Category: Rhumatology | Living with Spondyloarthritis

A new F-word: FASTING – Love or Hate?

Next week is Ash Wednesday when the Christian fasting period called Lent begins. I’ve never fasted. It always seemed rather uncomfortable and difficult. Until now I couldn‘t see any benefit and feel that managing AS I have enough to do.

The more I read and try things out, the more convinced I am that diet is important to my condition. We know that AS is about 95% hereditary, so I couldn’t have stopped it breaking out. But what I eat can maybe influence the progress of the disease, and most importantly how I feel on a day to day basis. A good diet should also help to keep other health issues at bay, which result from chronic inflammation.

But not eating at all?! NOT TOO SURE THAT I WANT TO STOP EATING ENTIRELY!

Beautiful organic lettuce — I love my lettuces – this one was grown organically in my garden!

So what is fasting all about?! HERE IS WHAT I FOUND OUT

The first thing I found out is that I could fast in many different ways. I could not eat for just 8-12 hours, which is called “interval fasting” and seems the same as eating early in the evening; or fast for perhaps as long as 3 weeks. I could eat nothing at all, or just limit my diet, for instance to juices or fruits.

The second thing that I realised is that not only Christians of practically all denominations, but also every other leading wisdom tradition, such as Hindus, Muslims, Buddhists, Jews, observe fasting at certain ceremonies or times of the year. These are traditions which have held for thousands of years, and are based on collective and accumulated knowledge. Such customs are a spiritual practice but also often developed for practical reasons. In Western Europe before global trade and industrial greenhouses, food was getting scarse by Spring, so there were good reasons to eat less! But maybe there were health reasons for these practices too, which could not be scientifically proved, but were observed. The ancient Greeks believed in fasting. Indeed Hippocrates is quoted as saying: “Instead of using medicine, rather, fast a day.”

The third thing I found is that Western medicine does not advise fasting, particularly for people who suffer from serious chronic disease. The fasting article in Wikipedia discusses fasting in religious practice at great length. Medical applications are referred to only with reference to fasting before surgery or medical tests.

Alternative medicine gets a one liner in Wikipedia: “Although practitioners of alternative medicine promote “cleansing the body” through fasting, the concept is quackery with no scientific basis for its rationale or efficacy.”

But the fourth thing is that I found an article on the effects of fasting on rheumatoid arthritis in the renowned medical journal “The Lancet” in 1991. Its conclusion is: “Fasting is an effective treatment for rheumatoid arthritis, but most patients relapse on reintroduction of food.” But then, after 7-10 days fasting, patients were put on gluten-free vegan and then lactovegetarian diets. A control group ate an ordinary diet. The final result: “The benefits in the diet group were still present after one year, and evaluation of the whole course showed significant advantages for the diet group in all measured indices. This dietary regimen seems to be a useful supplement to conventional medical treatment of rheumatoid arthritis.”

Has this research on rheumatoid arthritis (RA) been followed up? Yes, a bit! I found an interesting article from 2014 called “Fasting: Molecular Mechanisms and Clinical Applications“, which states that the positive effects of fasting on RA have been supported by four differently controlled studies. The authors write: “..for many [RA] patients able and willing to endure long-term fasting and to permanently modify their diet, fasting cycles would have the potential not only to augment but also to replace existing medical treatments.”

Is fasting really “quackery” as Wikipedia claims, or has not enough research been done to establish its value? And what about the effects on AS?

My fifth thought comes from new knowledge gained in basic medical research. A process which might have played a key role in the positive effects of fasting for patients with rheumatoid arthritis is Autophagy. This is a sort of automatic biological cleaning programme. The removal of waste products and old debris is essential for the cellular and organic fitness of any living organism. Autophagy describes a fundamental process to degrade and recycle old cells, and then use them for new purposes or as a source of energy. Yoshinori Ohsumi who discovered the processes and elucidated the basic mechanisms of how autophagy works, was awarded the Nobel Prize for Medicine in 2016 for his work.

Autophagy, as a recycling and cleaning act, is essential in many physiological processes. It is triggered by the need to adapt to a lack of food caused by starvation or intentional fasting, but it is also a response to infection. Furthermore, it is now known that mutations in autophagy genes can cause disease, and that the autophagic process is involved in several conditions including arthritis, cancer and neurodegenerative diseases. But nobody yet understands how.So perhaps the view of fasting will change in the next years. More research is needed to understand autophagy and how exactly it may be connected to arthritis. We might find out that autophagy could contribute to the treatment of diseases, perhaps even by fasting!

What keeps me healthy?

In Switzerland we believe that foxes are clever. Near the village where I live there is a family of foxes living on the border between the woods and a corn field, and in Spring the young foxes come out and play in the evenings. Last year I managed to get a picture, which I’d like to use as my feature picture for this first blog about being clever and keeping healthy.

Being and keeping healthy is the most precious, valuable thing that I can think of. But let’s be honest – a lot about keeping healthy is luck, or maybe it’s more scientific to say that it’s about genes. So does it pay off to live healthily? I see a lot people around me who – how can I put it? – seem to ask a lot of their bodies. But they still seem to be very bright and cheerful, hold down a job and earn enough, have an intact family – in all, manage their lives quite successfully.

Much of my adult life I didn’t feel very well, I was exhausted, or had pains. Despite living my life a in very “healthy” way, I was often ill. Shortly before I started on the treatment with TNF alpha blockers in 2015, I couldn’t “tick off” any of the above life successes. I wonder what my life would have looked like if I’d lived like Winston Churchill, for instance? He began the day with whisky or brandy, and ended it with the same. In between he was very fond of Champagne and of course “Churchill Martinis” which is essentially a glass of gin. He liked good and large quantities of food as well, and is estimated to have smoked or chewed his way through 200’000 cigars. He didn’t think much of sport either, and lived to be 91. I would feel just awful, if I’d lived like that. How did he do it? Genes were probably pretty important.

But if your genes have passed you a disease like AS, or any other chronic ailment. It’s probably a good idea to live as healthily as possible. It should improve the quality of life, as long as you have it, and maybe give you some extra time as well. I believe that my health depends on the medication I take, on what I do for my body, on what I eat and drink, how well I can keep stress out of my life, and how much beauty and joy I manage to keep in. That’s 5 things. In the next blogs I will address each of these five factors and reflect on how I bring them into my life. In a sixth blog I will make a guess about how much each factor contributes to my total well-being.

I’m looking forward to it, and hope to learn from the experience, and maybe give others some ideas as well.

It’s snowing outside, but Spring will come again. I leave you with a picture of the woods and the fields where the clever foxes play.

View of poppies and Swiss mountains in summer

Fatigue, Friends and other F-words

It’s been so long since my last blog. What happened to my intention to write every two weeks? What’s being going on? Well, I’ve been busy – read on and find out! – and if I’ve not been busy, I’ve been exhausted and dragging myself from one task to the next.

Those who suffer from an autoimmune disease know about Fatigue. It’s one of the first symptoms, and a common one, whether you have rheumatoid arthritis, diabetes, psoriasis, alopecia, lupus, thyroid disease, Addison’s disease, pernicious anaemia, celiac disease, multiple sclerosis, crohns disease, or ankylosing spondylitis as I do. The body is spending lots of energy fighting itself. That makes you tired. It’s a tiredness that is not fully relieved by sleep – at least that is my experience – you just feel completed wasted during such periods. Apart from slowing down, being careful what I eat, being nice and understanding and compassionate to myself, trying to reduce stress, I don’t really know what better I can do. Depending on the disease, you may also be in constant pain. In fact, many autoimmune diseases cause joint or muscle pain, not just rheumatic ones. Other general symptoms, which I have all experienced, are general muscle weakness, rashes, low-grade fever, trouble concentrating, or weight loss.

The doctor that diagnosed osteopenia (a kind of halfway house to osteoporosis) when I was 45 years old, felt that there was something not right about my health, but did not know what. There aren’t doctors called autoimmunologists, who specialise in autoimmune diseases. Depending on your symptoms you might first go to an internist or rheumatologist or endocrinologist or ophthalmologist or dermatologist. I went to quite of a few of these specialists, and also to an orthopaedist during the 30 years until I got a diagnosis, but nobody was able to join the dots. In medical research the link between different autoimmune diseases is well recognised and diseases are often approached as a common group, but no clinical practitioner was able to make the link between my various complaints. I’m not a victim of a sequence of rare errors. My case is typical. I know of many other sufferers of ankylosing spondylitis, who were not diagnosed for years, if not decades.

It’s so good to have Friends, especially those dear ones, who I can tell when I’m exhausted and hurting; and who can forgive me and still love me, if I’m grumpy, bad tempered, and a bit down. My advice, which I try to follow myself: if you have an autoimmune disease and Friends, join the dots. Let them know how you are feeling, when things get tough, because we often look better than we feel. That’s what Friends are for.

But enough complaining. Why was I tired? Part of the reason is that this blog and the other media that it attracted, also led to the opportunity to talk about my mountain tour and the need for more Arthritis research at TEDx Zürich. So I had this amazing opportunity to tell the world of my mission to fundraise for more Arthritis research. I worked for weeks on the content, practised every sentence of the presentation for hours, learned my talk off by heart, which took forever. I gave my talk to Friends, in fact anybody willing to listen – and I owe a huge thank you to all those who supported me.

Judith Safford speaking at TEDx Zürich — Telling my story at TEDx Zürich

TEDx Zürich Judith Safford — Speaking from my heart

On the day, things finally came together. I seems like the first time that I got the talk right and didn’t forget anything, was when it really mattered. It was a wonderful experience, especially after I’d survived the nervousness before. In all, it was Fantastic.

At the party afterwards, I celebrated with my kids – that’s them in the picture below – and met many really kind and inspiring and interesting people. The TED talk will go online in a couple months. Until then, I’m able to relax, recuperate and write another blog.

Thanks for reading!

TEDx Zürich Judith Safford after the talk — Photo session with my kids after my TED talk

How it all started

There are big unforeseen events in our lives that we never forget. Do you remember what you were doing when you heard about 9/11, when John Lennon or Ueli Steck died? In the same way, I bet everyone with Spondyloarthritis or other nasty diseases remembers when they got the diagnosis, and learnt that the cause of their symptoms has a name.

I can also remember my first attack of strange low backache very clearly. I was 24 years old. At the time, I couldn’t have known that this backache would become important, and yet intuitively I sensed its significance. I was a student and had just got a fantastic Summer Job looking after 3 race horses. I remember taking a hot bath and willing with all my strength that the pain should go away. It did – for a while.

Equestrian riding contest in Southern Germany Judith Safford — Equestrian contest in Southern Germany

However, from that point on the pain kept coming back. My whole adult life was plagued by phases of severe back- and neckache and stiffness. I often felt totally exhausted and was frequently ill. Sometimes doctors found something wrong with me. Mostly the symptoms went away for a bit by themselves, and I got on with life. The good times often lasted a year or two.

Diagnosis

Now fast forward 31 years to the day I got the diagnosis at the age of 55 that I had axial Spondyloarthritis (AS), an incurable rheumatic disease. Of course, it was a life-changing event; finally, I had an explanation. Answering the questionnaire at the Rheumatologists was almost surreal. The questions exactly fitted me! I felt enormous relief that my suffering had a name. I felt amazement at how I had managed so long. I felt bitterness at doctors who over the years had told me that I had a curved spine, too heavy periods or psychosomatic problems. I felt shame that I hadn’t thought of it myself. My grandfather had AS, as does my brother, but I’d been told many years ago that women don’t get AS, and had never questioned that information. Finally, I felt sadness and fear. AS is an autoimmune rheumatic disease, which means that my own immune system attacks me and makes me ill. Therefore, a cure is very difficult, if not impossible. I read horror stories about it on the internet, and dry medical summaries about the difficulties of treatment and possible development. My grandfather died young, and I’d seen my brother’s years of suffering. How was I going to manage?

I asked my Rheumatologist if he could be mistaken. He said there was no other disease that caused the changes to my spine that he could see on the MRI. So, Spondyloarthritis was a part of me. A part that I really thought I didn’t want. I couldn’t see any good in having AS at all.

The big flare-up

The diagnosis coincided with a big flare up. I was in unrelenting pain, could hardly walk when I got up in the morning, and spent nearly an hour doing exercises to reduce the stiffness. The rest of the day it felt like walking through deep mud. The exhaustion – “fatigue” as it’s called – of an autoimmune disorder is hard to describe. I often had this overwhelming desire just to lie down exactly where I was, close my eyes and switch off. I wonder if people noticed. I think they did. Sometimes I still want to contact such people, and explain. “Sorry that I acted so uninterested in you that day, sorry that I didn’t really engage with you, please don’t take it personally!”

The big flare up was probably partly caused by stress. Life had been horrible in the year preceding diagnosis, both professionally and personally. The pain and exhaustion were never ending and instead of going away again, as my symptoms always had in the past, they just got worse and worse. I lost my job and felt as if I was fading out of life.

Like most rheumatic diseases Spondyloarthritis is not fully understood and there is certainly no cure at present. But there are now some treatments that improve life for many people. My rheumatologist suggested that I try one: a medication called a TNF inhibitor. It helps the majority of patients. Given regularly by infusion or injection it would suppress my immune system, thus stopping my body from attacking itself and making me ill. But, doesn’t the immune system have a rather important function, which I need? This treatment would be backed up by a weekly injection of a medication mainly known for its use in Chemotherapy. Won’t my hair fall out?

I looked on the internet again and scrolled through pages of side effects and warnings. Long term effects? Unknown. I was already taking 12 different sorts of pills, mainly painkillers, but also treatment for loss of bone density, a fungal infection, some alternative medication and some pills to reduce the side effects of other medication. These new drugs didn’t seem appealing at all. So, I said no to more medication. I had been doing yoga in the morning for 30 years already, because it loosened me up. I had practised a lot of sport. I meditated to reduce stress. I ate very healthily. Now I would be even more disciplined about sport and eating and sleeping and stress reduction. I would get back control of my body without putting more poison into it.

That’s what I thought. But this time, it just didn’t work. It didn’t matter what I did, I just got thinner, and weaker. The only real pain relief was opiates, which made me feel blurrily nice, but like a zombie. I took them in the evening, lay down on the sofa in despair in front of the TV.

The turning point

As winter came, weighing 49 kg and totally consumed by never-ending pain, I gave in. OK, let’s give the immunosuppressant a try. I wanted to go to London and visit my family at Christmas and hoped that I could start treatment before the trip. I was very disappointed that this didn’t look possible. A range of check-ups were needed before treatment could begin. Firstly, there were some inoculations to do. Then there were checks that I didn’t have a form of hidden TB. I had travelled to East Africa the year before. So, the doctor made sure that I wasn’t carrying some nasty disease from there. My dentist decided to take two teeth out that might go bad and get infected. The whole procedure took several weeks and I was very tense during this period, but thanks to the doctors’ effort, it was just possible to fit in my first treatment before Christmas, on the 23^rd December. Phew!

It went fine. The staff at the hospital looked after me wonderfully. They even gave me tea with real milk. A rare treat in Switzerland, where tea is generally served with cream. You probably think I’m nuts, but details mattered. I really liked that.

I didn’t feel any different immediately, but that’s normal. Everybody reacts differently to the treatment. Some people take up to 6 weeks to feel the effects. And sadly, for quite a few people it doesn’t work at all.

Happy Christmas!

But at my mum’s house in London I slept very badly. The mattress was old and lumpy. In England, we celebrate Christmas on the 25^th but I woke that day feeling like I’d spent the night in a tumble dryer.

Judith Safford in London park — First days after treatment

My mum loves to go to the Church service on Christmas Day. We walked together very slowly and stiffly to the Church. And that was the amazing thing: I was stiff, but the pain had receded and I could walk those 300 meters! The congregation sang the old Christmas Carols from my childhood and I cried my eyes out through the whole service. I felt properly alive for the first time in months. My own personal miracle had happened.

The next day we walked to the park. Every day on that London trip I could walk a bit further. I started doing some simple yoga exercises in the morning. For months, I been telling myself that I was not my body, because my body gave me nothing but pain and misery. Now within days of the infusion, I was walking with a level of discomfort which painkillers could now control. I was starting to enjoy life again.

Where do I go from here?

In the months that followed, I slowly weaned myself from NSAIDs (Nonsteroidal anti-inflammatory drugs) and other painkillers. But I still had a lot to do to pick up my life again. And new things to think about. If Spondyloarthritis is incurable, what does that mean? It is a part of me that is here to stay, whether I want it or not. How will I manage? Am I frightened? Is there any good in having AS? How does it limit me? Or can I maybe do new things that I couldn’t do before the diagnosis? Do I want to change my life, or can I carry on as before?

Since my student days, I’d always loved mountains and am an enthusiastic climber. In summer I go on hikes, alpine or rock climbs. In winter, I love to walk up on skis and then ski down again. After my miraculous health improvement, I wanted most of all to spend time again in the Alps. For many months, I’d barely been able to walk. Now with the support of my physiotherapist, I made rapid progress. Soon I cautiously tried skiing and by Spring I’d made my first ski mountaineering tour. I noticed that I had more endurance and flexibility than I had for many years. Slowly the idea formed itself that I could test my limits and try to do things that hadn’t been possible for many years. Maybe I wanted to show my AS who was in charge of my life now. But above all I noticed that the more I moved my stiff joints, the better I felt.

The call of the hills

That’s how I got the idea to train and attempt a big mountain tour in the summer. I want to experience myself in the high Alps again, test my limits and find out what is possible for me with AS. In the next blogs I will tell the story of this project. It’s an exciting prospect for me, although it’s strange to feel that whether I reach those summits is no longer the most important thing. “Der Weg ist das Ziel” as they say here. The journey is the destination. Is that something that Spondyloarthritis has taught me?