Living with Fibromyalgia

Over at butyoudontlooksick.com there’s an article up right now on eating and drinking healthily during the holiday period.

See the article here.

FibroAction are one of the charities that can benefit from EveryClick’s ‘Christmas? Considerate Done’ campaign. The idea is you save money, save paper and help support FibroAction by sending e-cards for Christmas.

The data from EveryClick is that on average, charity Christmas cards give just 10% of their cost to charity (based on data from the Charity Advisories Trust). With EveryClick, 121%* of the amount you donate will get to the charity you choose. This Christmas it really is possible to spend less and give more. Christmas cards generate up to 20,000 tonnes of waste each year (based on data from Defra). Giving through EveryClick means you can send your contacts a menaingful greeting without filling up their recycling bins.

The minimum donation is only £5 and for that you can send a Christmas card to up to 100 recipients.

Check it out here.

Jazz Pharmaceuticals, Inc. and UCB last week announced positive preliminary top-line results from the first of two Phase III pivotal clinical trials of sodium oxybate (JZP-6) for the treatment of Fibromyalgia Syndrome (Fibro).

Jazz Pharmaceuticals anticipates submitting a New Drug Application for sodium oxybate to the U.S. Food and Drug Administration by the end of 2009. UCB anticipates filing in the EU shortly after. UCB has the exclusive marketing and distribution rights to sodium oxybate for Fibromyalgia Syndrome in Europe and some other countries outside North America.

For more information, see the FibroAction article.

Fibromyalgia Syndrome symptoms seem to have a strong genetic background, according to an article e-published ahead of print in the European Journal of Pain, that was discussed on FibroAction’s website recently.

A team of researchers from the Pain Clinic at Helsinki University Central Hospital, Finland studied the prevalence and heritability of symptoms associated with Fibromyalgia Syndrome (Fibro) in a population-based working-age twin sample.

The researchers concluded that:

“The symptoms known to be associated with fibromyalgia seem to have a strong genetic background.”

To see the full article on FibroAction’s website, click here.

Leslie Hunt talks Lyrics, Life, and Lupus with ButYouDontLookSick.com founder Christine Donato. If you ever wonder how far you can go with a chronic illness, just check out these chronic babes!

Leslie Hunt has been performing as a musician since childhood and by the age of thirteen, Leslie had starred in productions of “Fiddler on the Roof” and “Music Man” and performed on stage with Kenny Rogers. She was in American Idol Season 6 (2007)…and at the age of seven, Leslie was diagnosed with Lupus SLE.

Christine Miserandino, a fellow Lupus patient is a member of the Lupus Alliance of America Board of Directors, and founder of ButYouDontLookSick.com. She is loved the world over for ‘The Spoon Theory’, her tale of what life is really like when you live with a chronic invisible illness.

Check out Christine’s interview with Leslie here.

Rosalind Joffe is author of the popular blog, ‘Working With Chronic Illness’, and co-author of the blog ‘Keep Working Girlfriend’. She founded the career coaching practice, cicoach.com, building on her experiences living and working with MS and ulcerative colitis, and is dedicated to helping others with chronic illness develop the skills they need to succeed in the workplace.

Together with her ‘Keep Working Girlfriend’ blog co-author, Joan Friedlander, Rosalind has written a book ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’, which encourages women with chronic illness to stay employed to preserve their independence and sense of self, and helps teach them the knowledge and skills they need to do so. In the book, Fibromyalgia Syndrome (Fibro) is included along with autoimmune conditions such as Lupus and Rheumatoid Arthritis, as the impact and variable nature of the conditions are very similar.

I thought ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’ was a great book: positive, proactive and good to read. Staying in work is quite often not properly considered as an option for someone with a hronic illness andi shoudl be – with the right advice and support, a working life can be maintained and a work-life balance supported. Work can be very positive and this shouldn’t be overlooked.

This was actually dicussed yesterday at a parliamentary reception I attended that was organised by the Neurological Alliance to highlight the upcoming welfare reforms.  wonderful lady with MS who had worked at the Department of Health for many years after diagnosis spoke and told of how she stayed in work and how positive this was to her for many years.

I wish Rosalind’s book had been around and I had known about it years ago. I would have found it extremely helpful.

I interviewed Rosalind this summer and here are a couple of her answers. To see the full interview, go to the FibroAction website Patients Section.

……………………

Lindsey: What does an executive career coach actually do? I think it is a role more common in the US, but it sounds like something I could have used in the past!

Rosalind: There are several parts to that answer. First as a career coach, my role is to help a person develop the competencies he or she needs to be more successful on the job. Sometimes that means in their current job. Sometimes it means finding a new job or even a new career. As a career coach for people who live with chronic illness, it inevitably includes a clear assessment regarding how the illness impacts their ability to do that job so a person can make the best decisions looking ahead. It often includes working on how you talk about symptoms, accommodations and the other issues that come up when you live with unpredictable and debilitating health. We also work on how to use your networks to get a new job, how to assess an organizational or job fit and so on – all with chronic illness as the backdrop to these decisions. I’ve developed a home study program that’s a compendium to my book and it’s called ‘The Working with Chronic illness Workbook’ – it’s on my website, cicoach.com. It includes many of these assessments. But I do want to clarify that although I was an executive coach at one time, I don’t classify myself as an executive career coach because I work with anyone who cares about work as a career. That’s why my tagline is: The resource for professionals who live with chronic illness.

Lindsey: Many people with chronic illness really struggle at work: I know I have done and I’m sure many readers are thinking that work is not good for their health and maybe they shouldn’t be working. You obviously feel very strongly that women with chronic illness should be able to keep working – and should keep working. It’s something that you discuss from a number of different angles in ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’, but can you summarise why you think this is so important?

Rosalind: Well, to begin with, as we say in the book, when you stop working, you become financially vulnerable, unless you’re independently wealthy. Even if you have a spouse or parents to support you, you’re relyling on others and that leaves many people feeling vulnerable and hurts their self esteem. And illness leaves you feeling vulnerable enough – and lowers your self esteem. Unemployment usually compounds those negative feelings. Then, there is the social and emotional feedback we get from working that you lose when you’re unemployed. Most of us have had jobs in which we felt we’d rather be anywhere than here, but it’s easy to forget how long a day can be when you’re unemployed. Especially if you’re under 60 and most of the people around you are at work. Also, no doubt, work can be a burden but it can also be a distraction.

That said, I had two children and was so sick with ulcerative colitis that I couldn’t work for two years and could barely get out of bed to get them to school. So I know that there are times when you just can’t work. And there are jobs that are so ‘toxic’ that they are bad for you. Finally there are some people who don’t easily fit into the “working world” and perhaps they wouldn’t have been happy being employed (or self employed) regardless of their health. The book was written for people who want to keep working – to encourage them because there are many factors that make it so difficult, particularly for women.

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To buy ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’ and help FibroAction whilst doing so, buy the book through FibroAction’s a-store here.

My Christmas Appeal for FibroAction…I’d like to try and raise £500 for FibroAction over the holiday season in order to raise awareness of Fibromyalgia Syndrome (Fibro). If you feel you can help, even if it’s just a few £ or $, then thank you!

Why am I doing this?
Fibro is a devastating condition that can ruin people’s lives. Because of Fibro I lost half my twenties to illness, disabled and unable to follow the career I had worked so hard for. I then found a good doctor, got effective treatment and found that I need not have lost so much, if only help had been available. I want to try to help other people with Fibro get back on their feet and maybe prevent people from having their live turned upside down by this condition.

Why FibroAction?
FibroAction is a new charity that I helped set up this year that has achieved wonders in a short space of time with a tiny budget. Organisations like the NHS (UK National Health Service) and the BBC have updated their information on Fibromyalgia Syndrome (Fibro) thanks to FibroAction and numerous sufferers have been helped.

However, funding is needed to enable FibroAction to carry on with its work and to have even more of an impact in 2009.

We know the credit crunch is hitting many people hard, but people with Fibro can be even worse off and many Fibro sufferers are struggling to stay working or go back to work, despite not receiving any effective treatment for this debilitating condition, because their family’s finances are suffering.

The provision of good information and support can enable sufferers to get the treatment they need and this is one of FibroAction’s core tasks.

Please help support FibroAction at this difficult time and make a difference to millions of people who are suffering, many unneccesarily.

Why £500?

I’ve aimed for £500 as this isn’t a huge sum when split amongst many – every £1 or £2 or $1 or $2 helps! – but it would be a significant amount of running costs for FibroAction. Money is made to stretch an awfully long way with FibroAction!

How to Help?

Click here to go to my appeal page.

The appeal page is on EveryClick’s website – they provide a one-stop-shop enabling everyone to access effective and engaging ways to give online to any UK charity. The Charities Trust collects all payments, reclaims Gift Aid, and disburses money to charities monthly.

For a currency converter, click here.

Thanks for reading and thanks for helping!

An announcement made today on the FibroAction website:

FibroAction is pleased to announce that, following our input, Patient UK has updated their online information on Fibromyalgia Syndrome (Fibro).

This is great news! Patient UK is well respected and well used too, both by patients and also by GPs. The information they provide on Fibro is now far more up-to-date and accurate.

Positive changes in the information include:

• The causes of Fibro discussed better reflect research, as they now discuss substance P levels, changes in the brain and central sensitisation.
• It is noted that the name “Fibromyalgia” does not accurately describe the condition.
• The prevalence of Fibro is now more accurate at 1 in 50 or 2%.
• There is not even a hint that Fibro is caused by depression or anxiety.
• The information on the tender points is far more accurate – it is even noted that hypersensitivity to pain can be all over.
• It is noted that quality of life can be affected by Fibro.
• The treatment section is now based on the EULAR evidence based recommendations for the treatment of Fibro.

There are of course still some minor niggles, but the information is so much better than it was that I really think this is a step forward. This update means that it is even more unlikely that, when a GP goes to look up information on Fibro to give to their patients, they will find inaccurate or out-of-date information. FibroAction aims to make up-to-date and accurate information about Fibro easily accessible for both patients and doctors and encouraging the updating of other online information sources is a key part of this. I’m glad that Patient UK were happy to work with us to review and update their information.

The Christmas lecture by American Fibro expert Andrew Holman MD will now be held at Guy’s Hospital, London instead of St. Thomas’ Hospital, London. This alteration has been made at the request of the Fibromyalgia Syndrome clinic at Guy’s Hospital. Guy’s Hospital and St. Thomas’ Hospital are part of the same NHS Trust and are located near each other in south-east London.

US rheumatologist and Fibromyalgia Syndrome expert Andrew J. Holman MD will be giving a lecture on Fibromyalgia Syndrome on Monday 22nd December, as part of a short visit to the UK. The lecture will be hosted by Prof John E. Davies, who leads the Fibromyalgia Syndrome clinic at Guy’s Hospital, and it is being organised by FibroAction in conjunction with Prof Davies.

This Christmas lecture presents a rare opportunity to hear and ask questions of an expert who is leading the way into new avenues of knowledge and treatment regarding Fibromyalgia Syndrome.

For more information and to register, see the FibroAction Events page.

Two petitions regarding Fibromyalgia Syndrome that have been submitted to the No. 10 Downing Street website are coming up to their deadlines soon. If you’re a UK citizen or expat and haven’t “signed” please do so! If the petitions get enough signatures then a Government representative will reply to them.

The first has a deadline of 10 December 2008.

“We the undersigned petition the Prime Minister to Ease the pressure on fibromyalgia sufferers and the benefits system including medical assistance. “

http://petitions.number10.gov.uk/Fibrobenefit/

The second petition was one I submitted when working for FMA UK briefly at the beginning of the year. Its deadline is 21 February 2009, but it currently only has aroun 100 sigantures!

“We the undersigned petition the Prime Minister to ensure that doctors are educated about Fibromyalgia and Myofascial Pain.”

http://petitions.number10.gov.uk/FMS-CMP/

Remember that after submitting your name and address (for verification only) you need to click on the link in the confirmation email or it won’t count.