23 Jan Healthy Habits Changed My Relationship With Arthritis
Rheumatoid arthritis is currently an incurable disease that is very difficult to manage. I have no doubt that my story is not unique. In my 24 years of living with arthritis I have never experienced such improved changes in my disease activity as I have with the healthy habits I adopted in the last 9 months. I felt compelled to write about my experiences and try to spread the word about how I’ve learned to help myself live healthier and happier.
I was diagnosed with juvenile idiopathic arthritis when I was 4 years old after a brief, but dramatic bout of inflammation in my knees and wrists. That was in 1994 and now 24 years later, I have managed to come through the other side of the worst flare up I have ever faced with my disease.
Background About My Arthritis
Throughout my childhood, teenage and early adult years, I tried many different medications to control my arthritis: everything from methotrexate for 20 years to 10 different biologic treatments to Prednisone (a steroid), which I have been on since 2003. My arthritis presents mainly as joint pain and swelling to the knees, feet, wrists, however more recently it has also affected my lumbar spine. I am rheumatoid factor negative and fortunately have no evidence of skin or gastrointestinal disease.
In April 2017 I had been struggling for several months with fatigue and constant pain, but I was working through it and trying my best to ignore how I felt. One morning I woke up and was unable to get out of bed. All my peripheral joints had ballooned, were red hot and so painful that I could not even reach my steroids to put them in my mouth or hold a cup of water. I was bed and wheel-chair bound for a month before using crutches 8 weeks just to get back on my feet. During this time I could not understand how being on methotrexate, steroids and a new IL-blocker biologic could allow this to happen.
Why, as an active, young and otherwise healthy 27 year old who works full time, could I wake up one morning and not be able to get out of bed?
This question bothered me a lot. I was told by my rheumatologist that I had exhausted all available NHS medications and there was nothing else to offer me at present. Not being able to get up and about or stimulate my brain, I turned to the internet to see what I could do for myself before my mental health really took a turn for the worst.
Changing My Mindset and Setting Healthy Habits
First, I looked on forums and found that many people wrote about their negative experiences, how they were feeling and things that they were struggling to do rather than the positive healthy changes that had helped them. This rang a bell with me, especially as I came away from some of those websites feeling worse about my situation, not better.
I then remembered that I had met a lady at a wedding a year previously who was diagnosed with rheumatoid arthritis when she was 21 years old. She had not had much success with medication so she changed her diet and lifestyle. Adopting healthy habits led to most of her joint symptoms resolving. I was very skeptical about this, but as I lay in bed unable to work, I realized that I had nothing to lose.
At this point I’d like to mention that I am a medical doctor. I graduated in 2013 from a London medical school and work in Emergency Medicine. Due to my profession, I have always been taught that medications and standard western therapies are how patients feel better. While western medicine and therapies work for many, they weren’t working for me and during my flare in April that I began to question my own medications, which was quite a difficult thing for me to do.
I looked for evidence based around diet, exercise and holistic therapies in rheumatoid arthritis and there is next to none. What little there is, is anecdotal and shows variable results. However, I realized that changing my diet – starting with cutting out dairy – was easier than the pain I was experiencing, so I decided to give it a go.
Due to my flare my biologic therapy funding was cancelled and so with the help of increasing my steroids, my dietary change, cutting out alcohol and taking some vitamin supplements I began to walk using crutches. I furthered my therapy by starting spin classes (low impact) and 8 weeks later I was able to walk unaided with reduced pain levels. I was fortunate to also be able to get a full body massage for the first few weeks, a single session on Reiki and some reflexology. I began practicing mindfulness and tried to rid myself of self-depreciating and negative thoughts.
Finding The Right Combination
I have continued tapering down my steroids and have just started a new drug, Baricitinib. I am still dairy free, limit my alcohol consumption and do some sort of exercise everyday, no matter how bad I feel. I have been amazed at how all these small changes have enabled me to achieve so much more than before.
As a trained medic in the western world I have gone against much of what I know and have been taught my whole life. It also goes against some of what I have told my patients. However, my experience has helped me realize that, as with other autoimmune diseases, rheumatoid arthritis management is very patient-specific. What has worked for me may not work for you and vice versa. By not reaping long-term benefits from any DMARDs or biologic therapies I was forced to find alternative relief. Now that I have adopted healthy habits by not eating dairy and cycling daily, I have found that my pain is lessened each day.
Looking back at the last 9 months of my life feels like a huge and complex journey. From my experience in medicine and as a patient I decided that the internet needed a little more education, positivity and understanding of what arthritis involves. So I made www.RheumForImprovement.com and social media pages on Facebook and Instagram – @RheumForImprovement – on which I write blog posts about lifestyle, nutrition, mental and physical health and exercise suitable for everyone, with or without autoimmune disease.
The importance of what I have experienced is that arthritis research is so essential to help doctors understand what is best for people like me. With treatment results being so patient-specific we need further information about what causes these responses and why. Therefore if western medicine isn’t working, there are other options that can be made available without prejudice or skepticism – and I will admit that I approached my lifestyle changes in that way at first!
I feel very fortunate that I am able to work full-time again, although I have decided to change the area of medicine in which I specialize to allow myself a better and healthier personal life. My pain levels and swelling are improving and I truly believe this is because of the changes I made for myself both in my healthy habits and in my mindset.
My arthritis will always be here I have accepted that, but I no longer see myself as a ‘sufferer’ or a ‘patient.’ We all should strive to take control of our own bodies by starting healthy habits and I truly believe this is the start of a new chapter in my life.
I have written about all the changes I’ve made at length and in more detail on my website. I invite anyone interested to take a look and let me know about your own experiences so that I can continue to try new things, find more evidence and write about what can make us all healthier and happier.