Quarterly Newsletter – April – June 2016

Welcome to our third quarterly newsletter where we can update you on news, articles and highlights of the last 3 months.

April 2016

April saw us launch our CRPS diagnosis time survey on Facebook following a small survey we did on our Twitter account. We were all quite surprised at the results, which showed an overall decrease in time from symptom onset to diagnosis. It also transpires that it may be the first piece of research that has been done on diagnosis times!! Thank you all who took the time to answer it for us…twitter

On the 28th we reached our first Twitter milestone of 1000 followers! Thank you to all of you who are part of the Twitter-verse and for those of you who aren’t yet you can follow us at @CRPSUK

May 2016

rnhrdMay 7th saw us fund and host the first CRPS UK Child and Young Persons conference in the chapel at the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath.

Turnout was promising with new friendships formed over lunch; not to mention being lucky enough to have a range of inspirational speakers including Ben, a wheelchair basketball player for the England under 23’s team!

 

 

June 2016

dysonWe all had a great time at the All Bar One bar in Bath on the 17th, catching up with friends from previous meets and making new ones. It turned out that we had far too much food to eat and ended up giving it to a group of young men; who in turn ended up making a very generous donation and joined in with the raffle. It was great to see both of our sponsors there, Louise Hart on behalf of Withy King and both Lynn and Andrew from AutoMech Cheddar as well as a very well behaved Dyson.

meet up

What does it mean…?

Looking on the forum and support pages there are lots of technical terms being used which many of the more “experienced” know but which may be confusing or new to others. Not everyone is comfortable asking what things mean. This section will look at different technical words/phrases and try to explain them in an easy to understand way.

This quarter will focus on Dystonia…

Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. Dystonia is a neurological movement disobrainrder and can appear as a secondary issue in CRPS. Faulty signals from the brain cause muscles to spasm and pull on the body incorrectly. This forces the body into twisting, make repetitive movements or have an abnormal posture. Sometimes the symptoms are accompanied by a dystonic tremor. Typically in CRPS the foot will turn inwards and fingers can contract down towards the palm of the hand. Treatments are available and most people do manage to develop successful strategies for living with dystonia combining treatment with pain control and sensory tricks, such as mirror image therapy, to help with social situations.

Many people with dystonia are initially mistaken for a mental health (or psychological) condition. In the vast majority of cases, dystonia is a neurological illness and does not have a mental health cause. However, it is also increasingly understood, that although mental health conditions do not normally cause dystonia, there can be an important inter-relationship in some cases between dystonia and mental health conditions such as stress, depression and anxiety.

(Our thanks to Dystonia UK for some additional information www.dystonia.org.uk)

 

Article of the quarter

Did you know that every day on our public Facebook page, we publish an article which we think would be of interest to you.

Our most viewed article of this quarter was on how to cope when your chronic pain affects friends, family and social life with over 1300 views!

http://princessinthetower.org/how-chronic-pain-affects-your-friendships-and-what-to-do-about-it/

 

Fundraising News

We have had some great fundraising activities that have been completed this quarter and some great ones coming up.

April 17th saw a group of housemates at Plymouth University complete the Plymouth Half Marathon for us.

Brendon, who’s mum Danielle James has CRPS, and his band of friends managed to raise a magnificent £520! plymouth half

victoria appleby2April 24th was Victoria Appleby turn and she chose to complete a sprint triathlon.  She told us “A friend of mine approached me knowing that I do varioussporting events in a year and asked if I’d do an event to raise money and awareness as her daughter is a CRPS sufferer! I’d already got my triathlon booked so I said I’d do it no problem! I raised £160, it was a great day, family and friends turned up to support me, it’s an amazing cause and I really hope we’ve raised awareness too!!”

victoria appleby1

Throughout April Ridgewood School in Scawsby, Doncaster raised £372.97 thanks to Alison Cassidy’s children. Amy and Eddie did amazing presentations on CRPS and raised awareness to over 1000 more people in doing so!

 

May 28th was a surprise event for us. One of our forum members, Debbie Gill, contacted us to let us know a friend of hers, Amanda, held a ladies get together in the village where she lives and is donating £110 to us from funds raised at the event through entry fees, tarot reading and Jamberry sales among others.

June 5th saw Roz Jones organise a sponsored walk/wheel/scoot/crutch to help raise awareness of CRPS, fundraise and have an afternoon meet up. The weather held fair for everyone and mid-way refreshments were certainly appreciated! Roz managed to raise £103 and Thomas Cunningham also raised £120 by doing the event as part of his scouts fundraising badge and Sara Greaves donated an additional £10, making a total of £233!

walk n rollJune 12th saw a new event to us where Vicky Ayling hosted a week long online Jamberry party giving out lots of information, hints and tips on the product and raised £25 from sales. She has very kindly doubled the donation to £50…

 

For those who have still to pay in monies, please can you contact Rebecca, as treasurer, to arrange this. Ideally these should be paid as soon as possible the event either by BACS or cheque. Rebecca can be emailed at treasurer@crps-uk.org

 

Your fundraising and sponsorship efforts are most definitely appreciated. Did you know that these funds go towards things like funding this years’ Child and Young Persons Conference, our word cloudregional meet ups and merchandise stock as well as having an amount allocated for research, our patient grant scheme and for increasing awareness within primary care through education and CRPS materials. Unfortunately these things, like all the best things, take time to make sure they’re done in the most effective way, are factually correct and endorsed where possible by leaders in the field of CRPS.

If you are arranging an event, or would like to, then please contact Amanda by email at amanda.nelson@crps-uk.org so that she is aware of what is going on, who needs sponsorship forms or needs any further help.

easy fundraisingYou can also raise funds for CRPS UK without it costing you anything extra by shopping online https://www.easyfundraising.org.uk/causes/crpsuk/ in store or through the Easy Fundraising app.

 

 

Social Media

Our communities are growing in size, with lots of new members joining. You’ll find great support, lots of interesting discussions, articles, motivation and information.

Like all forums there are a wide variety of members in age and experience each with their own opinions and thoughts; this is what really makes it such a fantastic place. Thank you to everyone for their kindness, tolerance and non-judgemental attitudes.

To join our support community you’ll find us at https://www.facebook.com/groups/CRPSUKlivingwithpain/

For family and friends

https://www.facebook.com/groups/CRPSUKFriendsAndFamily/

Our public Facebook page; for general CRPS information and upcoming events. https://www.facebook.com/CRPSUK1/

Our Twitter feed is also gaining momentum and we’re over the 1900 mark now.

Follow us @CRPSUK

 

Special thanks…thanks

We would like to thank so many companies for their generous donations of raffle prizes and support including Waitrose in Malmesbury, Millefiori Milano and Build-A-Bear Workshop in Swindon Designer Outlet Village, Sainsbury in Bath, 66 Book Club in High Wycombe, Yum Yum Thai in Bath and WHSmith and so many more including our sponsors Withy King and Automech Cheddar, without whom we wouldn’t be where we are now.

 

Upcoming events…

2nd July – 3 Peaks Challenge by John Clarke and friends – at time of print this event has already taken place – full update in our next newsletter!

2nd October – The Great Scottish Run by Stefano Michelini

2nd October – The start of the 100 mile walk by Vicky, Nicci and Mei Lin

7th November 2016 – Colour the World Orange CRPS Awareness Day – a little way off yet but if you’re organising something shopping centres, supermarket bag packing slots, getting public buildings lit orange etc. get booked up quickly so need to be arranged soon.

 

 

On the way soon….

Some very exciting news and events coming soon keep an eye on the Facebook page for more information.coming soon

New CRPS UK membership package deal

 

Last but not least….how to contact us

Via email admin@crps-uk.org

Amanda for fundraising queries amanda.nelson@crps-uk.org

Rebecca for finance and fundraising payments treasurer@crps-uk.org

Via our website www.crps-uk.org

Or through our Facebook pages or Twitter feed

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