So this article is more of a personal blog, sharing my experience of being diagnosed with an autoimmune condition that can make unimaginable changes to your life. It’s to raise awareness of the silent disease and share some of the unfortunate consequences it can bring with it.
Last year was one of the hardest years of my life which was, in my eyes, unfair, as I had so much to be thankful for. My partner, Chris and I, had bought our dream home, we’d finally got ourselves in a good place financially, and everything was just coming together.
We moved into our home the second week of January, so not long after the new year and we were excited. It was the first home we bought, and we were finally feeling as though the last ten years of hard slog was giving us the outcome we deserved. After living in rented accommodation over the previous ten years, it was a blessing to have somewhere that was ours.
Because we had a few days to move from the old house to the new one, Chris and I decided to hire a van and manage the move ourselves. As anybody who has moved house knows, it’s a tiring job, and one you wish would be over, sooner rather than later.
My health started to take a turn the same week as moving which is why, I believe, it took longer for the doctors to take it seriously, as they put everything down to me “straining myself”.
During the latter end of moving week, my feet began to swell, and it was becoming more and more difficult to walk. I remember crying in pain from a) driving the car as my foot on the accelerator was unbearable and b) walking from the car to the office or house would have me hobbling as I couldn’t put either foot flat on the floor. I started to see large swollen areas forming on the back of my heels and on the bottom of my feet, but even I had put it down to wearing the wrong shoes while moving.
As we had just bought a new place, we had beds and sofas on order which meant for the first couple of weeks, we sat on deck chairs and slept on airbeds. All the twinges and pains that were starting to appear were being played down on the basis that it had been a tough couple of weeks and one that would strain even the fittest and healthiest of bodies. However as the weeks went on, the pains and twinges didn’t go anywhere. In fact, they worsened.
The journey to diagnosis
In just a few short weeks, the symptoms became hard to ignore. My knuckles had become red and inflamed and sore to touch. To explain the feeling, it was as though my skin was paper thin and that it would tear with the slightest of movements. Then the joints in my fingers were next, making it increasingly difficult to do even the simplest of tasks like getting dressed.
I became more and more concerned about my quickly worsening symptoms and started making regular appointments with the doctor. I had already researched the symptoms of Rheumatoid Arthritis (RA) and was sure that they were the same symptoms as what I was seeing and feeling.
I saw five different doctors, each one giving me the same look of scepticism as the last. While unable to provide me with any other diagnosis, they would also not acknowledge any of the symptoms I was showing as being linked to the RA disease. They would state I was too young and that this wasn’t the kind of illness anyone would want, as though that would stop this from happening to me.
This had been going on for about five months, and my symptoms were quickly getting worse. The pain had started to appear in my neck and spine meaning some days I would be completely paralysed and have to take days off work. I had no painkillers to take except for paracetamol as none of the doctors would prescribe them.
I felt I was having every type of blood test possible except for the tests I needed to confirm my condition. It got to the point where both Chris and I felt we weren’t being taken seriously and the slow approach to getting any kind of diagnosis left us angry and frustrated.
We instead booked to go private. We scheduled some time with one of the top RA consultants in Wales in the hope he would listen and help us move forward. We managed to get time with him the week after we booked and when we met him, he listened, booked in all the right tests and scans and also prescribed me with some painkillers for the period we needed to wait for a diagnosis.
Unfortunately, a few weeks after meeting my consultant, my health took a turn for the worst, and I was admitted to A&E with excruciating pain in my groin. As I still hadn’t been diagnosed at this point, the doctors on call had no clue what it could be, and I was placed on the high-risk ward attached to a morphine drip.
The doctors again wouldn’t accept that the pain I was in could be RA related and so carried out multiple tests considering issues like a blood clot or a hernia. On this basis, I was kept in hospital for four days unable to eat as they had me prepped to be operated on, for what, I’m not sure. Eventually, with my partner, pressing them enough, they called in a doctor familiar with RA who confirmed this was a severe flare-up. I was released the following day and was then back in to see my RA Consultant who diagnosed me there and then with the condition. Even though I knew that was going to happen, I still cried. Maybe from the realisation of what this diagnosis meant, perhaps from the fact I was right all along and I finally felt listened to.
He talked me through all the medication I would now need to take to manage the symptoms including sulfasalazine and methotrexate. The bag I was given was huge, filled with multiple bottles and packets of pills to take. One daily, one three times daily, one weekly – it was pill overload. Apart from telling me that this was my life and I’d have to manage my symptoms with medication, I was given nothing else.
When we got home, Chris had to go to work, and I was left in bed to mull over the conversation of the day. This had been a diagnosis I was expecting, but I was given no support by the hospital. No discussion of aftercare. No conversation about my current health now and what I should be doing to help get myself to a good place. It was very much, here are your pills, take them and come back in three months. I was terrified.
I’ve never been one for medicating myself. When I have a headache, I’d rather deal with the pain than take pills for it. So, before I put one tablet in my mouth, I started to research each of them. The pros and cons.
This was what I was prescribed:
500 mg orally once a day in the evening.
This is known as a disease modifying anti-rheumatic drug (DMARDs). It aims to help lower inflammation levels, pain and swelling by damping down an overactive immune system. The drug itself can take up to 12 weeks before you see any real benefits. I did a fair bit of research on this drug as it wasn’t something I’d evet hear heard of. I took the decision not to take it because the views on this having any real impact were split. For every article I read about it working, there was an article that said it didn’t. I also weighed up the side effects that came from taking this form of medication and decided I couldn’t put myself through it. Some of the usual side effects include nausea, skin rashes and stomach pains with more severe effects including kidney failure or liver damage.
Eight 2.5mg tablets to be taken on one day in each week. The equates to 20mg per week.
A drug previously used to treat leukaemia and other forms of cancer was introduced in 1947. Studies have shown the earlier this medication is introduced, the better long-term outcome for the patient.
Again, this medication comes with a wide variety of side effects which can range from nausea, mouth ulcers, headaches and mild hair loss. There is a lot of research showing the benefits methotrexate can have on a patient. However, it’s no joke and needs to be taken with care. I agreed to take this medication on the basis I’d reviewed lots of studies and people I knew had seen some decent results. I will point out that I quickly changed from the oral tablet to the injection after suffering from severe nausea and fatigue. I now take 15 mg injection once a week.
Eight tablets of 5 mg to be taken orally per day. The equates to 40 mg per day.
Probably the drug that scared me the most. This is a man-made steroid drug which suppresses the immune system. It actually mimics the effects of cortisol, a naturally occurring corticosteroid produced in our bodies with anti-inflammatory effects. As this is mimicking the effects of something already created in our bodies, it helps to produce higher quantities of it. This means once you start taking the drug, you then need to be weaned off it to safely manage the reduction and allow your adrenal glands (that naturally produce cortisol) the time to readjust.
Some of the side effects of this drug include headaches, nausea, weight gain and thinning skin. Some of the more severe side effects include increased blood pressure and changes to personality. For these reasons, I again made the decision not to take this medication.
One 5mg tablet to be taken once a week.
Finally, the nicest of the drugs I was given. Folate is a supplement based tablet which is prescribed to all patients who will take the methotrexate medication. It helps to counteract the toxicity associated with the drug. As you can imagine, this one wasn’t a problem for me.
So after doing all this research, I was left with only one real medication to manage my symptoms. This meant I needed to look for an alternative approach and so both Chris and I started researching ways to help reduce symptoms of RA.
I learned that RA is an auto-immune condition which is where your immune system attacks the body, hence the symptoms I was seeing. I was shocked by how many other diseases that I’d heard of which were also contained within the autoimmune spectrum including Crohn’s disease, Hashimoto’s and even more shockingly hayfever and asthma.
This opened the doors for so much information on supplements, diets and lifestyle changes that could help minimise the condition along with the potential of even reversing it. Finally, I’d been given something that gave me hope. The hope of not having to medicate forever. Hope that I could control this disease myself. I’d also like to point out that when shared with my consultant, he would not confirm that diet had any impact on the symptoms of the condition. I’m now on a mission to prove him wrong and reverse this disease.
The Autoimmune Solution
We came across Dr Amy Meyers, a functional medicine practitioner in the US. Amy herself had suffered from an autoimmune disease called Graves disease which is where your thyroid attacks itself and becomes overactive. After trying lots of different options which unfortunately didn’t do the job, she finally had her thyroid removed but doesn’t agree that this should be the option for people. Since then, Amy has written a book called The Thyroid Connection which helps people understand the underlying causes with the aim of minimising the disease escalating to the point of no return.
From reading about this autoimmune condition, we found that Amy Meyers had also written a book called The Autoimmune Solution and I was eager to take a look. Both Chris and I have read the book and I personally, couldn’t recommend it enough. The book shares a step by step approach to bringing your body back to its optimal health and suggests a diet that helps to reduce inflammation and remove foods that have a negative impact on your body’s health.
From this, we decided to try a paleo and gluten-free diet. For me, a person who enjoyed eating out anywhere, this was a pretty big deal. I also removed nightshades, a collection of natural inflammatory foods like white potatoes and peppers. I basically went right back to basics and very quickly started to see changes. My knuckles no longer burned, I stopped limping and I now (12 months on), haven’t had a flare-up in longer than I can remember. This is pretty amazing.
While at the beginning it was hard to adjust. My motivation to heal myself was so intense, I stuck at it. I’ve seen so many other benefits from changing my eating. I’m more alert, I’ve lost a healthy amount of weight, I’m less stressed, I feel happier.
Where am I today?
So I’m still taking methotrexate (15mg), but that’s it. I don’t have to take any painkillers at all. I’m working out three times a week, and I’m eating well. I’ve started to introduce foods that don’t cause symptoms back into my diet, and I’m feeling good. My goal is to come off the methotrexate, and I’m on track to do so – my recent blood tests show no signs of inflammation.
While a life-changing and challenging year, I’m not sure I would change it. I’ve learnt so much and developed in so many different ways as a person, that I’m not sure this would have happened without going through what I have.
I found this video from Jocko Willink, a motivational speaker, who shares his views on dealing with setbacks, failures, delays, defeats, or other disasters. I found it to be quite an intense two-minute video but one which was relatable and really quite true.
Everything that happens to us in life teaches us something. And how we utilise that teaching is what really matters.
Health Hacking was born from this. I tirelessly trawled the internet for case studies, personal experience blogs, articles, recipes and reviews to help me learn about my disease and manage my symptoms. I want to create a community and site that helps people understand more about the benefits of living a healthy lifestyle and if relevant, manage their own health conditions with thought-provoking and interesting content all contained in one place.