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Rebecca Barnard

2017-01-05 10:49

Ruth's Story

It started completely out of the blue – with a really weird swollen and painful finger. I thought I must have injured it and went to get it X-rayed. Nothing showed up and eventually the swelling and pain

disappeared so I didn't think much of it, however, a few months later I started to get these really weird episodes of pain, stiffness and swelling. Mostly this was in my fingers or wrists but not always the same ones and it became pretty debilitating. I was a fit and active 34 year old but these were new and alarming symptoms. After a lot of insistence, I got referred by my GP to a rheumatologist, but nothing showed up in the blood tests and I wasn't treated very well by the consultant. I was starting to wonder if it was all in my head – and yet I knew that it wasn't. Eventually, six months later I was finally diagnosed with palindromic rheumatism (PR). That was 12 years ago now.

Palindromic rheumatism is a really bizarre and relatively uncommon type of inflammatory arthritis, with very little rhyme or reason to it and often with no physical evidence in any blood test. Many medical professionals, even rheumatologists, haven't heard of it and research into cause and treatments is very limited, so I was very lucky that I got diagnosed so quickly. Palindromic rheumatism is so unusual that it can take years to get a diagnosis – particularly as many rheumatologists prefer to see 'proof' in a blood test before diagnosing anything.

I can have periods of remission where I have normal energy and no pain at all, or I can be completely debilitated. Flares can be in one joint or many. They can stick for months on end, or just for just a few hours. I can start the day with a flare in one joint, and finish it with a flare somewhere else entirely. I can be dancing around in the morning and unable to walk in the afternoon. I can be merrily going about my life one day and completely unable to get out of the bed from severe fatigue the next. It's not predictable at all. Flare-ups vary in length, severity and in joint and it makes it very difficult to plan. I've even had a flare in my jaw, which meant that I could only eat soup for a day or so. The main upside of PR – if there is one - is that, unlike rheumatoid arthritis, it doesn't tend to cause joint damage. Unfortunately, that's little compensation when I'm crying out in pain and can't dress myself.

I have tried a number of treatments, and am currently on hydroxychloroquine. Life on this medication is better than life without it, but I still flare and it can still get pretty bad. Normal
painkillers do nothing for me, and I've tried a bunch of alternative therapies, and they don't seem to do very much either.

In the last 12 years, I've sort of got used to living with PR, but sometimes a really bad flare can take me completely by surprise and I can be completely floored by just how bad it can be. I meditate
regularly, and this has really helped me come to accept my condition. I work for a mental health charity and am lucky that I have a very flexible employer. I run wellbeing courses, including a course for people with long-term conditions. I do 21 hours a week as I know I would not have the energy to be able to work full time anymore. My job is very rewarding and I'm lucky that I am working in an environment where my condition is actually a plus as it connects me with the people who come on my courses.

I have tried a number of different things to help me live better with illness but the two main things that make the most difference are mindfulness meditation and exercise, particularly yoga. Of course, I can't be as consistent with my exercise as I used to be before arthritis, but I just adjust sessions according to pain and fatigue levels. I do know that the more I move, the happier I am, and that's
got to be good for both my mental and physical health. I have fibromyalgia as well now, and I notice that this is more active on days where I am inactive, so I make a special effort to do a short yoga practice soon after waking, to help keep it at bay.

If I had a pound for every time someone made a comment to me about the weather and arthritis, I would be a very rich woman, but unfortunately it isn't as simple as the arthritis worsening when the weather gets colder. I've had terrible flares in the summer and long periods of remission in the winter. I know that humidity can be a trigger, and changing seasons (around March and September) can be particularly bad. I haven't noticed a pattern since logging on the cloudy app, but I think my condition is just so weird, that it wouldn't surprise me if the arthritis was being contrary just to confuse the data! The only time I noticed a very definite link was when I was living and working
in Madagascar. We were in a very dry region but two days before a big wind, my wrist would start to flare up really badly. Nothing has been as clear cut back in the UK.

I blog at http://palindromicrheumatism.wordpress.com and that has been very therapeutic as it has connected me with other people with the same condition. There is also a very supportive group on Facebook. I'm very pleased that Cloudy is conducting this research, but I'd also really like some more money and energy is put into treatments for palindromic rheumatism. It would be nice to think that one day there might be a cure.