Diet and Exercise: My Game Changer

This is my story of how I’ve modified my diet and exercise habits to completely change my lifestyle. I want to start by saying that no two people with spondyloarthritis (SpA) may have the same symptoms or benefit from the same nutrition and movement plan. Everyone has their own story and journey toward wellness. This is mine.

In 2001, I started to experience lower back pain intermittently. Eventually, the pain got so intense and severe that I ended up in the emergency room when I was 21. The best way to describe my pain is that it was like being stabbed in the lower back with a lightning bolt that went down to my heels. It was painful just to breathe. I remember being asked what my pain was on a scale of 1-10. It was a 10. I had never experienced this kind of intense pain before, and the doctors couldn’t figure out why.

I was referred to an orthopedic surgeon and a physical therapist. Physical therapy seemed to help, but I still experienced pain and fatigue. A year later, I woke up with severe eye pain and redness. My vision was so blurry that I could barely see. At an emergency visit with an ophthalmologist, I was diagnosed with iritis/uveitis. My ophthalmologist asked me if I had any back pain. This was the key to my diagnosis.

In 2003, I had my first visit with a rheumatologist, where I tested positive for the HLA-B27 gene. This gene, along with x-rays and an MRI, led to my diagnosis of ankylosing spondylitis (AS). I realize now how fortunate I am to have been diagnosed so quickly. I started taking methotrexate and other medications, but had to stop due to side effects. I eventually started Enbrel and was so thankful to find relief. Being on a biologic helped me get through my final years of college.

I continued on Enbrel through the years with occasional joint and iritis flares. In 2008, I became pregnant and my doctor recommended that I discontinue Enbrel. About a month after stopping Enbrel, I had one of the worst flares I’d ever experienced. I could no longer work and was on disability. I was in a flare during my entire first trimester, but I went into remission for the rest of my pregnancy. About a month after my daughter was born in 2009, I experienced yet another flare and immediately went back on Enbrel, which I continued until my second pregnancy in 2012. This time it was different in that I didn’t have any significant flares or pain and my AS was in remission during the entire pregnancy. In 2013, after my second daughter was born, I stayed in remission for the next three years.

The main changes I made during my second pregnancy that I didn’t for the first was eating healthier and being more physically active. I continued eating healthy and exercising after my pregnancy and started researching diet and AS to see if there could be a correlation.

I noticed that whenever my stress and anxiety levels increased, my inflammation markers started to climb, too. I read several books about the immune system and diet. Unfortunately, there is no one-size-fits-all diet for AS. There are foods that cause inflammation for me, but don’t cause inflammation for others.

Before changing my diet, I was eating a regular Western diet, high in processed foods and sugar. In late 2018, my husband started a low carbohydrate/high fat ketogenic diet to lose weight and improve his underlying health. After he started to have success, I decided to jump on board too, with the support of my doctor. Another motivation to start this journey was an article I had read in Spondylitis Plus, titled, “Foods That Heal, Foods That Can Harm” by clinical nutritionist Michelle Schirra. That article reaffirmed that this type of diet could possibly help reduce inflammation, so I decided that I would use the ketogenic diet as a starting point and tailor it from there. I was not exactly strict about it, so I didn’t count macros, carbs, or calories. I needed to keep it simple in order to stick with it.

To start, I eliminated sugar, which was harder than I thought, as I learned that sugar is in almost everything! I became programmed to closely look at food labels and wouldn’t buy anything with more than 2 grams of added sugar. I started shopping more in the perimeter of the grocery store and sticking to whole foods like produce, meat, and dairy. I also started buying organic.

My next elimination was starchy foods. There is a lot of information online about using the low/no starch diet (The London Diet) for AS. I stopped eating bread, pasta, rice, cereal, potatoes, starchy vegetables and fruit. It was not easy and I did have days where I would cheat, but that’s okay. In a few weeks, my body stopped craving those foods as I was now fueling myself with fats instead of carbs. I started to feel better. I started to feel like I could stick with this diet long-term and really make a lifestyle change with some discipline.

After a couple of months of the sugar and starch elimination, I started to taper off Enbrel. I didn’t intend on going medication-free, but it just happened that I felt so good that I wondered, what if I stop taking my medication? Would diet alone work for me? This was a personal decision and I wanted to see for myself if this change in diet was truly helping my AS.

I decided my next goal would be to do a full elimination diet and start to slowly reintroduce foods back into my diet to learn which specific foods trigger inflammation for me. I started with the least inflammatory foods like chicken, salmon, cauliflower, spinach, broccoli, berries, and olive oil. Keeping a food journal was extremely important while going through this process. I documented the foods I reintroduced and added them to the “avoid” column if I reacted to it. The reactions typically manifested as stiffness and back pain anywhere from three hours to two days after reintroducing a food. I feel that fasting helps if I feel a flare coming on. This in a way resets my gut and I have found just a 12-24 hour fast to be beneficial. This has been a long process, but so worth it.

I also created a health journal and documented the date of a flare, where it was located and how long it lasted. I continue to this day to only eat foods on my “safe list,” and I know that if I eat something that isn’t on my safe list that I might flare. Just the thought of a painful flare is enough for me to stay on track.

Here is a list of the foods I currently eat:

This journey has completely changed my lifestyle. I am off medication and doing well. I have had occasional flares, but they have been short-lived and don’t seem to occur more often than when I was on Enbrel. I have learned so much about my body by going through this process.

In terms of activity and exercise, I’ll admit that I don’t like going to the gym. I had to find something that I enjoyed doing and was also a physical activity, but low-impact. Before I started exercising, I started practicing mindfulness, which is staying focused on the present. I use a meditation app to practice breathing exercises and have gotten in the habit of doing this regularly.

I started to be more active by walking and tracking my steps throughout the day. Going on hikes with my family has also been a great way to stay active. I’ve always enjoyed kayaking, so I decided to join a women’s kayaking group and go on day trips at local lakes. Being outside and surrounded by nature is very healing for me.

Yoga has also helped me manage and stave off flares. I take yoga classes weekly and had to learn to go at my own pace so that I don’t overdo it. When I started this lifestyle change, I also decided to begin monthly massage therapy. Massage is a huge tension and stress reliever for me and has been an important part of my journey. A combination of daily movement, massage therapy, and meditation has all helped bring my stress level down.

One of the major reasons I’ve been able to stick with this diet is that I have fantastic support. It would have been so much harder if my husband weren’t right there with me. We made this lifestyle change together.

I also receive and give support in another way. Right before I started my nutrition journey, I searched for a support group through the Spondylitis Association of America (SAA). When I couldn’t find one in my area, I decided to start my own group. I went from never attending a support group, to leading one. This was a huge leap for me, and I am so thankful to have joined such a supportive community. Being able to share my journey and listen to other people with similar journeys was the best therapy and affirmation I could have hoped for. Knowing you are not alone is so reassuring. My group encouraged me to experiment with my diet, and that’s really what kept me motivated. If you haven’t already joined an SAA support group in your area, I highly recommend checking one out!. If a group doesn’t exist in your area, consider starting one of your own.

At this point in my food journey, I would say that my diet is a combination of ketogenic, low starch, and autoimmune paleo (AIP). I also take vitamin D3 and K2 daily, and utilize anti-inflammatory supplements such as turmeric and probiotics. In the end, you need to create your own diet that works with your body. I would recommend seeing a dietitian or nutritionist for professional support.

Although there aren’t definitive studies that spell out the correlation between spondyloarthritis and diet, research is ongoing as we speak. I am currently a participant in a research study that is looking to identify the role of the microbiome in patients with AS. The more information we find out about this disease, the closer we will be to a cure, which is very exciting!

This lifestyle change has been the best decision I have ever made. I have learned so much about myself. My overall health has improved, my energy levels have increased, and flares have decreased tremendously. Everybody is different and what works for me might not work for you, but I have realized in this process that food really can heal. Making this lifestyle change wasn’t easy, but has been very rewarding.

Note: My intention is not to give medical advice or endorse products or practices. Please consult your healthcare provider before starting any type of lifestyle change.