In Her Own Words: Living With Rheumatoid Arthritis
As told to Jennifer Hellwig, MS, RD
Lisa, a 35-year-old dietitian from Ohio, was diagnosed with rheumatoid arthritis (RA) eight years ago. She has found support and information through the Arthritis Foundation and is now teaching a self-help class for the foundation.
What was your first sign that something was wrong? What symptoms did you experience?
I would wake up in the morning and my feet would really hurt. It would hurt just to walk across the floor. And then I started noticing other symptoms—my hands started to hurt and I couldn’t snap my fingers. I would get pain off and on in different joints in my body.
What was the diagnosis experience like?
I had just joined a gym and was going pretty frequently, so I just thought that I overdid it at the gym. But after having pain for about two or three months, I went to my primary care doctor. I really didn’t want to, because I didn’t want to know that I had something. My doctor examined me and took some blood and did a test for something called rheumatoid factor, which came back negative. She also thought it might be overexertion from exercise and she gave me some high-dose ibuprofen. But after two weeks I was still in a lot of pain, so I went back and she took more blood and we found out that it was RA. She referred me to a rheumatologist, under whose care I manage my condition.
What was your initial and then longer-term reaction to the diagnosis?
I was upset but I was also a little relieved, because at least I knew that there was a reason for the pain I was feeling. But at the same time I didn’t know anything about it, so I was also afraid. Some days I am angry, because I'm sick of being stiff and sore and I hate taking drugs to control pain. But I try to take advantage of when I’m feeling well (I’ll exercise more, do more around the house), because I never know when I'll have a flare and I'll be useless.
How do you manage your disease?
I was started on a series of drugs, some of which are called DMARDs (disease-modifying anti-rheumatic drugs). These are supposed to halt the disease from progressing any further, to prevent you from getting twisted joints and disfigured hands. I was started on methotrexate and oral gold, but I ended up having a bad photosensitive reaction to the gold (I was out in the sun and everything I looked at turned silver and I got bad hives and ended up having to go to the ER). There are also drugs to treat the pain caused by RA, including NSAIDs (nonsteroidal anti-inflammatory drugs), COX-2 inhibitors, and prednisone, which is a steroid.
Since I’ve been diagnosed, my regimen has changed a couple different times for different reasons. After I had the reaction to the gold, I went on sulfasalazine and Plaquenil. I was on those for a while and then I had a reaction to the sulfasalazine. Then I went on a drug called Enbrel, which is one of a newer class of drugs called biologic agents. For the past 8-10 months I was giving myself injections of Enbrel twice a week and that was like a wonder drug—I felt really good on that drug. But now that my husband and I are trying to get pregnant, I’m only on prednisone, because Enbrel is contraindicated for pregnancy.
Did you have to make any lifestyle or dietary changes in response to your illness?
Yes. I had to slow way down, which was difficult, because I’m a really active person. I need to get enough sleep, otherwise my symptoms are worse. I need to make sure I maintain regular exercise, which is hard because a lot of times you don’t feel like exercising because you’re in pain.
Before I got RA, I did a lot of running and in-line skating, but now the best exercises for me are nonimpact or low-impact, such as speed walking, swimming, and bike riding (depending on how my wrists feel). When I was on methotrexate, I had to take folic acid and not drink any alcohol. While on prednisone, I have to take calcium and vitamin D to prevent osteoporosis.
Did you seek any type of emotional support?
At the suggestion of my rheumatologist, I got involved in the Arthritis Foundation. They’re a great resource for information and I also got involved in their self-help class. I took the class and then a couple years later they actually asked me to teach it. The foundation has provided great emotional support.
Does your condition have any impact on your family?
I think the biggest impact is probably on my husband. It’s stressful for him to see me wake up in the morning and limp across the floor or complain that my hands hurt or that my foot is swollen. I think it’s really hard on him.
What advice would you give to anyone living with this disease?
Find out as much as you can about the disease, so that you’re in control of it. Be assertive with your doctor to make sure all your questions are answered. And I definitely recommend getting involved in the Arthritis Foundation.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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