We recently had an email from one of our visitors asking why we use the word “sufferer” on our website.  The author of the email, someone with arthritis, felt that the word was negative, depressing and indeed cringeworthy.

I have to say that I agree.  The word “sufferer” simply does not reflect the ethos of Funky Arthur.  Personally speaking, I also find the term unpalatable.   So why do we use it?

Unfortunately it comes down to a technical issue.  When I look at how people find us online, a large proportion of them include the word “sufferer” in their search terms.  Common keywords include “gadgets for arthritis sufferers”, “aids for arthritis sufferers”, “products for arthritis sufferers” and so on.  This means that if we were to remove the word “sufferer” from our site, then fewer people would find us and fewer people would have access to what we hope you agree are some great products.

It’s not all doom and gloom though.  As Funky Arthur grows and becomes better known, I can see a day when we will be able to drop that word altogether.  I for one can’t wait.

If you’ve been diagnosed with rheumatoid arthritis, whether recently or in the past, then you may have found that the shock of diagnosis pretty soon turns into a desperate need for information.  Unfortunately, finding the right information can be difficult.  It’s true that there are some great websites out there, including NHS Choices, which has a comprehensive section on RA,  and of course you should have come away from your rheumatology department weighed down with literature to browse at your leisure.  None of these though, have the personal touch that you get from reading other people’s day to day experiences of living with rheumatoid arthritis.

Recently there has been a big surge in the number of RA bloggers out there, each with a slightly different take on how it feels to live with a chronic illness.  I follow many avidly and have learnt so much through doing so.  Here are a few of my favourite RA bloggers, but let us know if there’s anyone we’ve missed.

RA Warrior - A really comprehensive and frequently updated site which contains all you could ever want to know about the reality of living with RA

RA Guy - Living with RA from a male perspective this time.  The blog includes real profiles of people with RA and an excellent 60 second guide

Synovial Syntax - a British blog from a parent with a real sense of humour (and RA). 

Pollyanna Penguin - Another British blog finding reasons to be cheerful when living with a chronic illness

Single Gal’s Guide to RA - One woman, one crazy city and a chronic disease….

And of course, no mention of the RA community would be complete without including the fabulous forums that exist on the Arthritis Care website and the amazing work done by the National Rheumatoid Arthritis Society.

The panic surrounding the Swine Flu pandemic shows no sign of abating. To date I have received two letters from my daughters school informing me of confirmed swine flu cases (will I be getting one a day soon?). I can barely leave the house without running the risk of being sneezed, coughed or otherwise spluttered on.

As an RA sufferer, what is to be made of all this? Like many people with inflammatory arthritis I take DMARDs, and like many I am concerned about the effect of Swine Flu on my compromised immune system. It’s unclear at the moment whether all RA patients will be eligible for the Swine Flu jab, but so far no gilt-edged invitation has arrived in my letterbox!

What happens if one of my family goes down with Swine Flu - I can hardly avoid them for seven days.  Should I continue with treatment?  Will I need Tamiflu?  There are so many questions yet so little real information, which is why I was so pleased to receive a tweet from Arthritis Ireland telling me about a great Swine Flu downloadable factsheet put together by the Irish Society for Rheumatology. It’s full of really useful information and well worth a look.

Are you a knimble knitter?  Then you could be in with a chance of winning £200 with Arthritis Care’s brand new competition for October.  All you have to do is knit a winter item, such as mittens, gloves or a scarf, take 4 good quality photos and submit your entry with a fee of just £2 per item.  Entries must arrive before 15th February 2010 and there is no limit to the number of items you can enter. Winners will be announced in March. Find out more.

We’ve had some great weather recently which has led many of my friends and colleagues to comment on how much better my arthritis must be.  To be honest unless the weather is particularly damp I don’t notice much of a difference, although the good weather does put me in much better spirits!  Still, many people believe that there is a link between arthritis symptoms and the weather with some 50-90% of people with OA or RA saying that they are sensitive to the increased levels of humidity and low pressure which often precede rain (Met Office website). 

Research into the influence of weather on arthritis has been patchy though. A study in carried out in the 1960s  confined patients to a climate controlled building with no acess to information about the outside weather. The researchers found that patients were able to detect rises in humidity and falls in barometric pressure simply by increased levels of joint pain.  Whilst this study has been criticised due to its small sample size (just 12 participants) an interesting finding was made; the study showed that neither high levels of humidity nor low barometric pressure had an effect on their own - both weather conditions had to be in place for patients to notice increased joint pain. 

Other studies have not been so supportive of the link.  In a much larger study by Sibley, patients were asked to keep a record of their joint symptoms.  These diaries were then correlated with records of local weather conditions.  Sibley found no link between weather conditions and arthritis. 

So what’s to be made of these findings? Some researchers suggest that the effect of poor weather on mood is the real culprit behind perceived increases in joint pain.  Bad weather = bad mood = bad joints!  Others argue that poor weather stops us exercising, again leading to more pain and stiffness.

What do you think?

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