Tag Archives: arthritis

A quieter time

I stopped taking methotrexate back in December, so I thought I’d report back on how things have been since then. First of all, I noticed the difference in my energy, mood and anxiety almost immediately after stopping. The rheumatology nurse said it would take two weeks to  completely be out of my system, but I started to feel more ‘me’ before that. It was a real relief to get some energy back, and lose some of the dark moods and anxiety that had plagued me for about four months. I hadn’t really expressed to many people the severity of the anxiety that I’d been living with whilst on the methotrexate. The fearful thoughts weren’t taking over and thanks to my mindfulness training, I was able to basically live with them without believing them, but it was hard work, constantly living with a level of mental anxiety that just is not me.

Having the energy to enjoy life – especially around Christmas – meant that I was certain coming off methotrexate was the right decision, even though I did have a few painful flares around the Christmas period. And then, amazingly, I had over a month of being free of flares, fatigue and pain. Towards the end of my time taking methotrexate, I’d been overdoing the sugar, and also cheese – two food groups that I can very easily overeat. So in the New Year, I decided to massively cut down on sugar, and to totally give up dairy. At the same time, I went days without pain, flares or fatigue.

The longer I went without a flare, the more I wondered whether cutting out cheese was a factor. After the first week or so, I thought that it could just be a co-incidence. After two weeks, I was a little hopeful, though I still conceded that it could be a coincidence. After three weeks, I marvelled that this was the longest pain-free period in at least 3 1/2 years. After a month, I wondered if I’d finally cracked it – perhaps dairy is one of my PR triggers and if I just stayed off it, I’d be ‘normal’ again?

Five weeks of no pain is enough to let the hope really slide in. The hope that you’ve maybe entered remission. The hope that perhaps you can live a normal life again. The hope that you’ve found your trigger and that if you just avoided that trigger, you’d be free of flares. That wasn’t to last. Last week I had one night of pain and stiffness that reminded me that with PR, it’s never as straightforward as you’d like it to be. Then yesterday, I had night flares and woke not being able to move the fingers in my left hand, and a sharp and persistent pain in my right wrist.

The pain wasn’t as bad as the disappointment. I managed not to give in to a spiral of thoughts saying things like “you should have known it wouldn’t be as easy as that” and “serve you right for getting hopeful”, but they were there nonetheless. So I had a bit of a cry, and reminded myself that I’d had a long period without pain and that, in and of itself was still worth celebrating. And so I got up, massaged my hands and dragged myself to yoga, which I know helps both mind and body, even though I had to spend a lot of the class in child’s pose resting and feeling sad.

Today I’m pain free again. I’m still going to stay off cheese for another month or so. Just to see. And I’ve been keeping a food diary since the new year, so perhaps that might shed some more light on things in a couple of months when it’s had time to build up some decent data.

In the meantime, the most recent flare has reminded me (once again!) that hopes about a pain free future are all very well, but living a day at a time is the only way to live with PR, because you just never know what’s around the corner. And five weeks without pain, really IS still something worth celebrating.  I won’t totally let go of the hope that one day that might extend to longer, but I’m not going to cling onto it either. I’ve lived with this for long enough to know that spending all my energy just putting hopes or fears into a future that may never  happen just stops you from really living here and now. And here and now really is all there is.

 

Research into PR finally!

I have just returned from Chapel Allerton Hospital in Leeds where I was able to sit in on a presentation to the Patient and Public Involvement group about Palindromic Rheumatism and the research there into PR (funded by Arthritis Research UK) and also early arthritis.

There were three presentations in total, two specifically on PR. I think I need a little time to digest it all as there was a LOT of information given in a very short space of time (half an hour for each presentation). However, I thought I’d blog now about some of my initial impressions.

Firstly, it’s great to know that there is finally some research specifically into Palindromic Rheumatism. As anyone who has read my blog for a while will know, there is precious little research into PR itself. So, I was really pleased to hear Prof Emery say that PR was particularly interesting to study, NOT just for getting a better understanding of PR, but also for possibly improving our understanding of rheumatoid arthritis too – after all, some of us with PR will go on to develop RA. But not all.

Another thing he said –though not in his presentation – is something that I think is pretty important, but not something I have considered before. We were talking afterwards, and he said that there was something going RIGHT about my auto immune response in that it was able to switch itself OFF. I hadn’t thought about it in that way before. I mean, yes, I’ve often felt grateful that in ten years, I’ve got no obvious joint damage and have not apparently progressed to RA (though this does not mean I won’t in the future), but I’ve always thought about my inflammation and flares as something going wrong in my immune system, rather than thinking about the fact that I have days and sometimes weeks of no inflammation and pain as something going RIGHT! As Prof Emery said – there is something going right in that the inflammatory response switches itself off and I go back to ‘normal’, whereas for someone with RA, the switch is almost permanently set to ON (as I understand it)….

It leads me to think that it’s probably equally important to look at what’s going RIGHT with people with PR as well as what’s going WRONG in order to understand it better and possibly help prevent progression to RA – and maybe even prevent flare ups altogether? I had truly never thought of it like this before.

The second presentation was about the results of research into people who had a diagnosis of PR. The numbers were small – only 58, but the results were still interesting. Of the 58 people, 48% did not (during the time of the study) progress to RA, and 52% of them did. One of the most interesting thing about the findings was that there seemed to be three things that seemed to make it more likely for someone to develop RA (any one of them increases the risk of developing RA, but if someone has all three, that will increase the risks even more).

  • Smoking. I find this particularly interesting. I had never known about a link between RA and smoking, and I can’t give up something I don’t currently do but it could be useful information to PR patients who do smoke as an extra incentive to give up.
  • The intervals between flare ups were smaller in those who progressed than those who did not. Sadly (for me), the intervals between my flare ups can be really short – though they seem to be getting longer since I’ve been following my new regime.
  • Anti-CCP (ti-cyclic citrullinated peptide antibody) – was a big indicator and seemed to be very significant. I can’t remember the figures here, but high levels of Anti-CCP seemed to indicate that people were more likely to progress to RA than those who did not have any or had lower levels.

As Prof Emery said – if we can understand better who is more likely to develop RA, then we can intervene early with treatment in order to perhaps prevent RA developing and joint damage happening in those people.

As soon as I got home, I went to look at my last lot of blood tests to see what mine showed. I couldn’t see whether or not they had tested for Anti-CCP, but on the letter to my GP after my appointment, it said under diagnosis that my CCP antibodies were negative, so they must have tested me for it at some point. I’m not sure how recently that was.

All the presentations were very interesting, but it is a passing comment that Prof Emery made that also piqued my interest from a personal perspective. Just towards the end of the session, one woman in the audience told us how starting to exercise – first by doing swimming and then tai chi – had made a huge difference to her life. Prof Emery responded to this by saying that the immunology of exercise was very interesting and that exercise could make a difference to your immune system, and that further research was needed, but that he believed that it could be an important therapy for RA, possibly improving the immune response.

It made me remember my own experience earlier this year at the bootcamp – how six days of intensive exercise did not exacerbate any pain or flares, but actually made my flare disappear altogether (after a six month almost permanent flare). And it also reinforces my belief that my regular yoga practice and exercise regime (almost daily cycling, plus zumba classes twice a week, sporadic pilates classes and daily home yoga practice) is probably as crucial to my current and future health as any drugs I might be taking.

So, what conclusions can I draw from what I heard today? Well, I’m definitely incredibly happy to know that at least someone finds PR interesting enough to study. However, it’s not likely to make an immediate impact on me or other PR sufferers.

I truly do believe, however, that taking care of my health holistically could be the key (in my case) to managing my symptoms and helping my immune response right itself. In me, this means following my current diet regime, doing lots of stress management (yoga, meditation, exercise), continuing to exercise (not just for the happy and stress-busting impact, but also for the immune system too, as well as helping keep me mobile, supple and build up strength), and managing my energy – resting BEFORE I need to and not overdoing it. Since I have been stricter about this holistic approach to my health, I have had more energy (I am even able to work a full 7 hour day, which would have been unheard of this time last year), fewer severe flares, and more pain-free days. Long may it continue.

Thanks for reading and thanks to the Leeds Musculoskeletal Biomedical Research Unit for having me along today. I apologise if there are any inaccuracies in the blog – I was writing as quickly as I could during the presentations, and so it’s highly possibly that I misunderstood or misinterpreted something!

November News

It’s been a while since I last wrote, and happily, the summer flares that plagued me throughout July and August have subsided, and I’ve had a pretty calm Autumn.

Just after I wrote my last post, I saw a rheumatologist who ordered a whole raft of blood tests – five vials full! I got the results through my GP surgery, but they couldn’t make head nor tail of them as they hadn’t ordered them (!). My vitamin D levels seem pretty low – which given I take supplements AND I had been outdoors a lot in the summer, seems worrying to me. Neither the GP nor the rheumatologist thought it was worth taking any action on. Other levels are mostly normal, except for one marker that the rheumatologist said was consistent with inflammatory arthritis. Clearly, if he isn’t worried, then I shouldn’t be.

The main thing that came out of that appointment was a diagnosis of something new. Fibromyalgia. It was quite upsetting at first – getting a label of another chronic condition on top of the one I already have. Particularly as Fibromyalgia appears to be little understood and some medical professionals don’t even believe in it. But as my mum said, I’m already living with the symptoms, so getting the diagnosis shouldn’t really make much difference, particularly as there aren’t really any decent treatment options that seem to be appropriate for me.

The diagnosis has helped in some ways. It explains why my neck and back can be incredibly painful, despite the amount of physio I’ve had, and regular pilates and yoga that I do. It also explains why, when I don’t do any exercise, I feel like I have fewer spoons (and less energy) than when I do. My funny symptoms – the ones like my skin feeling sunburned or super sensitive, could also be down to fibro. So it’s good to finally get an explanation for that.

Since my last blog, I’ve had gluten twice. Both were small amounts and on both occasions, I was convinced that it would be fine, and it was too little to make a difference. After the first time, I had a three day flare that was pretty bad and painful – more so than anything I’d had for a long while. The day after the second occasion, I felt totally out of spoons and full of brain fog.

Coincidence or caused by the gluten? It’s difficult to know, but both incidences are enough to persuade me that it’s worth staying off gluten. I do feel as if I have more energy without it and I’m still eating healthier.

Since September, I’ve also been doing a daily morning yoga practice (just 15 minutes if I’m short of time, 30 if I’m not) on top of my meditation. The yoga is helping with general stiffness and pain, and is good for my energy levels too. It’s the first thing I do when I wake up, and it’s a great way to start the day. I’ve got a bunch of asanas that I like, but before I felt confident in self-practice, I used some online videos, including some from a website called Do Yoga With Me and the  30-day yoga challenge by Erin Motz

As far as my diet goes, I’ve got even stricter with what I eat and don’t eat. So, as well as totally avoiding gluten, I’m mostly avoiding dairy (mainly having goat’s or sheep’s dairy if I’m going to have any), still largely avoiding refined sugar, – (refined anything actually), avoiding additives and processed food and making as much food from scratch as I can. I don’t eat meat – but that’s not a new thing.

I’ve mainly been following recipes from Honestly Healthy  which recommends an ‘alkaline’ diet (which I guess is what I’m following). I have two Honestly Healthy cookbooks, which are great. I’ve also got a few nice recipes from Deliciously Ella.  Both are good sources of vegetarian, dairy free, gluten and sugar free recipes.

I also went back on a detox retreat, run by Olive in Spain. It was the second time I’d been and was as wonderful as the first time, which I reviewed for Queen of Retreats. I came back bouncing with energy (as I had done the time before).

The retreat reinforced the path I’m currently taking, and so I want to be as disciplined as possible, as far as I can. Hence the ‘mostly’ and the ‘largely’ when it comes to dairy and sugar. It goes without saying that I’m not drinking a lot of alcohol, and I’ve even cut down on coffee. So far, I’m pretty positive. I still get flares but they seem to be shorter lived, and I’m still having long periods of no pain (two weeks and counting currently).  My energy remains pretty good overall too.

The biggest challenge to the whole diet thing remains (as it was in August), eating out. That, and occasions where everyone brings in cake that I can’t eat.  This means that I imagine that the upcoming festive season is going to pose the biggest challenge yet. But I plan on making lots of lovely GF/Vegan/sugar free treats so that I don’t feel too left out.

If you want to know more about the types of food I’m cooking and eating, you can follow me on Instagram where I’ll post occasional photos.

Thanks for reading. : )

Some of the delicious meals served at Olive Retreat

Some of the delicious meals served at Olive Retreat

desserts at Olive Retreat - all sugar, gluten and dairy free.

Desserts at Olive Retreat: Sugar, gluten, dairy free.

National Arthritis Week

It’s National Arthritis Week.

Who do you imagine when you think about someone with arthritis?  I think the stereotype of aged grandmother, white hair and deformed fingers still persists when it comes to this disease. Yet, when I think of all the people I know with one kind of arthritis or another, none of them fit this stereotype.

There’s my great gig- going friend. He’s 50 now, but he has had Psoriatic Arthritis for as long as I’ve known him – which is around 9 years now. He loves music festivals and spends his summers going from festival to festival, stewarding, or litter picking, sleeping in his van. We’ve been going to gigs together now for nearly a decade and when it comes to a ven diagram of our music taste, there is probably a bigger crossover with him than with anyone else I know.  He takes methotrexate, which seems to suit him as he says he has few side effects and it seems to keep his arthritis under control. We rarely talk about the fact that both have some kind of arthritis.

There’s my wonderful campaigner friend down south. She’s about the same age as me and has had her rheumatoid arthritis since she was in her teens I think. She’s active in a range of campaigns, from Reclaim the Night to anti-arms and anti war campaigns, while also working part-time for a charity. I met her through social media and was attracted to her spirited and funny tweets, before meeting her in person and discovering we had many mutual friends.

There’s my best friend, recently diagnosed with osteoarthritis in one (or maybe more?) of her joints. She’s a mum to young twins and works part-time. We met through singing and have spent many an hour chewing the fat, and talking about our lives.  She’s warm and caring and will always listen to me when I need to complain about my lot.

There are other people in my extended social circle – people I don’t know that well personally, but who are friends of friends. The mother at Zumba, who no longer comes, who was diagnosed with an unknown type of inflammatory arthritis, possibly reactive arthritis. She was always at the front of the class, dancing as if no one was watching her. The last time I saw her she told me she was still getting occasional flares but trying her best to keep up with her yoga practice which she felt was really helping her.

There’s editor and writer, who I recently discovered also has palindromic rheumatism. She keeps hers under control with diet, yoga and meditation.

There’s the 40 year old friend of a friend, whose recent flares sound remarkably similar to the onset of my PR and who has yet to have a firm diagnosis. She’s finding it all quite weird and frightening and can’t quite get her head round the fact that she can be in absolute agony for 36 hours as if she’s severely injured herself, and then it can disappear completely as if it had never been there. 9 years after the onset of my PR, I tell her that I can barely get my head round that too!

Then there’s all the different people on the social media sites that also have some kind of arthritis. They range in age, personality type, country of origin and attitude towards their illness. Some are determined to ‘fight’ this disease and carry on as if it did not exist at all. Some are determined to find a dietary route to keep it under control. Some prefer to control it using prescription drugs of one kind or another. Others are determined not to let any chemicals enter their body.

And then there’s me. 43 year old writer of blogs (and other things). I’ve now had PR so long that it has become a part of my identity – for better or for worse. I’ve given up fighting it and accept that it will do what it will do. Mostly, it doesn’t do too much damage. I don’t get as angry at it any more, though it can still frustrate me. I don’t think I control it in any way, but I live with it as best I can, eating as healthily as I can, meditating daily (still!) and trying to balance my life and my energies.

Arthritis deserves a new image. One that acknowledges the fact that it is actually a broad umbrella term for a range of different joint conditions and one that acknowledges that the people who are afflicted with it may only have two things in common: the fact that they are human beings, and the fact that they have a diagnosis of arthritis. You can’t always tell by looking, that’s for sure.

In my opinion there still needs to be more education, MUCH more research and, given the most recent comments on my blog about unsympathetic medical professionals, much more compassion towards people with arthritis. We live amongst you!

Links:

Daunted by new drug regime

I saw my consultant two weeks ago and he decided to follow the pain management clinic’s advice, which is to recommend that I try taking a drug called Gabapentin instead of moving onto Methotrexate. Gabapentin is not a ‘disease modifier’ drug, but one which is supposed to specifically target the pain and flare ups (rather than the causes of them). Right after seeing the consultant, I came down with a virus so I wanted to wait til I was completely over it before starting on a new drug regime.

So, today is day 1 of taking Gabapentin. As always, when I am taking new drugs, I’m pretty nervous about the potential side effects. As ever, I’ve made the mistake of reading the list on the leaflet. Feeling drowsy and tired are the most common – as if I need drugs to make me feel any more tired! Other side effects include anger towards others, confusion, mood changes, depression, anxiety, nervousness and difficulty with thinking.  Hmmmm. Not particularly appealing given my history of depression. Joint pains are another ‘common’ side effect to look for!

What if I’m one of the unlucky few who get these side effects? Does that’ll mean I have those symptoms TWICE as much as before?!

I have to gradually build up the dose of this drug, so I think it’ll take about a week to know if I’m getting any side effects, perhaps a little longer. I’ve have had a few flare ups in the last couple of weeks, so I guess if I’m pain free for a while, then it might be working – but we still have the usual “is it working or is it just a mild period” question.  I am also enlisting the help of my boyfriend so that he can judge whether I’m any more dopey and fatigued than usual!

On another tack, I discovered that the NHS is now no longer approving prescriptions of three months at a time. Which means that I have to get a new prescription for my hydroxychloraquine every two months instead of three (and this drug too, if it works). Which therefore means that having Palindromic Rheumatism just got more expensive.

A doozy of a flare-up

So, it seems that I spoke too soon last week, as pretty much, the afternoon after writing that blog, a nice old flare up started to creep up on me. It wasn’t too bad at that point – creeping into my hands for most of the weekend, making them stiff and sore. However, on Sunday my knee got pretty bad. I wondered if I’d done something during a home pilates workout the day before – perhaps I’d pulled something when I was doing a stretch? By Sunday night, going up and down stairs was getting too difficult  and so once I’d gone up to bed early evening, I stayed there.

By Monday morning the knee pain was all gone. So not an injury then but part of the flare up. No pain for the rest of that day until…. until I got home late that night. I’d gone over to Leeds to see one of my favourite bands of the moment with a few friends. We’d got back into Manchester at 11.30 and by 12, I was already in bed, having shelled out for a taxi home from the station. The knee pain was creeping back on, but I stupidly thought that it would be fine as I’d sleep it off as I had done on Sunday.

It was not to be. The pain creeped up and up on me in the knee, my hip and in my hands and fingers until it was louder than my urge to sleep. I lay in bed, dozing off and on and listening to my audio book of the moment (Bill Bryson’s Notes from a Small Island) and praying for sleep. By 5am, I realised that I was no longer half awake but properly awake and I made myself hobble out of bed and get a heat patch to put onto my pyjama bottoms to try and bring some relief to the poor knee. By the morning, the pain was still pretty severe. Walking was pretty difficult and some of my fingers were swollen too. There was no way I was going to get downstairs, so I was particularly thankful that my partner (recovering from a heavy cold) was well enough to bring my breakfast up for me.

I was supposed to go back to my expert patient programme but there was no way I was physically or emotionally up to it. I’m always a little emotionally fragile during a bad attack, even more so when I’m also hormonal AND haven’t slept. So when I realised that I was not mobile enough to go to zumba, I just burst into tears!

I spent the morning in bed, feeling a little sorry for myself, but mainly being pissed off at missing my dose of happy through Zumba. The attack started to ease off at around lunchtime and by the afternoon I was able to cycle (it was easier on my knees than walking) and visit a friend, bringing along copious amounts of cake with me. By the evening, the pain was all gone, and all I was left with was exhaustion from not having slept the night before.

As I write, it’s now Thursday and I’m pain free again. Seven years into this condition and I still get surprised at how rapidly a flare can come on, and how rapidly (relatively) it can completely disappear again. The other thing this flare highlighted is how useless most of the painkillers are. I have been prescribed Naproxen, but you’re supposed to take it with food. Pretty useless if an attack starts in the middle of the night. Mind you, when I have tried taking them with food, they didn’t do much anyway.

I’m not too disheartened by this week’s flare. It only really left me incapacitated for one day, which on the scale of things isn’t too bad. I just wish it hadn’t been my zumba day! Next time it strikes, I hope that its timing will be better!

A good week

Following last week’s emotionally difficult week, this week has been remarkably stable and even. Amazingly, I’ve had no pain at all for almost five days now, and relatively good energy levels. I’ve not even had to take any time off ‘sick’ from my work, which is the first time that’s happened for a long while. Usually, I have at least half a day or a day in bed due to fatigue or pain each week. My last flare up was at the weekend, and although it cut short an evening out, it wasn’t too debilitating for long.

It’s tempting, when things are going well, to look for reasons why. Just as it’s tempting, when things are going badly, to look for a reason. This week, I’ve planned and managed my time well. I’ve done lots of exercise – three zumba classes and I’ve cycled most days. I’ve also rested – though I’ve also done a lot of activity too. It could be down to all of those things, some of them or none of them! It could be something to do with what I’ve eaten this week. Or it might not. It could be that the antibiotics are working. But then again, it could just be a coincidence. The thing is, it’s always impossible to tell. So, instead of looking for reasons, I have to keep reminding myself just to be grateful and happy that I’ve had a ‘good’ week and not to worry too much about whether I’m going to ‘pay’ for it next week.

Continue reading