By Fiona Lofton, as told to Sonya Collins
Twenty years ago, when I was 25 years old, I was running a lot -- half marathons and 10Ks in the Atlanta area -- when I started to notice that my knees were hurting. I just thought it had to be my shoes, and so I changed them. But then a couple of months later, my fingers and toes started to swell.
One weekend, I was helping to run a statewide retreat for the Adopted Teen Mentoring Program, and at that same time I was also working on a camp accreditation and planning my wedding, so I was under a lot of pressure and stress. That weekend at the retreat, all of a sudden, I couldn’t lift my arms anymore and it hurt to bend my elbow. It was very, very scary.
My shoulders and elbows hurt. I was in such intense pain that my roommate at that time said she’d wake up in the night and hear me saying “Ow, ow, ow” in my sleep.
I had my doctor’s appointment a week before my wedding. They did a lot of bloodwork, took X-rays, and asked a lot of questions.
On my honeymoon, I was in a lot of pain. I had difficulty walking up and down stairs and used over-the-counter anti-inflammatories the whole time.
When I came back, my doctor referred me to a rheumatologist. So I had a lot more bloodwork, and then the rheumatologist said, “It looks like you have RA,” which was really nerve-wracking at 25 years old. I thought, “I’m young, I run, I exercise with weights, I eat healthy. Why is this happening to me?”
At that point, I had a lot of inflammation in my hands and toes, and lifting my shoulders was hard. It would take me a good hour or so to really get out of bed in the morning and be able to get ready. I was very slow-moving because I was stiff for a good 30 to 40 minutes in the morning. I did use a lot of heat and that would help. I took really hot showers.
My doctor encouraged me to keep moving. So I stretched in the mornings even though it hurt.
I was often late to work because it took me so long to get moving in the mornings, but I had a very understanding boss.
Those first 6 months to a year after my diagnosis, while we were still trying to figure out which medicines were going to work for me, were incredibly hard mentally and physically.
I worked in a building that had no elevator, so it was difficult to go up and down the stairs. Sitting for long hours was hard, too. But it also hurt to move. I was frustrated and angry that I couldn’t run anymore. Still, I knew I needed to, so it became a mind game for me to push myself to get up and move. It was very difficult for me to figure out what I could and couldn’t do to get moving.
Trial and Error
At this point, the medicine wasn’t working yet, and I was very discouraged, so I went for a second opinion. That doctor also encouraged me to keep moving. So I went back to my original doctor and we started trying different medications, and she encouraged me to try water aerobics.
I was in a class with women 50 years older than me. They would ask me if I was there with my grandmother. I just had to laugh instead of cry.
It ended up taking a year to a year and a half to get the medicines right. But one of the drugs, which is also a chemotherapy drug, always made me sick the day I took it. I had to be cognizant of what I ate that morning and plan to be near a bathroom.
But eventually I started feeling better. I was walking and trying to jog a little. My feet weren’t hurting as much.
Then biologics entered the scene. We had just moved to South Carolina, where I found a new rheumatologist. She took me off all those other medications and put me on a new one.
A Healthy Diet
My rheumatologist also talked to me about diet, encouraging me to eat less fried food, less red meat, minimize alcohol, and cut out sodas and aspartame.
The dietary changes helped a lot. And running helped immensely, too. I basically went into remission. I was back. I was training for a marathon.
Planning a Family
Then we decided to start a family. With RA, as soon as you find out you’re pregnant, you have to come off certain medications. But what is wonderful about pregnancy for many women is that while you’re pregnant, you no longer have RA complications.
But after my first daughter was born, the pain came back so quickly that I wasn’t even able to hold her in my arms. I had to stop breastfeeding so that I could go back on the biologic.
Those kinds of setbacks really brought me down mentally.
My mom, who is a pediatric nurse, said to me, “It’s OK. You don’t have to breastfeed. Kids turn out just fine. You need to let that go and take the stress off of yourself because the stress only causes more inflammation and pain from RA.” My rheumatologist felt the same way. So that was good to hear.
I went back on the medication, but it didn’t work for me anymore, so I had to switch to another one. It took another year or year and a half before I was back to 100%.
I wanted to feel good for a few years before we had another child -- to get back into running and do everything that I felt like I could do. I didn’t want to stress myself out again. When I did get stressed out by external things, I could feel the inflammation in my body. I would feel worse, more tired, and more achy, so I wanted to make sure I could handle stress well.
Five years later -- we were very intentional -- I got pregnant with my second child. It was the same: No symptoms during the pregnancy and then I had to go back to managing the condition as soon as I wasn’t pregnant anymore.
Managing My Condition
I had to make healthy choices and work with my rheumatologist again to find a third biologic that would work for me because the one I was on didn’t work anymore after my second pregnancy. That’s also when we learned that I had a gluten sensitivity, so I had to transition to a diet of less gluten and more protein and vegetables. That certainly helped bring my inflammation levels down. My rheumatologist tests that every year.
But it’s exhausting. I have to think about how to cook and what to order at a restaurant that won’t make me feel terrible. Sometimes, I feel like a short-order cook in my house because I cook my stuff and then I cook the kids’ stuff. They eat as much of what I eat as they can, but, you know, they don’t really like gluten-free pasta.
When it’s controlled, I feel absolutely fine. I don’t think it affects me as much at work or at home as it used to. There may be days, as I’ve aged, that I do feel more fatigued, so I have to be cognizant about taking some time to just sit down. Gone are the days when I would run around the house mopping and dusting. I take 30 minutes to sit down and relax and regroup whenever I need to.
I think I’m lucky compared to people I’ve met in doctor’s office waiting rooms who have RA. I think it’s because I took it head on. I researched. I said, “I’m not going to not exercise, so if I can’t run, what can I do?” I had to pivot during short seasons in which I couldn’t do the things I loved until I could get back to it again. That’s what led me to water aerobics, which brought a love of swimming. I still swim laps when I can.
I run when I can and walk when I can’t. Then I do weight training on the other days. Between those three activities, I’m exercising on average 5 days a week.
Another thing that has helped me is finding the right support. You need your medical team and your family and friends.
Also, advocating for yourself is huge. My rheumatologist is amazing, but there are plenty of times that I sit down with her and say, “I’m not happy with how I’m feeling. What else can we do?”
But I know it’s the lifestyle changes that have really helped me. I know people with RA who just rely on medicine and have not made the lifestyle changes, and they aren’t in the place that I’m lucky enough to be.
Photo Credit: alvarez / Getty Images
Fiona Lofton, Chapin, SC.