Category Archives: gluten-free

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.

 

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Trying something new

After 12 years of living with palindromic rheumatism and experimenting with various lifestyle and dietary changes I’ve made the decision to start taking new medication in addition to the hydroxychloraquine that I already take.

Doing yoga and avoiding gluten and eating healthily has served me pretty well. But it has not cured me. I am still flaring. I am still fatigued. And I am still none the wiser as to what triggers a flare, or what will make it go away once it’s there.

I’ve resisted taking methotrexate for a long time. The side effects looked too scary, and I kept reasoning that as I was generally coping with my arthritis, there was little point in putting these scary drugs into my body.

But sometime over the last twelve months, my perspective has shifted a little. I experienced a three month wrist flare in the winter which led to a lot of stress and worry that permanent damage was likely. I’ve had scans and x-rays and luckily, that’s not the case. But even so, living with that constant flare for three months really did interfere with my quality of life and ability to do some of the simplest tasks. My yoga practise suffered too.

On top of that, the unpredictability of flares, and an extremely severe shoulder flare a couple of months ago made me think “You know what – you don’t have to live like this” and decide that it was time to try something new. I felt like a failure at first and had to work through a few feelings around that, and the fear that comes with starting something new and potentially as damaging to my health as the arthritis itself. But I reasoned – if there’s a problem, I come off it. If the side effects are horrible, I come off it. If there’s no change. I come off it. I’ll be no worse off than I am now.

As well as the fear, there’s positive emotions as well. The fact that methotrexate DOES work for a lot of people gives me some hope. I know people taking it with no side effects at all. And the idea of being pain and flare free, even if it only works for twelve months, is extremely appealing.

I started my first dose on Sunday, and will be taking folic acid four days later. I will be closely monitored at first (blood tests every two weeks) and will be careful to stay away from people with horrible infectious diseases as I will be more likely to catch infections and illnesses as a result of the drug.

I’ve been told that it will take around three months to know if it’s working, so for now, it’s a waiting game. I wait to see if there’ll be side effects and I wait to see if it’s going to work. In the meantime, I continue with the lifestyle changes that I know help me, even if they don’t cure me.

2014 – a Summary

It’s the penultimate day of 2014, which seems as good a day as any to look back over 2014.

I’ve been using the Rheumatrack App on my phone since October 2013, which means that, for the first time ever, I can look back on the year and have a realistic idea of how much PR has affected me.

The good thing about using an app like this is that you can export all the data – within a specified time frame – as a file, so it means I can get a good overview and even do a little bit of analysis.

On the app, I record my pain on a scale of 0 – 100. I also record where in the body I’m in pain and sometimes I add notes too. Most days, I enter the data in the early evening, but sometimes, if the pain changes (dramatically increases or decreases) there will be multiple entries on the same day.  I record something even if there is so flaring at all.

The year in Numbers

So, time for some geekery as I look at 2014 in numbers. There were 355 entries in total.

  • 173 records out of 355 were COMPLETELY PAIN FREE! That’s almost half!  (48%). I’m pretty sure that is higher than it would have been in previous years.
  • 89 of the records were values of 30 or less. That means that for a quarter of the time, I am not in much pain at all.

Adding them both up, this means, that ¾ of the time, I’ve been in no or neglible pain. I’d say that was a pretty good result.

  • I had NO flare ups where the pain was higher than 85 (it’s at about 80 and above that I am crying in pain and can’t really function well at all) and only 24 days where the pain was higher than 65/100. this is only 6% of the time.
  • Which leaves 21% of the time – (1/5th) I was in some sort of uncomfortable pain, but could still function.

I had the longest run of pain in the early part of the year while there was a lot of stress going on in the house due to building work: 42 entries over February 14th til the 25th March. I had a long run again in the summer – 27 entries 19th July – 14th August. I wasn’t particularly stressed and can’t pinpoint anything to that particular run.

I had quite a few nice spells with no pain at all, with the longest being 17 completely pain free days in a row in May (4th til 22nd). This was also during and straight after my detox retreat in Spain. This may or may not be a coincidence.

Where do you flare?

Most of the flares in the early part of the year were persistent in my elbow and shoulder. Most common areas for flares continue to be somewhere on the hand – wrist, base of the thumb, or any of the finger joints. My toes are rarely afflicted, but they have flared once or twice. I had a jaw flare twice. My knees have been troubling me off and on, but it seems that this may be down to tendonitis. I’m waiting for a physio appointment to assess this further

What I have not recorded in the app much is my fatigue or energy levels. I have three days of note where I was completely incapacited with fatigue.

Diet stuff

Overall, I do feel healthier at the moment, despite flaring from time to time. My energy seems more manageable, my mood more stable and my ability to cope with my PR much higher than it has ever been. I’ve been gluten-free since April and have been sticking to a fairly ‘clean’ alkaline type diet about 80% of the time. I notice that when I eat more sugary things, my mood and energy levels are both affected. I’m pretty committed to this new way of eating – which is just a stricter and healthier version of the mostly vegetarian diet I had already been following. But now, I eat less dairy, no gluten, and cook a lot more from scratch than ever before.

What about exercise?

I have done very very well when it comes to exercise this past year. I have definitely found that a daily morning yoga practice with my energy levels, as well as alleviating the morning muscular aches and pains I have, possibly from the fibromyalgia. I did an amazing fitness bootcamp in March and completely surprised myself with what my body could handle. And I have continued to fit in various exercise classes into my working week. In May, I got a new job working for Manchester Mind, and I enjoy it a lot. What’s also great is that I am able to fit in my lifestyle around it – continuing with my twice weekly zumba classes and working my hours over 3 days instead of 2 1/2. As part of the job, I had to visit a lot of people around Manchester and so over the summer, cycled about 70 miles a month JUST FOR WORK!  I also did a 26- mile sponsored cycle ride and raised over £400 for Refugee Action.

Since I decided to prioritise my yoga practice first thing, my meditation practice has taken a bit of a back seat. There isn’t enough time to fit in both yoga and meditation every day in the morning, so in the days when I’ve not been able to do both, I tend to meditate right before sleeping.

Looking after my Mind is important too

During 2014, I also learned to lead others in meditation on the Breathworks course learning to teach Mindfulness for Health. I felt hugely self-conscious the first time I led a meditation. Previously I’d just read it off a script or played something on the Ipad when I’d led meditations before. I still feel a little self-conscious, but I’m getting more confident simultaneously meditating and leading. I also got such great feedback on the last course I ran (I run 6-week long stress management and emotional wellbeing courses for people with diabetes and heart disease) that my confidence has really been boosted in that area. My meditation practice has really been life changing and it really does help me cope when things are tough.

Looking ahead

I’ve got a bunch of goals and hopes for 2015, but my main one is to continue with everything I’ve been doing that helps my health – so that means sticking with the alkaline diet, keeping exercising and doing yoga as well as meditating too. I have two yoga retreats booked – a weekend one in March, and a week-long retreat in Morocco in May, which I’m very much looking forward to.

Of course, one of my hopes is that there will be many pain-free days ahead, and fewer ones full of pain, but at the end of the day, that is something that I’m not completely in control of. I really hope that sticking with my healthy lifestyle over a long period of time might mean fewer and fewer flares. I can live in hope. But I also know that my healthy lifestyle helps me cope better with pain and fatigue so even if it doesn’t ‘cure’ me, it certainly helps me live better and be happier.

Happy 2015! Thank you for reading.

 

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.

Reporting back on my gluten free experiment

Reporting Back

The last time I blogged back in April, I was about to give up gluten, cautiously optimistic that it might improve the severity or duration of my flares. For about two months, I was practically pain free. I had continuous runs of days with no pain or flares or fatigue at all. I even had a full 18 day pain free run – the longest that I can remember for quite a while. I had good energy and when I did flare, it was short lived and generally mild.

I was strict with the no-gluten thing, and gleefully filled out my pain record app with 0 pain and 0 joints flaring more times than I had done since I’d started keeping records in September last year. I thought I had it cracked. Finally, after 10 years of not knowing what causes my flare ups, I thought I might have worked out a cause. And so that’s what I cautiously told people, that I may have cracked it. It felt like a major achievement. A eureka moment. A miracle. If only I’d known this years ago, I said.

And then… the flares resumed. Sometime, around mid June, my joints started complaining again. As before, there appeared to be no pattern. It felt as though my body was playing games with me. Flaring in a toe one day, my elbow the next, hopping from joint to joint, varying in its severity and length of time in each joint. I woke up every day, trying to guess where it would land today, and wondering how bad it was going to be. It felt like the arthritis was taunting me. “You thought I’d gone away” it seemed to say “but really, I was just sleeping for a while. Taking a rest. Now, where shall I hang out today? Shoulder? Maybe. Little Finger. No. Too insignificant. Wrist? Yes, why not? Not been there in a few days.” 

Still, there were pain-free days – sometimes as many as three in a row. But over the last month, there have only been four of those, and again the balance is tipped again, with pain and flares being the norm, rather than no-pain. 

Yet, I’ve continued to the no gluten diet. And it’s been a pretty healthy way to live overall. I’ve eaten way more fresh fruit and vegetables than I ever did when I did eat gluten, and avoided lots of sugary treats. I’ve got pretty inventive and imaginative in the kitchen, and have enjoyed making sugar-free, gluten free and vegan treats such as courgette and apple muffins, or brazil nut cookies from my Honestly Healthy cookbook.

So, here’s what I’ve concluded of my gluten free experiment.

  • My energy and fatigue has certainly still been better OFF the gluten than on it, even once the flares returned.
  • Eating out as a non-meat eating, dairy avoiding gluten free person is a nightmare and minefield.
  • I am using a lot of almond flour and dates in home-made treats
  • I’m eating WAY more salads, vegetables and fruit than I ever used to, and this is probably a Good Thing
  • I’m eating a much more varied diet too – eating lots of different salads for lunch instead of resorting to cheese on toast, or a cheese sandwich
  • Store-bought gluten free bread is rubbish and not really a real replacement for a decent healthy wholemeal, granary loaf.
  • Eating on the go is almost impossible. I’ve had to be prepared and bring lunches with me whenever I can, and things to snack on.
  • I’ve enjoyed being prepared – making gluten free pancakes on a Sunday to last the week, or sugar-free snacks to take to work (I have a new job).
  • I have NO idea whether my two pain free months which coincided with giving up gluten were a complete co-incidence or directly related to the giving up of gluten

So, I’ve decided to keep up the gluten free diet for a while longer. I think it’s better for me, I think it’s good for my energy, and if it isn’t the only cause of my flare ups, it could well still be a contributory factor. As long as I can eat a healthy, varied and balanced diet without gluten, I think I’ll continue.

I am going back to the rheumatologist at the end of the week. The last blood tests were clear, indicating that I’ve not yet progressed to rheumatoid arthritis. Not sure whether to try a different lot of ‘disease-modifying drugs’ (I’m still on hydroxychloraquine) in the hope that they will silence the flare ups more permanently. The trouble is, these drugs come with so many side effects (plus regular blood tests) that I am scared to try them. I spend so much time and energy not putting chemicals and horrible stuff into my body by eating healthily, do I really want to take a rather toxic drug? If it ‘cures’ the flare ups, will it be worth it? I can’t even be sure it’ll definitely work. So, I’ll probably put it off for yet another year, or until I can’t bear the flares any longer.

And the truth is, while the pain is a pain, I’m still functioning. I’m still working. I’m still pretty happy. I feel mostly good. I’ve faced the disappointment of the returning flares, and grieved for the pain-free days. I’ve had to re-realise that I can’t control my flares or my arthritis – no matter how hard I might try or how much I want to. And so if I have to live with it, I’d rather do all I can to stay well and healthy with it. 

Going gluten free

On the palindromic rheumatism facebook group, there are often posts from people wondering whether there is any link between diet and their symptoms. I’ve written about this before, and have never really been convinced that my flare ups relate to any particular food or food groups. I tried keeping a food diary, but there was no conclusive results in two months and so I just stopped doing it as it got really tedious! Eighteen months ago I drastically cut down on sugar, in the hope that it could be a culprit. It sort of helped my energy levels a little, but I didn’t think that it was a cause of any flares.

Yet on the facebook group, a number of people DO seem to feel that some foods do trigger their symptoms, though the foods themselves are not the same for everyone. Variously, they single out gluten, sugar, MSG, artificial sweeteners, tomatoes, and processed foods. Meanwhile, plenty of well-meaning people continue to advise me to give up various different foods, convinced that they are the cause of arthritic symptoms.  There also seem to be lots of people online talking about following an alkaline diet or the ‘paleo’ diet. I’m not so sure myself. The paleo diet seems to be very meat-based and as I haven’t eaten meat since 1990, it’s not something that appeals!

One of the things that comes up a LOT when people talk about diet and arthritis is avoiding gluten. But I’ve been quite resistant to giving it up. After all, gluten is in lots of foods, and I do really love bread and toast and so I’ve never really given it a go. I already avoid sugar, meat, various dairy products and follow a low-GI diet as much as I can. Do I really want to cut out another food group?

And yet…

When I was at the Apples & Pears fitness bootcamp, my symptoms completely disappeared. Even the flares that had been ‘stuck’ in joints for weeks and months went away. Part of me is convinced that this is down to the exercise getting rid of all the stress that had built up in my body after a bereavement and having builders in the house. But another part of me also wonders – could it be down to the fact that my gluten intake during that week was very low? Or could it be a combination of the two?

Even more confusingly, when I got home, I flared up within 24 hours of getting back. It could have be the stress of being back in a builder-infested house. Or, it could have been the slices of toast that I had the evening I arrived home.  So, I decided to cut out gluten and see what happens.

It’s been ten days now since those slices of toast. The returning home flare-up disappeared soon afterwards, and I have had quite a few more pain-free days with only very mild flare ups in my fingers after a very long day at work. It’s too early to draw any real conclusions. I’m going to have to stick with it for a couple of months and monitor symptoms during that time. If I haven’t flared by then, I’ll try reintroducing gluten and see whether it triggers anything.

Justin, my partner, reflected that this whole process was a win/win situation. Either gluten triggers my symptoms – in which case, I can control (to some extent) my condition by avoiding it. OR it doesn’t. In which case I can have toast and bread again! 🙂 Either way I win.

I am using rheumatrack, an app, to monitor my symptoms, so I will have something concrete to refer to at the end of the experiment.

So far, I haven’t found it too tricky, but I imagine it will get harder as time goes on. I know I’m going to have to be more prepared with my lunches and bringing food to events with me. Any suggestions, advice or good gluten free recipes welcome!

I promise to report back.