The HMSA are in support of NSAD! (National stress awareness day)
Persistent Pain and Stress
As more research into persistent or chronic pain is carried out it is becoming clearer that there is a link with the amount of stress a person experiences and in the reverse too. Persistent pain is pain that typically lasts longer than 3 months, without any necessary current injury. Acute pain or sudden onset pain is experienced as a result of injury or trauma. For example; if you stub your toe that is acute pain, but if you are still experiencing pain in your toe three months later it is likely to be persistent pain. That is a very simplified example so please bear that in mind!
Scientists have found that chronic or long term psychological stress affects how we deal with the inflammatory response in our bodies. In a nutshell the more stressed we get the more the illness or health issue causing the pain progresses.
The hormones produced by the human body to regulate our health, includes cortisol, which is also known as the ‘stress hormone’. Cortisol is excreted by the adrenal glands in response to the experience of stress being experienced, whether physical or psychological.
Professor Sheldon Cohen, suggests that ‘prolonged stress alters the effectiveness of cortisol to regulate the inflammatory response because it decreases tissue sensitivity to the hormone’. This process means that the body’s response to inflammation is impaired and it therefore allows the inflammation to get out of hand. It was in Professor Cohen’s early work that the link between people who experience long term psychological stress are more likely to catch colds and he used the common cold to test his theory. He found that when the under stress the immune system is unable to react to hormonal control and as a result this allows inflammation to build which increases the impact of disease.
In the hypermobility syndromes it is possible that, due to the complex and multi-systemic involvement, the impact of stress and its relationship to inflammation (including day to day micro-traumas experienced due to tissue fragility) is something we should consider.
Those of us with long term health conditions which involve pain syndromes, actually do seem to experience more stress than the normal population. The impact on all areas of our lives raises psychological and physical stress levels. Our bodies respond just as everyone else’s but possible with more amplification.
Neuropsychologist, Dr Pierre Rainville, suggests that research is increasingly showing the complex relationship between persistent pain and stress. He says that is does not appear to matter whether pain is a result of accident, illness or surgery but it is often associated with higher levels of stress, and it can be seen in the higher levels of cortisol present. Evidence stated that people with persistent pain seem to be more likely to have corresponding higher levels of cortisol.
There is also evidence that anticipating anxiety and stress can increase cortisol levels. So worrying about something, in particular something going to cause you pain, can increase the stress and experience of pain. Additionally, the more stressed you become over an increasing period of time the more likely you are to develop persistent or chronic pain.
This means we need to convincingly take steps to manage stressful situations. This is why the HMSA promotes stress management as part of the self-management programmes we run. It’s important to look at what areas of your life, is causing anxiety and stress. Some of these areas you will have little or no control over, for this we advise a ‘letting go’ approach. But for things you can control then steps need to take place to purposefully reduce the potential cause of the anxiety and stress. Stress management can involve techniques such as relaxation or meditation. Mindfulness is also something that the HMSA promotes in positive living with the hypermobility syndromes or heritable disorders of connective tissue.
Keep an eye out for the HMSA Spring Journal 2016 as there will be an article on ‘Persistent Pain’!
HMSA Editorial Team
For a limited time only the HMSA are offering a combination deal when purchasing “The Hypermobile Child, A Guide for Schools”.
‘The Hypermobile Child – A Guide for Schools’, is a 32 page colour publication packed full of useful hints and tips for accessing the school curriculum to the maximum. The guide looks at many features of education with age ranging from nursery and starting school to college and university level.
A percentage of students struggle to maintain their education due to having a hypermobility syndrome. These conditions are known as Heritable Disorders of Connective Tissue (HDCTs) and include Joint Hypermobility syndrome, Marfan syndrome, Stickler syndrome and Ehlers-Danlos syndrome (all subtypes) to name a few.
Many parents find the guide extremely helpful when trying to explain to others the issues that their child experiences in school. These can range from pain, fatigue, problems with writing and participating in sport as well as many more. The guide is perfect to be used by teachers, school nurses and any other professional involved in your child’s care. Our guide has been updated within the last 12 months and is also part of the Information Standard, giving you the reassurance that the information within is accurate and up to date.
As a special promotion during our school campaign we are selling these three special School Campaign Bundles to save you some money.
• Bundle one – The Guide for Schools and a mug for £12
• Bundle two – The Guide for Schools and a Zebbi for £12
• Bundle three – The Guide for Schools, a mug, and a Zebbi toy for £18
The Zebbi toy is an ideal choice for a young child starting school or changing classes to help with what can be a difficult period of adjustment.
The mug is the ideal gift for you to have a peaceful tea or coffee after a hectic morning getting children to school.
Or, kick start your Christmas shopping by purchasing a mug for your child to give to their favourite teacher, as a gift at the end of term in December.
This is a limited offer while stocks last.
You can find them in the www.hypermobilityshop.org.
Say Hi to Steve Dormer!
Steve’s running in the Thames Meander Marathon on Saturday 7th November to raise funds for The Hypermobility Syndromes Association.
He’ll be setting off from the YMCA Hawker Centre at 10:00 on a run alongside the river toward Kingston Bridge then back along the Thames Path to Putney Bridge and back to the YMCA so here’s to good running weather and low tides! A few words from Steve…
“My friend and her daughter live with Ehlers-Danlos syndrome (EDS) type III which affects around 1 in 15,000 people. It’s a genetic condition which stops collagen being formed properly – Collagen is the “stretchy” stuff found in all the soft parts of our bodies so the positives arising from this condition is that they don’t get stretch marks, their wrinkles take much longer to form and they have long graceful limbs.
The bad news is that they have to deal with things like dislocating joints, osteoarthritis, osteoporosis, tears in cartiledge, thin and weak muscles that sprain, strain and tear easily, chronic all-over-the body pain, persistent fatigue, fibromyalgia, IBS, organ prolapse, spondylolisthesis (where vertebrae slip on each other and the entire upper body spasms to protect the spine), dizziness, blackouts and brain fog – the pay off ain’t great!”
You can read more about why Steve’s fundraising for us (and donate to the cause) on his VirginMoney fundraising page. We at #TeamHMSA HQ wish the very best of luck to Steve with his training and his run.
We hear the course is almost entirely flat and the organisers are expecting to see a lot of personal bests for the runners taking part. So, three cheers for Steve. We’ll be shaking our #GoTeamHMSA pom poms on the day.
If you join or renew by the 9th October only then you will receive a free pen and HMSA pin badge worth £4.25. This applies to any full HMSA membership. Signing up or renewing through our shop is so simple, just visit www.hypermobilityshop.org, choose the membership button, and from the drop down box choose the membership option you require.
Alternatively, you can email email@example.com with your details and Abi will be more than happy to take a debit or credit card payment from you.
Please bear in mind that nobody under 16 years of age can have a single adult membership due to our safeguarding policy.
This offer will end on the 9th October 2015.
Please also note that this offer is separate to the Journal offer. As many of you may be aware the next edition of the HMSA journal is due out in October. To receive this you must be a current member of the HMSA and either have joined or renewed a lapsed membership by the 1st October.
Many parents, teachers and schools have contacted the Hypermobility Syndromes Association with questions about the hypermobility syndromes (also known as Heritable Disorders of Connective Tissue). Questions range from basic concerns for the safety of the student, to questions about accommodations that meet the needs of students. At the HMSA we decided to do something to address this need and created the HMSA publication, ‘The hypermobile child – a guide for schools’, an invaluable resource for those with Marfan syndrome, Osteogenesis imperfecta, Ehlers-Danlos syndrome, Joint Hypermobility syndrome and Stickler syndrome.
What is the plan?
The HMSA would like to see every school in the country equipped with a copy of this highly acclaimed, comprehensive, 32 page guide, but we really need your help to make it happen.
As a charity the HMSA receive little outside funding, we are, instead, reliant on donations and membership fees to fund our work. We are already working hard on your behalf, implementing education programmes for schools, colleges and universities around the country and providing support for parents of children in education through our Education Support Group, but, with limited resources, we can only do so much and many children with hypermobility syndromes are still struggling at school every day.
The HMSA is asking for your help to change this, by carrying out one or more of the following:
Option 1: Instead of buying one school guide for your child’s school, please buy two and donate the spare to another school near you. By doing this you will be raising awareness within the education system and helping other children who may be struggling at school – visit our shop at: www.hypermobilityshop.org
Option 2: Make a donation of £5 – by texting ‘HMSA13 5’ to 70070. The money raised will to go towards sending our education team into schools, colleges and universities across the country.
Option 3: Make a donation of £4 – by texting ‘HMSA13 4’ to 70070. The money raised will allow us to donate HMSA school guides to schools with whom our education team are working, ensuring a much needed source of information and advice is held on school records and understood by staff.
Please, help us to make a huge difference to so many children’s lives.