The first flare up that I can really remember happened sometime in April 2004. My middle finger was really really inflamed, stiff and painful. I couldn’t remember doing anything to it at the gym, but perhaps somehow I’d injured it? As it got worse during the day, I wondered if I’d managed to break it and not notice? I even went down to A&E to get it checked out.
Nothing really happened after that for a few months until the summer. I noticed that I was getting really bad pains in my fingers, wrists and hands. It was worse in the morning and sometimes it was so bad, I couldn’t type or hold anything. It wasn’t around permanently, but it was pretty persistent. Eventually, (after about six weeks of pain and weird flare- ups) I decided to seek help. After a lot of insistence, I managed to get referred to the rheumatology department of my local hospital. I saw, what must have been, the least sympathetic consultant in the world who told me off for “panicking” and asking for a referral after only two months of having symptoms. After all, some people are in pain for ‘years’ before they seek help, he said – somewhat unhelpfully.
Although I didn’t get a definite diagnosis there and then, he did tell me that I did have symptoms of arthritis – and that it could be rheumatoid, but we’d have to wait for the blood tests to know for sure. When I asked whether there was any dietary changes I could make, he snapped at me again. “Just don’t eat lots of cream cakes and get fat!” he said. hmmm. helpful.
The first year was probably the worst. My blood tests were free of any rheumatoid factor (a good thing), or inflammation markers (also a good thing), but it also made me feel more confused about what was going on. Although I had been diagnosed with PR, no one actually told ME that diagnosis and so I was unable to do any research or learn more about what I had.
Some of those early flare ups were pretty terrifying. I was single at the time and when it was bad in my hands, I had trouble with doing the most simple of things – opening a can of food for example. I hadn’t yet learned to ask for help from my friends and I felt very alone and isolated. The acute attacks were the worst. I remember sitting up in bed one night, the pain in my shoulder too sharp, too piercing to sleep through. Pain killers weren’t making an iota of difference and I sat, crying my eyes out, debating whether to go to A&E to ask for morphine or something to make it bearable.
By the morning, like many of my flare ups, the pain had calmed down, and by lunchtime, it was gone completely. The curse of PR is also its blessing. The pain can be in one joint one day, and another one entirely on the next. It can be chronic – lasting for weeks (but in different joints each day) or acute and last for mere hours. It can arrive when you least expect it and leave just when you think you can’t bear it any more. It is a strange condition indeed.
I’ve now had PR for 7 years and it’s become part of my life and part of my identity. I can go weeks without flare ups, though generally I will have some kind of pain every week. I went on a very helpful “mindfulness” course for people living with long-term conditions where I learned about acceptance, about pain and about meditation. All have been useful. I have less energy than I used to, before I was diagnosed and have had to try and do less – though I find that very hard. It’s also quite hard to pace yourself when the warning signs only make themselves known when it’s too late.
Things I’ve tried
- I’ve been on hydroxychloraquine for a number of years. When I initially started taking it, my flare ups did reduce (though they did not disappear). My consultant concluded that it MAY be helping, but it could also be a coincidence! The variation in my condition means that it’s so difficult to make a direct correlation. When I stopped taking it for a while, I did get a flare up in a finger that lasted three months and could have started causing damage. So, perhaps it’s stopping me getting worse, if nothing else.
- I did try sulfasalazine but it just made me so tired that I could barely get out of bed.
- Thus far, I haven’t found a combination of pain killers that either touch the acute pain at all, or make much difference to the chronic pain either.
- Heat patches give a small amount of relief – taking the edge of the pain when it’s in my shoulder.
Things that definitely make it worse
- Lack of sleep, overdoing it, very late nights – all make it more likely that I’ll have a flare up . I know I’m out too late when my fingers start stiffening up and aching.
- Extreme humidity ain’t good for it either – I had a very acute attack on holiday in Indonesia in September, and I’m sure that was the reason why.
- While damp weather may not help, it doesn’t necessarily follow that I will have an attack when it’s damp, raining or humid. Change of seasons are usually bad for me.