll feel less stressed if it’s complete. But is it worth the agony? Can you do it tomorrow? Can you find an alternative way of doing it? Can you ask for help? Asking for help is a whole other post, so we’ll leave that there.
The amount of times I’ve worked myself up really wanting to wash my hair, been in agony, washed it anyway, and paid for it, is ridiculous. Who cares if my hair is a mess? I’m not leaving the house anyway. I’m the only one paying the price. And for what? Clean hair that nobody will see.
On your good days you do too much, and on your bad days you do nothing – thus leading to underactivity and deconditioning. Neither is good. There needs to be a balance.
So how do you break the cycle? Find the pattern that causes flare-ups for you, everyone will be different. I recognised that I like to get everything done in a short space of time, on the same day without regular breaks, and practically killing myself in the process. With pacing, I can break this up and use the whole day to do my tasks, leave the more strenuous ones for my partner, and take regular breaks.
I also find the Traffic Light technique extremely useful. For this I will plan my days in advance and make a list of things that need to be done on particular days. I then rank these tasks with Red, Amber and Green.
Red = Difficult/Challenging
Amber = Tolerable
Green = Easy
I split up my tasks/chores for the days so there’s a mixture of Red, Amber and Green. I don’t put two Red tasks straight after each other as that would be far too difficult and cause pain.
Examples of Red tasks for me: Ironing, hoovering, showering
Examples of Amber tasks for me: Writing at laptop, driving short distances
Examples of Green tasks for me: Gentle stretching, reading, relaxation
Planning is very important with pacing too, they go hand-in-hand, and you need to plan what you’re going to do in order to pace properly.
It’s important to take into account pacing sitting and standing too. I make sure that I move about and do some gentle stretches if I’m sitting for a period of time otherwise I get stiff and sore.
Pacing is a learning curve, don’t beat yourself up if you could have done something differently, you can always pace again tomorrow.
I hope this little introduction to pacing helps, feel free to leave me any comments or questions and I’ll get back to you as soon as possible.
Hypermobility in Heritable Disorders of Connective Tissue –
An Overview Basic Essentials for medical professionals and members wanting to learn about these conditions
In this section, which is permanently featured in each journal, we provide an overview of the current understanding of hypermobility within Heritable Disorders of Connective Tissue. We ask that all members familiarise themselves with this up-to-date information, which has changed significantly over the past few years due to continuing research. The article contains the basic essentials for professionals and members wanting to learn about these conditions. By working together, in terms of the terminology we use and the symptoms we recognise, we can ensure a greater understanding within the medical community and a clearer, more uniform approach for our service users. The majority of people with hypermobility syndromes are affected mildly and the aim of professionals, who work with people with these conditions, is to encourage them to overcome obstacles by problem solving and staying physically strong. It is thought that with the right support and interventions most people with a hypermobility syndrome can continue to live a normal life, if their condition is, or has been, properly managed. However, as more research based evidence becomes apparent, there is a growing awareness that, for some, the hypermobility aspects of Heritable Disorders of Connective Tissue can cause complex and multi-systemic problems. What is hypermobility? Hypermobility is the term used to describe the ability to move joints beyond the normal range of movement. Joint hypermobility is common in the general population. It may be present in just a few joints or it may be widespread. It is most common in childhood and adolescence, in females, and Asian and Afro-Caribbean races. It tends to lessen with age. In many people joint hypermobility is, therefore, of no medical consequence and commonly does not give rise to symptoms. In some, hypermobility can even be considered an advantage – for example, some athletes, dancers and musicians are specifically selected because of their extra range of movement. It is important to recognise, however, that, whereas flexibility and generalised hypermobility would be considered ‘positive selection criteria’ for many sports and performance activities such as ballet, contemporary dance, gymnastics, netball and high board diving – hypermobility, arising from Disorders of Connective Tissue, such as Ehlers-Danlos syndrome or Joint Hypermobility syndrome, would not. What are the hypermobility syndromes? For a small percentage of the population, instead of being advantageous, hypermobility causes pain, fatigue and other symptoms. For these people, hypermobility can be a sign of more serious underlying conditions, which are often passed to the child by their parents. These conditions are known as Heritable Disorders of Connective Tissue (HDCTs). When our group of medical advisors use the phrase ‘hypermobility syndromes’ they are referring to the group of HDCTs in which symptomatic-hypermobility is now recognised as a common feature. The most common of these is Joint Hypermobility syndrome, thought by many experts to be part of the same spectrum as Ehlers-Danlos syndrome hypermobility type. HDCTs also include the other rarer variants of Ehlers-Danlos syndrome, such as the classical and vascular types, Marfan syndrome, and to differing degrees Osteogenesis Imperfecta and Stickler syndrome. It is important that those working with patients with an HDCT, recognise that each HDCT has its own differing symptoms, which affect each condition specifically, whilst sharing a broader commonality. For instance, in addition to the symptoms shown (see next page), Marfan syndrome and Ehlers-Danlos syndrome vascular type, can involve symptoms which are potentially life threatening and therefore have very different needs, especially when considering physical education / sport and the need for emergency care. Ehlers-Danlos syndrome classical type also has some differing symptoms, which require specific consideration, people with Osteogenesis Imperfecta are more likely to suffer from potential fractures with minimal trauma.
The HMSA can provide information on these specific conditions and more information is also available on our website. In HDCTs, the body’s connective tissue proteins, that give the body its intrinsic toughness, are affected. A person’s joints are lax because they have inherited looser and stretchier connective tissues, particularly their ligaments, tendons, joints and muscles. Hypermobile people can easily injure joints, ligaments, tendons and other ‘soft tissues’ around joints because their joints can twist, or over extend easily, may partially dislocate (or ‘sublux’), or in some cases may fully dislocate. Whilst the majority of hypermobile people do recover from an injury (though this may be slower than normal), others only partially recover, or continue to repeatedly injure various parts of their body. Structural defects in the body’s connective tissue proteins, allow micro-traumas, which are often not visible on tests such as MRIs, to occur repeatedly in the same area of connective tissue without completely healing. Injuries associated with the hypermobility syndromes may cause immediate ‘acute’ pain and can also lead to longer-term ‘persistent pain’, which can be severe and widespread. The skin and internal organs may also be affected, as connective tissue is found in all areas of the body. For some, this can cause additional problems involving the gastrointestinal system, the autonomic nervous system and problems with bladder function. The severity of symptoms, the joints that are affected and the level of pain / fatigue, experienced by those with a hypermobility syndrome, can vary greatly from day to day, or even hour to hour. These symptoms can interfere with daily activities of living, and/or schooling or work. The associated pain can become widespread and persistent and might initially be diagnosed as, or confused with, another condition called fibromyalgia and, on occasion, Myalgic Encephalopathy (ME). Severe fatigue that persists, despite rest or a proper nights sleep, is another common symptom for those with a hypermobility syndrome. In addition, early muscle fatigue may be caused by muscles having to work hard to stabilise joints. Fatigue in the hypermobility syndromes can also easily be confused with a condition called Chronic Fatigue syndrome. It is important that the right diagnosis is made, as the approach to treatment such as physiotherapy and occupational therapy may be different. In each edition of the journal the HMSA’s medical advisers will continue to explore, in more detail, the Heritable Disorders of Connective Tissue, their symptoms and management. Hypermobility syndromes are the group of ‘Heritable Disorders of Connective Tissue’ (HDCTs) in which symptomatic-hypermobility is recognised as a common feature. It is now known that hypermobility syndromes can be complex and affect many bodily functions. The most common of the hypermobility syndromes is Joint Hypermobility syndrome, but the group also includes Ehlers-Danlos syndrome, Marfan syndrome and, to some degree, Osteogenesis Imperfecta and Stickler syndrome. As well as joint problems, a person might have none, or may have any combination of the conditions listed, or, indeed, may never develop these problems.
• Joints that are less stable, leading to hyperextension, sprains, strains, ruptured tendons, torn ligaments, subluxations & dislocations
• Chronic fatigue
• Persistent pain
• Poor proprioception
• Stretchy skin
• Gastrointestinal dysfunction
• Bladder and pelvic problems
• Autonomic dysfunction
• Anxiety, phobic states and depression
Please see our website for more in-depth information: www.hypermobility.org It should be noted that rarer types of Ehlers-Danlos syndrome and other HDCTs such as Marfan syndrome, Stickler syndrome and Osteogenesis Imperfecta each present with their own array of complex symptoms, over and above those listed here. More in-depth information relating to these conditions & links to the individual charity websites involved can be found on our website: www.hypermobility.org
By Claire Smith HMSA Editor & Donna Wicks HMSA CEO / Senior Medical Liaison Officer / RMN (ret) Oct. 2014 HMSA, Sovereign House 22 Shelley Road Worthing W. Sussex BN11 1TU Planned Review Date: Oct.2017 References: •The Hypermobile Child – A Guide for Schools (HMSA October 2014)
•The HMSA Website – This is the website of the Hypermobility Syndromes Association (HMSA). The site includes information for patients and clinicians, the contact details for HMSA regional group leaders, expert clinician and clinic contacts, and links to many useful allied websites.
Spring officially began yesterday and by the end of this week the parliamentary session will be over as the house rises for Easter. With an unexpected last minute reshuffle throwing a spotlight on how we as a society meet the needs of those with disabilities and how individual MPs are acting on behalf of their constituents it’s a good time to remember that your MP works for you whether you voted for them or not, you can and should hold them to account.
There’s still just time to e-mail your MP look them up here and explain to them why you’d like them to pledge their support for people living with hypermobility syndromes. Speak up about how a hypermobility syndrome affects you and the people around you. We’ve been delighted to find that already, over two dozen MPs (from all the UK regions and major political parties) have signed EDM1131 at the request of their constituents.
Back in hypermobility syndromes awareness week at the end of February our Patron, Norman Lamb (Lib Dem, North Norfolk) tabled the Early Day Motion encouraging earlier recognition and treatment for the 1.5 million people in the UK who have hypermobility syndromes, and drawing attention to how late diagnosis, lack of clear information for medical professionals and other barriers to treatment can result in injuries and debilitation that might have been avoidable with appropriate management. These issues can result in severely affected quality of life and socio-economic status for the families involved and of course increased costs to our NHS.
It isn’t just those signing either, the full text of the motion (and MPs who have already signed) is here We’ve also seen MPs unable to sign for one reason or another posing written questions to appropriate ministers asking then to detail their efforts to meet the needs of those with hypermobility syndromes, meeting with HMSA members in their constituencies or otherwise engaging with the opportunity to become more #HMSAware and involved in our efforts to make sure the right support to manage these conditions gets to the right people at the right time.
We’re keeping track of MPs we know to have been contacted, and of those we know to have responded as we move into into the hectic summer season. So if you’ve contacted yours, do let us know, we’ll be keeping in touch with them (and you) about progress we make towards our goals over the remainder of the year.