Saturday, 17 August 2019

Diagnostic Delay in Ankylosing Spondylitis (AS): My Experience


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I have finally received a definitive diagnosis for Ankylosing Spondylitis (AS) which, is now referred as Axial Spondyloarthritis, following my travels on a long and winding road of differential diagnosis in rheumatology. Axial Spondyloarthritis (axial SpA) is an inflammatory arthritis where the main symptom is back pain. I have suffered with back pain since my early twenties, which become more and more disabling in my thirties.



I know that in average there is an 8.5 years delay in receiving an AS diagnosis. I suspect this is even longer for women, as AS is more common in men, whilst Fibromyalgia is more common amongst women, so they are more likely to receive Fibromyalgia diagnosis due to epidemiological phenotypes. There is also a question of how the diagnostic delay is measured, some studies measure this from when symptoms have started, while others measure it from first consultation about the symptoms with a GP or seeing a rheumatology consultant. As back pain is highly prevalent in the general population, many people do not seek medical advice for years, and even when they do, they may never get a referral to rheumatology, unless they had repeated blood tests with raised inflammatory markers. In the UK, the wait to get an appointment for a rheumatologist could be anywhere between one to 6 months, introducing further delays to the diagnosis, when early intervention makes such a difference in AS, as it may prevent irreversible loss of spinal function and poor long-term outcomes (Danve and Deodhar, 2019).



Despite working and specialising in rheumatology myself as a clinician and researcher and having a sneaky suspicion (!) that my diagnosis of Fibromyalgia is incorrect, it still took over 5 years and change of rheumatology consultant to get a differential diagnosis of AS. This is 5 years from my first referral to the rheumatologist, not the start of the symptoms. I have followed the NHS pathway like any patient, seeing a rheumatology consultant I was referred to, and had several blood tests, clinical examinations, and MRIs. But MRI scan did not show any anomalies and my blood tests sometimes did show raised markers and sometimes did not. I was not offered an x-ray, as the rheumatologist suggested that early changes would not be visible via the x-ray and given me a Fibromyalgia and Undifferentiated Spondyloarthropathy diagnosis. I was prescribed Amitriptyline to help with my pain. Although, this is an anti-depressant it is used for the management of pain and sleep. Although it allowed me to sleep through the night, it did not agree with me at all, lowering my mood significantly and affecting my cognition. It was impossible to be on that medication and drive to work in the morning, and able to concentrate on anything until after the later afternoon. So it was not going to do for me and after a couple of months trial I came off this medication despite my rheumatologist insisting that I should give it a 6 months. I have never been depressed before and would rather be in pain than feeling this low. So, I tried to self-manage my symptoms, following the guidelines for non-pharmacological management of Fibromyalgia. Yet, I had all the clinical symptoms of AS, with mainly suffering from backpain with some peripheral involvement on and off. Most recently, I was admitted to the A&E with suspected septic arthritis, I was very ill. Prior to this I had what felt like a full-blown flu, with clear signs of synovitis in my right hand and knee. This was ruled out; I was given initial treatment to get me back on my feet and advised to see my rheumatologist. This time my husband who also works in the field of rheumatology insisted on me seeing another consultant rheumatologist, a spine specialist, in order to get a second opinion on my diagnosis. Although I was not hopeful that I will get a different outcome/ advice, I went along with it and I am so glad that I did. Clearly, there is something in listening to what your husband says every now and then!

This time my whole experience of being seeing by a rheumatologist was different. The consultant spent 40 minutes with me taking a thorough history (I have history of JIA), conducting a clinical examination which involved taking my shoes off (my feet never got a look in before), and examining my nails (as I had some nail pitting) and straight up told me that he is pretty sure that I do not have Fibromyalgia. In addition to all other clinical indicators, his clinical examination shown that I had pain in very specific joint sites and tendons, rather than wide spread soft tissue pain. He was pretty convinced that I have AS, but he wanted to get some x-rays and blood tests done, as well as an MRI to make a definitive diagnosis. He was surprised to hear that I never had an X-Ray. To my surprise, despite spending 40 minutes examining me (my previous consultant only ever seen me for up to 10 minutes) he said that I could have the x-rays and bloods done today and then we can have a look at it together later. Which is exactly what happened. Usually my rheumatologist would refer me for an MRI and blood tests, which would take another month or two to get an appointment, and another few months to see the rheumatologist for a review. When I got back with my x-rays, he sat down with me and go through the clear signs of enthesopathy and fusion on my spine and sacroiliac joints, telling me that this confirms his initial thoughts about my AS diagnosis. The enthesopathic lesion of ankylosing spondylitis consists of a nonspecific, nongranulomatous inflammatory lesion which leads to destruction of the attachment of ligament to bone. Resulting erosion leads to reactive bone formation which may form a new enthesis and around the outer fibres of the annulus may lead to syndesmophyte formation. What determines the distribution of the enthesopathy and ankylosis is not known (Ball, 1983). He also added that if you know what you are looking for, these signs are very easy to pick up on x-ray, nevertheless there is a common misunderstanding amongst rheumatologists that the MRI is the best option to determine the early signs of AS. I was amazed to hear this, knowing how much cheaper and accessible x-rays are compared to MRI.  My heart sank at the thought of added economic burden of delayed diagnosis, staff time, resource use and medical prescriptions to the NHS. Never mind the costs to the individual and their families, whilst going from one clinical appointment to another, taking time off from work, struggling along for years and years to manage their condition.

To summarise, after years of going back and forth, I have received a definitive diagnosis and a well discussed treatment plan, all in one day. Although it may sound strange to say that I am really happy, I can’t find any other words more appropriate to express how I feel. I mean, for sure it is not a happy occasion to be told that you have a potentially limiting, life long condition. But now that know what I am dealing with, I can get the most appropriate, targeted medical management as well as specific exercise programme to help my self-management. That is such a relief and gives you hope that things might get better. But I know that there are many others out there still waiting to be diagnosed, and I can but imagine how challenging this is for them, especially if they are not familiar with the diagnostic criteria and the NHS pathway, as well as me.  Of course the journey for those from hard to reach populations, those with lower health literacy and/or from disadvantaged backgrounds, all together requires another blog to explore [watch this space]. 


Knowing what I know now about my condition, my first stop was the National Ankylosing Spondylitis Society NASS website, which consist of helpful information on how to manage AS and resources around the latest in AS research and treatment guidelines. NASS is the only UK charity entirely focused on axial SpA including AS and they have also developed a targeted exercise programme called “Back to Action” which you can follow it in your gym or at home as part of your daily routine. Which suits me fine, as I am not keen on spending time at the gym and rather exercise at home or outdoors, preferably with my dogs. NASS website includes easily accessible exercise videos and advice. Moreover, Back to Action programme is also available as an App free to download at the app store. I have already downloaded this (but of course!) and will start my new exercise programme tomorrow. I would highly recommend anyone with AS to get a NASS membership to become part of this community to take advantage of the additional benefits at a very low cost. I certainly will. Especially because I know that these funds also support important research into AS to make our lives better. 




References

Ball, 1983. The enthesopathy of ankylosing spondylitis. Br J Rheumatol. 1983 Nov;22(4 Suppl 2):25-8.

Danve and Deodhar, 2019. Axial spondyloarthritis in the USA: diagnostic challenges and missed opportunities. Clin Rheumatol. 2019 Mar;38(3):625-634. doi: 10.1007/s10067-018-4397-3. Epub 2018 Dec 26.

Saturday, 12 January 2019

New year, new me: Lose weight, exercise and have more 'me time'



As we have now left another year behind and trying to ease ourselves into 2019, we are all motivated to think what we want from this brand new year and plan achievable goals. What with magazines, tv programmes and social media channels covering new year resolutions such as losing weight, joining to gym and getting your finances sorted, and advertising industry bombarding us with offers on discounted gym memberships, weight loss clubs and even elective-surgery to make us look 10 years younger, what choice do we have but reconsidering the cancellation of the direct debit to the gym membership we have not used since January 2018?

Well, for one, I thought to myself that this year I will not give into the social pressures and will not renew my gym membership -which I had for the past five years and used it about five times-. Don't get me wrong, I would love to be one of those people (e.g. my husband) who enjoys going to exercise classes and workout indoors, and can commit to doing so at least twice a week to make the membership count. But I am not. I am not going to make excuses such as 'I would love to but I don't have time' as I know that the gym is literally five minutes walk from my house and if I really wanted to I could easily make time for it. The truth is, I rather be indoors, curled-up on the sofa with a good book or walking outdoors with my dogs / touring the countryside with my bike, admiring houses I can't afford to buy. As someone living with arthritis, my default choice will always incline towards the sofa option. But I also know -and should know as a clinician and health researcher- that I need to increase my physical activity levels to cope better with pain and fatigue, as well as keeping fit and managing my weight. The recommended guidelines for physical activity suggests, to stay healthy or improve health, adults need to do 2 types of physical activity each week: aerobic and strength exercises.

Physical activity guidelines for adults 




How to remain/ become more active with arthritis?


So, how do we go about having more realistic goals towards increasing our physical activity levels if we are living with arthritis and not inclined towards wearing lycra in front of mirrors in public? The answer is simple, do something you enjoy, do it regularly and do it in manageable chunks, being kind to your body. The trick is, not do get too excited and over do it. You probably have done that before. You know, perhaps you were having a good day and over did it and then ended up hurting so much the following day, it put you off doing it again? I know, I have been there. In fact, this is how we develop exercise intolerance or a 'can't do' attitude. I see it all the time in my clinical practice, people say that they used to love doing gardening, but can't do it anymore.. or that they used to hike, but don't do it anymore as they don't have the stamina. The fact is, they actually CAN but just CAN NOT do it the way they used to do it. Or, some people are simply too worried about doing more damage to their joints. First of all, let me assure you that you can do more damage to yourself by doing nothing. Sedentary life styles leads to muscle loss, weight gain and decreased fitness. Sitting for long periods is thought to slow the metabolism, which affects the body's ability to regulate blood sugar, blood pressure and break down body fat. This includes watching TV, using a computer, reading, doing homework, travelling by car, bus or train but does not include sleeping. So it is really important that we at least maintain our physical activity levels, and ideally increase it, if we want to see real benefits.



Coming back to gardening, yes, you may not be able to trim down all your hedges at once and lay your flower bed in an afternoon. But can do it over a longer period of time with some sensible planning and careful adjustment as to how you go about doing it without compromising your joint integrity or energy levels. I understand that garden tools can be hard on aching hands and going down on your knees may not even be an option anymore if you are struggling with knee/ hip pain and problems. But, if there is a will, there is a way. None of us have to give up on things we love and enjoy, especially if they have additional health benefits. Rheumatology occupational therapists can help you to participate in activities you once treasured, by making tailored recommendations towards how to change the way you do things to keep active and achieve a healthy balance between daily activities, work and leisure. You can also access to written self-help information freely available on leading arthritis charity websites, such as the Versus Arthritis and NRAS on how to remain active, stay at work and manage common symptoms of arthritis. There is a wealth of self-help information out there to help with other important things too, such as sex and arthritis as pain and fatigue may reduce your enjoyment of sex and other activities and interests that you share with your partner.



So, my new year resolution for increasing my physical activity levels are to take my dogs out for longer daily walks, do daily stretching and strengthening exercises at home to manage pain, and perhaps most importantly to have regular 'me time' to look after my psychological wellbeing by doing more mindfulness and relaxation. Mindfulness practice involves giving the mind and body the space to relax, acknowledge and release feelings about pain or other challenges, let go of tension, and tap into a positive outlook. Research evidence supports that focusing on negativity exacerbates our pain and fatigue. Mindfulness practice can allow you to step back from the cycle of negative thinking and provide an opportunity to be more present in the here and now.


There are countless free resources available on the internet to help you understand how and where to start to practice mindfulness and take a mindful approach when interacting with other people and the environment that may challenge our inner peace. Here is a brief how to guide for people with arthritis.

So, don't sit there. Get up and potter around the house, go up and down the stairs, do some stretches. The less you sit still, better your pain and fatigue will get, and you will notice significant changes in your joint stiffness too. If you are still unsure whether to exchange your comfy sofa for a walk, I suggest you spend five minutes to read about the 'sitting is the new smoking campaign' here. Did you know that you burn on average of 50 calories more per hour by standing? Standing up for 3 hours/ day, five days/ a week adds up to 750 calories burned. In a year that adds up to 30,000 calories, which is equivalent of 9 pounds in weight! So, what are you waiting for?




Wednesday, 7 November 2018

What is your gut telling you?


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Did you know that your gut is practically your second brain? Yes, indeed the enteric nervous system is often referred to as our second brain and it houses a complete ecosystem of microbiome [a diverse range of bacteria, yeast, parasites, and other single-celled organisms that live in and on our bodies] which is unique to us as our fingerprint. The gut also lined with a vast neural network comprises some 100 million neurons. To put this into perspective, our gut has more neurons than our spinal cord and it gives more information to our brain than it receives. So, our gut is not only the main portal to our external environment, but also runs the complex procedures such as processing food, absorbing nutrients, dealing with infectious agents and toxic substances and finely tuning our immune system pretty much by itself. Ok, our gut is not our thinking brain, it does not help us to pass an exam or to multi-task, but there is a growing evidence to suggests that our gut strongly influences how we feel. I am not simply referring to times that when we feel bloated and uncomfortable, and therefore not in the mood; the gut–brain axis  -the biochemical signalling that takes place between the gut and the central nervous system (CNS)- is so sophisticated, changes in the composition of the gut flora causes changes in levels of circulating cytokines, some of which can affect brain function. Cytokines act through receptors, and are especially important in the immune system. Considering the fact there are at least 80 types of autoimmune diseases such as Rheumatoid Arthritis (RA), Inflammatory Bowel Disease (IBD), and Systemic Lupus Erythematosus [SLE], which are commonly chronic, debilitating and sometimes disabling, it is about time that we start to pay attention to what our guts are telling us. 


Because our gut is so sophisticated and interconnected with our entire body, multitude of factors can affect its balance. If our lifestyle choices lead to stress and anxiety, poor dietary habits, illness and sedentary behaviour, which we often try to fix with taking cocktail of drugs, these can lead to abdominal pain, bloating, nausea and vomiting, indigestion, constipation, diarrhoea and flatulence (wind). Moreover, we know that the gut produces more than 90% of the body's serotonin, a hormone that helps regulate our mood or emotions. If the gut is not functioning well, regulation of such vital hormones are also affected. To cut the long story short, if our gut is not happy, it is unlikely that we can be happy and contented.

CHRONIC PAIN AND FATIGUE

As an arthritis sufferer, health professional and a rheumatology researcher I have always been fascinated by the role our gut plays in the symptoms of arthritis, such as pain, fatigue, low mood and unrefreshed sleep. As I specialised in self-management and patient education, I made a point of talking about healthy eating and what that is look like to my patients and students. Nevertheless, like the majority of my patients, over the years I have started to carry on extra weight around my abdomen (which suggests visceral fat, stored around a number of important internal organs such as the liver, pancreas and intestines) that did not help my pain and fatigue levels.

Of course, I tried to look after my diet and eat clean; I stopped eating red meat 20 years ago, and ate chicken and fish in moderation, so my diet mostly consisted of green leafy vegetables, whole grains and fruit. But more often than not I had given in to sandwiches and cakes laid around in work meetings and conferences and nibbled on late-night snacks of peanut butter sandwiches and crisps. I had that ‘second wind’ in the evenings [no wonder] where I could work until the early hours of the morning, and then go to work in the morning wondering why I have chronic widespread pain and fatigue. It’s not that I did not know that my lifestyle was aggravating my condition, I did. But like everybody else I was the victim of my own habits and comfort zone - made excuses for myself such as ‘I am a night owl, I am just more productive at night’ or ‘I will sleep when I die’ and for late night snacks I simply convinced myself that staying up late meant I needed sustenance! I knew I needed to exercise more, but I neither like the gym nor I had the time for it, hence the only real exercise I did was walking my dogs, which I frequently found more exhausting than it should, having spent all my energy on working and not sleeping. The trouble is I love my work, so I never really give it a second thought that I should work less.

INTERMITTENT FASTING

At around six weeks ago, I watched a documentary on Fasting whilst travelling back from London on the train.  I knew about fasting already and have briefly tried the 5:2 intermittent fasting previously, failing miserably as I couldn’t cope with going without food all day. As I knew the science behind fasting, the associated health and longevity benefits, I wanted to watch this documentary out of interest. Those who knows me well will know that I am obsessed with non-fiction books, audiobooks and documentaries, so it was just something to do whilst travelling on the train to avoid motion sickness. The documentary explored 7 different methods by the world's leaders of fasting. I really enjoyed the film and was particularly fascinated with the 16:8 intermittent fasting method which seemed easy to do yet very effective. This type of intermittent fasting involves limiting consumption of foods and calorie-laid beverages to a set window of 8 hours per day and abstaining from food for the remaining 16 hours. This cycle can be repeated as frequently as you like, from just once or twice per week to every day, depending on your personal preference. In addition to weight loss, 16:8 intermittent fasting is also believed to improve blood sugar control, boost brain function and enhance longevity. It is said to cause insulin levels to drop, which improves insulin sensitivity, optimises blood sugar levels and burns fat. Plus, short-term fasting has been shown to induce an important cellular repair process that helps remove waste and toxins to keep your body healthy. Many people prefer to eat between noon and 8 pm, as this means you’ll only need to fast overnight and skip breakfast but can still eat a balanced lunch and dinner, along with a few snacks throughout the day. Skipping breakfast was not an issue for me, as I hardly ever had any [probably something to do with late night snacking]. However, you can experiment and pick the time frame that best fits your lifestyle. It is also suggested that, to maximise the potential health benefits of your intermittent fasting, it’s important to involve nutritious whole foods in your diet.

MY EXPERIENCE OF INTERMITTENT FASTING

I decided to have a go at this, purely due to its simplicity with a hope to stop my late-night feasts. I bought a NutriBullet to make delicious smoothies to increase the nutrition value of my food intake and started to take pack lunch to work, so I was not tempted by the fast food options.
I have decided to eat between 10am and 6pm as this meant I skip breakfast, eat a normal lunch and just have an early diner at work. I must admit, the first week I struggled a little bit at night, as past 9pm I was getting peckish and rather resentful of my teenagers’ constant snacking throughout the evening. My husband has been very supportive and said that he will also try to fast 12 hours over night, despite being very healthy and not having any weight issues, he was also attracted to the health benefits of fasting. Interestingly, being hungry at night made me go to bed early to avoid picking on food. Before I knew, my sleep got into a better routine, so I was not as tired during the day. After the first week the fasting started to get so easy, I started going 18 hours in average without food instead of 16 as naturally I was stopping to eat earlier around 4pm. After two weeks I started to notice real difference in how my clothes fit better and my skin started glowing. Prior to this, I had almost frequent headaches, which sometimes turned into migraines or cluster headaches for days. I did not have a headache in the last 3 weeks, my joint pain is significantly reduced, and I feel actually energised first time in years other than the times I have been on steroids. I also sleep better, going to bed approximately the same time every night and waking up at the same time each morning. Consequently, I think I am a nicer person to be around with, as I generally feel in a good mood. Although 4-weeks is relatively a short time to start thinking about its long-term benefits, I can honestly say that I feel I have finally found something that works for me and I anticipate that it will continue to work in the future as it is so easy to do and the benefits are so worth doing it. I have been doing the intermittent fasting every day, but the evidence suggests that taking the weekend off has no impact on the long-term health and weight-loss benefits. Talking about weight, so far, I lost 4cm off my waist, which means visceral fat loss. So, I am a happy girl. But I am most certainly more impressed with the impact this way of eating made on my arthritis symptoms. As a result, I am doing more, longer walks with my dogs and sleeping better.

Last weekend we went to the movies as a family and I had my usual nachos loaded with cheese and lots of jalapeƱos. This was followed by a visit to the TGI Fridays (kids’ favourite) and having been eating clean for weeks I thought I will treat myself to fried fatty food, despite not being hungry at all. I ordered a starter portion, but still was unable to eat it all. It was not long after I knew that this was a big mistake, as my second brain (the gut) did not concur with my thinking. I had the worse indigestion and back pain all night and was unable to sleep first time in weeks until after midnight. It just brought home to me, how quickly my gut got used to the good life and rejected the ‘bad food’ and how punishing it was to go against it! I don’t think I will be making that mistake anytime soon. I think finally I learnt to listen to my gut. Maybe it was trying to talk to me for years and I have learnt to ignore the signs. But I now hear it loud and clearly. So, I wanted to share my experience with everyone, and especially with those who suffers from chronic pain and fatigue. What is your gut telling you? If you can’t hear its voice, or if it is crying out with the symptoms of irritable bowel syndrome, and keeping you up at night, maybe you could consider intermittent fasting to see if it will make a difference to your symptoms? Please note, if you have a health condition and/or you are on medication, I strongly advise that you should consult with your GP prior to starting this regime to ensure that you can safely undertake it.

You can find more information on intermittent fasting here.