Research into Palindromic Rheumatism

One of the problems of having a relatively rare condition is that there is very little known about it. This means that it can take months or even years to get a proper diagnosis because not all rheumatologists have heard of it, and certainly most doctors haven’t. PR is particularly hard because symptoms aren’t always visible but even when they are, by the time you get to see the Dr, they may have disappeared completely. This means that not only are people having to deal with flare ups of pain and fatigue, but without a diagnosis they can’t get proper treatment. There’s also quite a big psychological impact of having a bunch of, frankly, weird symptoms and not having a diagnosis.

Of course, the problems don’t just stop once you know what condition you have. What treatment you get is very dependent on the quality of your specialist and on how much knowledge they have. But even the ‘best’ clinician is still limited because the body of research into PR is so small.  This means that, even though there’s been a bunch of research into other types of arthritic diseases, there’s very little known about this specific one. Treatment – as you’ll have gathered from reading my blog – is very much trial and error, and usually based on the treatment for rheumatoid arthritis.  I had symptoms for over two years before I actually received any disease modifying drugs because my original clinicians didn’t take my condition seriously. Yet, because there is the potential for PR to develop into rheumatoid arthritis, it could be crucial for treatment with disease modifying drugs to start early to minimise the chance of this happening.

The other difficult thing about having a rare condition is that, as a patient, it’s really hard to get information about it, to discover whether what you’re experiencing is ‘normal’ and to hear about different ways of coping or dealing with the flare ups or pain. When I was first diagnosed, Arthritis Care had a leaflet which was completely inaccurate. It said that PR did not attack multiple joints at once, which is definitely not my experience at all. Thankfully, this leaflet has now been updated.

There is some good news. Arthritis Research UK are starting to do some research into PR. During the first stage, they will be asking anyone diagnosed with PR to complete a survey and to share their experiences. So if you’ve come across this blog and have PR (or think you have?) and haven’t filled out the survey yet, then please do go and fill it out. Hopefully the project will also raise awareness of PR and make it easier for new people experiencing symptoms to get a diagnosis and treatment.

http://www.arthritisresearchuk.org/palindromic

Remembering to be mindful

The tendinitis that I’ve been suffering since the New Year had really set me back emotionally and physically. As well as being in pain pretty much constantly, it was also affecting the quality of my sleep. This meant that I spent daytimes feeling really low on energy and consequently low emotionally as well. Last week, I was away with my partner and noticed that a great deal of my conversation with him was dominated by me simply saying “I’m really tired”, and also “I’m so fed up of feeling tired all the time”. He reminded me that I had not meditated regularly for quite a while and that this probably meant that I was coping less well than usual.

When I thought about things, I realised that I am mostly pretty good at dealing with sporadic pain and the unpredictable aspect of my pain and fatigue. I rarely spend too much mental energy worrying about where it’s going to turn up next, or how long flares will last for. I never spend any time worrying that I’ll get worse. This is a big change from how I was when I was first diagnosed with palindromic rheumatism.

Yet the pretty much constant pain of the tendinitis and fatigue was somehow harder to deal with. It had started to grind me down physically, and that was feeding into how I was feeling and thinking. So, I decided to kickstart my mindfulness and meditation practice by reading a book that had been on my shelf for a while: Mindfulness, A Practical Guide to Finding Peace in a Frantic World by Mark Williams and Danny Penman. I also decided to try and follow the program in the book.

My first introduction to mindfulness and mindfulness based cognitive therapy was on a wonderful course for people living with a long-term condition led by Breathworks.  It really helped me accept the realities of my condition, and gave me some really useful tools for coping, not just with my arthritis but with life in general. So my own experience of mindfulness has already been a positive one. However, my meditation practice – the foundation of mindfulness – has been somewhat sporadic. Sometimes I meditate daily, sometimes even twice a day. Other times I can go days or even weeks without prioritising meditation. Even though I’m getting practised at mindfulness itself, it’s not enough on its own if you don’t meditate.

So I read the first few chapters of the book to try and inspire me to prioritise my meditation again. One of the premises of MBCT (mindfulness based cognitive therapy) is that not only can our thoughts drive our emotions, but it can work the other way as well. In my case, my low energy and tiredness was feeding into my thoughts and instead of just accepting those feelings, my mind fed off these negative and low emotions, exacerbating things and making me feel even lower.  My mind was stuck, focusing only on the pain and tiredness and not on anything else that was going on externally or internally. It was like a broken record.

Most key for me to remember, was that my mind was becoming really focused on wishing things were different. My internal narrative was basically on a loop constantly saying “I wish I had more energy”, I wish I wasn’t so tired”. It wasn’t even the pain that was the main issue. It was the fatigue and tiredness. Instead of accepting the pain and fatigue for what they were, my mind was occupied with wishing it was different. In the book, it says that focusing on the gap between “how you feel and how you want to feel” highlights that gap, and this doesn’t help things, it only makes it worse. The trouble was, just wishing my pain and tiredness away wasn’t going make them go away. And it wasn’t as if I wasn’t doing things to help myself. I was. The only thing I wasn’t doing was accepting or meditating.

Once I realised how much energy I had been spending on wishing I had more energy, and wishing it was different, the clouds lifted. Since I’ve stopped wishing things were different and accepting them as they were I actually started to feel better. I’m still tired, but I’m saving energy by not focusing on wishing I had more energy – if that makes any sense!  I’ve managed to meditate almost daily since starting the program.

The funny thing is, I know I feel better after a yoga nidra meditation – a deep relaxing meditation. And I know that regular meditation does help. And it’s not just me that thinks that. Research studies all over the world are showing how beneficial mindfulness meditation can be. Yet, I don’t always do the things that are good for me or that will help me feel better. Thanks to mindfulness, I’m not going to beat myself up over it or spend too much time on dwelling on why this is. After all, I’m human, and I’m not the only one who forgets to do the things that are good for her!  I’m just going to keep on keeping on with my practice, and to really try and meditate as often as I can (which means timetabling it in and prioritising it).

I’m also going to remember that the key to this recent shift is that spending time on wishing things are different to how they are, especially when it’s about something that you cannot change, is a waste of mental and physical energy.

thankfully, I can also report that the tendonitis is healing – slowly.  The pain is much less, and I am sleeping better.

Some meditation resources that I’ve found useful include:

• Headspace offers a great introduction to mindfulness meditation in its free “Take 10″ programme which includes ten, ten minute meditations. I paid for the full year’s programme on an app and have progressed through quite a few of the daily programmes and found them really excellent.
• Meditation apps from Oasis: There are a few different free and paid-for apps.
• Insight Timer app: Basically just a meditation timer for people who don’t need much leading with their meditations.
• Breathworks: Offers CDs, books and courses (online and throughout the country) on mindfulness. Especially relevant for people with chronic illness.
• Everyday Mindfulness: Blog and forum for people using mindfuless

A different kind of pain

This is my first blog written using voice-activated software, so please excuse me if it doesn’t always make sense or if there are some strange words in there. It is a strange program which sometimes seems to have a mind of its own!

The reason I’m using it right now is because I have been told to totally rest my right hand and arm. And therein lies a lesson in what happens when you ignore pain. In about the second week of January, I got, what I thought was, a flare in my right wrist. It was more persistent than usual flares but not at that time particularly painful. With my arthritis flares, it doesn’t make much difference whether I rest the joint in question or carry on. I mean, yes it may hurt to use it, but it won’t necessarily make it worse. And so I carried on as normal.

Yet the flare did not go and, in fact, started to get worse. I also noticed a weird swelling about a centimetre from the base of my thumb. It did not appear to be on my joint. After three weeks of constant pain, I decided that this was no normal flare and went to see the doctor. This wasn’t my usual GP nor my rheumatologist and he sent me to A&E for an x-ray in case there was a break. Thankfully there was no break, although the first doctor I saw was completely mystified by my swelling and pain. This did not inspire me with confidence. Thankfully, she called on a more senior doctor and he was able to diagnose tendinitis. I was relieved that it was something identifiable but dismayed to find out that it might be hanging around for a while yet.

The doctor gave me a splint to wear and told me that I needed to completely rest my wrist. Carrying on as normal had probably aggravated it and prolonged the condition. I now needed to rest.  No cooking. No cleaning. No cycling . And no typing. The voice-activated software that I had been sporadically using suddenly became my best friend. Or at least, the type of friend who will help you out when you need it but makes a point of letting you know how much they’re doing for you, acts passive aggressively and then sometimes refuses to do what you want them to do for no apparent reason!!

Yes it’s frustrating, but it’s better than not being able to send e-mails or do any work at all.

10 days on and there still seems to be no discernible improvement to the swelling or the pain. It hurts constantly and then there’s a really fierce, sharp pain when I’m doing something I clearly shouldn’t be doing. I’m trying not to worry about how long it’s going hang around for, and yet at the same time, I’m quite disheartened and fed up of constant pain. A couple of friends have suggested I seek a second opinion in case there is more I could be doing.

I am assuming that this tendinitis episode is related to my PR because I can’t see any other cause. It’s not as if I was doing a lot of typing or using my mouse on the computer for long periods of time before this happened. mind you, these days I attributed almost everything that is unexplainable to my PR.

Thankfully, actual arthritis flares have been quite mild and short lived while I have had to deal with the tendinitis pain so I suppose there’s always a plus side to everything!

Happy New Year!

A short post to welcome in 2013. It’s been a relatively quiet Christmas and New Year, with only a few small flares and a few bouts of fatigue. Overall, the PR has been kind to me in 2012, and I’m hoping it will continue along in this vein for 2013.

Of course, it would be amazing if it became completely dormant during this year, but I know that’s probably too much to ask. As it is, the pain is troublesome, but mostly bearable, and the fatigue sporadic enough to allow me to keep enjoying life.

I have no particular new year’s resolutions, though there are a few things I’d like to do more of (and some, less of) in 2013.

• I’ve bought a juicer and would like to consume more fresh fruit and vegetable juices. Still have not found any conclusive links between any food and my flares or fatigue, but I’ll continue to keep my sugar intake to a minimum. It’s healthier all round, even if it isn’t definitely linked to the PR in any way.
• I would like to keep up doing yoga nidras (a special type of relaxing meditation that both energises AND relaxes me) and do them more often than I have been doing.
• I keep meaning to write a post on ‘the right kind of rest’ and hopefully I’ll get round to doing that sooner in 2013 than later!
• I also hope to be as consistent with my zumba classes as I was in 2012 – making at least one class a week.

The thing I’m looking forward to the most this year in terms of work will be co-facilitating a course for people with long-term health conditions. Called Living Well with a Long-term Condition it will be a 12 week (free) course based in south Manchester. We hope to have up to 15 participants and what we’ll cover will be totally dependent on the people taking part. This means that I can’t design a course or curriculum before the course starts,  but I’m looking forward to the challenge.  Contact me if you live locally and would like to take part.

Happy 2013!

All quiet on the PR front

I haven’t written for a while and although I have a blog post up my sleeve about the ‘right kind of rest’ I haven’t yet got round to writing it! That’s mainly because, along with being busy with work, I’ve had some sort of virus or another for almost two months. Thankfully, I think I’ve finally shaken them all off now.

Interestingly, with my body occupied with trying to fight this cold, or that virus, my arthritis has been very quiet, which can only be a good thing! In fact, it’s been pretty ‘quiet’ overall since September.

I tried to work out (apart from having lots of viruses/colds) what was different about the last three months. Of course, it could just be the PR taking a rest and giving me some respite, but there could possibly be a reason for it, and like all PR sufferers, it’s difficult not to at least try and look for one!

In September, I started to take vitamin D supplements. I’m taking about 1,000 I.U daily in a liquid form, which is supposedly 500% of your RDA! At my last visit to the rheumatologist, he told me that my last two blood tests showed that I was low on D. “Sub-optimal” said the report, with a note to give me some ‘lifestyle and diet’ advice or something. For some reason, I wasn’t even TOLD that I was low on D, let alone given any type of advice. Given that there seems to be lots of interest by the scientific community in Vitamin D and its links to a variety of ailments arthritis, I’d thought that someone would have least have mentioned it to me!

The second difference is that I’ve cut back on sugar over the last three months – cutting down on some of my favourite treats (milk chocolate, home made cakes, biscuits, liquorice sweets) so that I’m only having one ‘treat’-type thing a week. Although my food diary app hasn’t made any link between sugar and flares, there are a couple of people on the PR facebook who think that there may be some link for them. I guess I’ll have a better idea over Christmas, when it might be harder to be as disciplined over my sugar intake!

Finally, I have noticed an interesting thing about how my perception of my PR pain has changed. Sometime in October, I thought that my PR had been completely absent or extremely quiet over the previous six weeks. Then, when I checked my pain diary, I realised that I’d still had some sort of flare up about a third of the time. However, they had almost all been pretty mild. When I’d started with my PR, a mild flare up a third of the time was probably something very scary and worrying. Yet, these days, pain levels of anything less than 4 (out of 10) even if they are happening a third of the time, don’t even register with me as making much of an impact! I’m not sure if this is a good thing or not!

Moving around

One of the weirdest thing about PR is that it can hit any part of the body, at any time. When I tell people that I suffer from arthritis flare ups, they tend to assume that it’s in the fingers.  While it might hit my hands, fingers, or wrists more than other joints in my body, it certainly doesn’t confine itself to there.

This weekend I’m having something of a neck flare up. The last time it flared there was last December, so it’s certainly not that common for me to have, but it’s pretty unpleasant. It hurts to move my neck in any direction, and so sleeping is particularly difficult because it’s agony in my neck every time I shift position in my sleep.  It isn’t hurting too much just so long as I don’t try and move my head position but then when I do, it’s incredibly painful. As with all my other flare ups, taking painkillers is pointless because they don’t work for my PR pain.

Keeping a food diary

There are a lot of old wives’ tales when it comes to arthritis, mostly involving food.  I’ve been told a number of different things about how someone’s grandmother cured her arthritis by giving up this food or that food, or by taking a particular food on a daily basis. I’ve also been told that certain foods are ‘well known’ to trigger flare ups –usually aubergine (my favourite vegetable!), tomatoes and peppers. While I appreciate their intention is to help, quite often they are talking about a relative with osteoarthritis, which is NOT the same as an auto immune arthritis and has different causes and treatments. The interaction with diet is also likely to be different.

Last year, my cousin sourced a research paper conducted in 2000 and published in Clinical and Experimental Rheumatology 18:375-0378 (Palindromic Rheumatism: Effect of Dietary Manipulation). This research was unusual in that it was specifically done on patients with a diagnosis of PR (believe me, there is VERY little research conducted solely on PR patients). The research was only with a small sample (16 patients) and they were monitored to see if there was any link between their flare ups and food. The experiment found that in a small number of patients (only 5), there WAS a link between food and flare ups, though it wasn’t the same food for everyone.