Monthly Archives: August 2012

The importance of sharing our stories

Having a rare and little understood disease can be pretty isolating. Your friends and family don’t always ‘get’ what you’re going through and there’s no one to ask those questions that crop up from time to time about your experiences. Yet, it’s a lot easier now than it must have been before the advent of the internet.

Before the internet, if you wanted to find out anything about your disease – or the drugs you were being prescribed – you had to rely on leaflets handed out by your health care professional or go to the library to try and find out some more information. You had NO idea what other people were being prescribed, nor how well (or badly) they were dealing with their condition.

When I eventually found the Palindromic Rheumatism Society website, it was a complete revelation. I realised that I was NOT going mad, I wasn’t just a weird unique oddity and I was not the only person to have this experience. This was incredibly reassuring. There was more information about symptoms and treatment than I’d had from any medical professional. Even better was the site’s forum where I was able to read about people’s experiences – and share mine – chat to them online, and ask questions. Reading about other people’s experiences, and chatting with them online has been totally invaluable in helping me cope and helping me become more informed about PR.

My rheumatologist told me that my fatigue symptoms weren’t to do with my PR. Yet, so many other people around the world with PR did have issues with fatigue which was enough to reassure me that actually, whatever ‘the expert’ was telling me, he wasn’t necessarily right. Every single time I read about how someone’s flare moves from one joint to another overnight (or within hours), I feel validated. Every time I read that someone’s tried all the painkillers and nothing works for them either makes me feel less isolated – I’m not the only one this happens to. Reading about how people sometimes feel like they’re coming down with the flu – and then don’t – before a flare up or just from time to time, made a lightbulb in my head go off as I realised that I get that too – and it’s probably part of my condition.

Although there are support groups for people with arthritis in Manchester and an online forum on the UK’s Arthritis Care website, there’s nothing quite like connecting with people with exactly the same diagnosis.  Even though no two of us are identical, many of them do have symptoms and experiences that are similar to mine.

I’ve now discovered a quite active Facebook group for people with PR and that’s also connected me with more people, and this blog has too. Your comments have been so important to me. Connecting with others across the world just can’t be underestimated. We can compare notes about what’s worked and what hasn’t rather than just relying on the very limited body of ‘scientific’ research or on what our rheumatologist tells us. We can support each other through the hard times, and we can use the information we’ve gleaned from fellow sufferers and take that back to our medical professionals. Because, however many exams those medical professionals have taken, we’re the real experts on our condition. The more we can share with each other, the stronger we can be in coping with our own illnesses.

My hope is that eventually someone will think to use these groups and forums to do some meaningful research into our condition – and hopefully in the long run find some more effective treatments too.

Other useful forums and sites helping people connect

And if you’re on twitter (as I am), the hashtag #spoonie is being used by many people to connect



I’ve been on the Gabapentin for five weeks now. My body didn’t like it AT ALL for the first few days as it made me feel really dizzy and out of it. But it’s gradually adjusted. I started on a low dose, increasing it as the Dr suggested. As I’ve basically had some sort of flare up for most of the time that I’ve been the medication, it doesn’t look like it’s doing anything (yet?). As a result, I’m now on the highest dose that was recommended (900mg a day split into 300mg three times).

I’ve had two pretty painful flare ups (intensity of around 9 out of 10) and a fair few single and multiple joint flare ups of lesser intensity over the past five weeks. Unfortunately, most of these flare ups coincided with a two week break from work! Yet again I’m reminded that I can’t take a holiday from my condition. Thankfully, my holiday (in the Western Isles) was so fab that the pain and flare ups did not really detract from my enjoyment too much and my mobility was fine on the days that we took walks. I also drove for the first time in over two years. It was a bit of a relief as I was really nervous about it but it seems that I haven’t forgotten how to drive and the roads were pretty empty (even if they were sometimes a little hairy!).

After having read the medication leaflet, naturally I was scared and worried about the dreaded side effects. So far, it seems that there are two. I have put on weight (as predicted by an online friend) – though that could be due to two weeks of Scottish food/portions and not much exercise!  The other side effect, which I really didn’t anticipate is that I feel pretty hyperactive a lot of the time! It’s been nice (especially on holiday) to have more energy (and more available spoons!) than normal. However, as it’s also a bit like a caffeine high, it’s not something I particularly want to have on a permanent basis. It definitely feels like an artificial injection of energy and it’s also making it quite hard to concentrate and focus (which has also been a problem when I have low energy!).

Today is the first pain-free day for ages, but it’s unlikely to be down to the medication. I shall keep monitoring it and will discuss it with my new GP when I see her next week.

In the meantime, here’s one of my favourite photos from my holiday!

Getting arty with my camera!