Rheumatoid Arthritis and Fibromyalgia: An Interview with RA Expert Lene Andersen
Today, May 12, 2011 is National Fibromyalgia Awareness Day and the month of May is National Arthritis Awareness Month. In honor of those two occasions and because a number of our community members are living with both fibromyalgia and rheumatoid arthritis, Lene Andersen, the Community Leader for HealthCentral’s RA site, and I interviewed each other about RA and FM. You can read Lene’s interview with me and get more information about RA at MyRACentral.
Lene Andersen is the Community Leader for MyRACentral, our rheumatoid arthritis site. She has lived with RA for over 40 years, experiencing her first symptoms at age four, and has used a power wheelchair since she was 16. She developed fibromyalgia in 2004. Lene has a Masters degree in social work and has worked in corrections and the human rights field, but changed career tracks and is now working as a writer, health and disability activist and photographer.
Karen: What is rheumatoid arthritis?
Lene: RA is an autoimmune disease. This means that the immune system attacks the body’s healthy tissues. In RA, this causes inflammation of the joints that can cause bone erosion, deformities and disability. RA is also known as a systemic disease, as it can also affect internal organs. At present, we don’t know what causes RA, although theories include a genetic predisposition and a triggering event.
Uncontrolled RA comes with high levels of chronic pain, and damaged joints cause pain, as well. In addition, there is a significant fatigue factor. RA affects approximately 1% of the population - that’s about 1.3 million in the US - and affects women almost three times more often than men. It usually develops between the ages of 30 and 60 and can also affect children. You can read more in MyRACentral’s basics of RA area.
KLR: How is RA diagnosed?
LA: RA is notorious for being hard to diagnose, especially in the beginning. It’s quite common to have to see more than one doctor in order to get a diagnosis. Most good rheumatologists diagnose RA based on a medical history and physical exam, using blood tests as confirming rather than a diagnostic test. Twenty to 30% of people with RA are seronegative, which means the rheumatoid factor blood test is negative. Not all doctors are aware of this, so if you think you may have RA and your primary care physician say that your blood tests are negative, insist on a referral to a rheumatologist.
KLR: How does RA differ from other types of arthritis?
LA: When you mention arthritis, most people connect the term to osteoarthritis - a degenerative joint disease (wear and tear) that often develops as you grow older. RA is inflammatory arthritis and a disease of the autoimmune system that can also affect internal organs, muscles and tendons.
KLR: Who treats RA and what treatments are available?
LA: RA is treated by rheumatologists. The first goal of treatment is to control the inflammation, which is achieved by taking one of the DMARDs (disease modifying antirheumatic drugs). Many of these drugs suppress the immune system, which can make you more susceptible to infection. However, most people have very manageable side effects. It’s common to have to try several medications before you find something that works well.
People with RA may also take NSAIDs (nonsteroidal anti-inflammatory drugs) for relief of some inflammation or other painkillers, including opioids. Some rheumatologists manage both the inflammation and pain of RA, but others refer to pain specialists for pain management.
KLR: What is the prognosis for people with RA?
LA: In the past, the prognosis of RA was pretty grim and the goal of treatment was to merely delay deformity and disability. In the last 10 years or so, a new treatment called Biologics has come on the market and they have made it possible for many to actually go into remission. This has changed the treatment approach to one of early and aggressive treatment, which can feel overwhelming when you’re new to the disease, but the faster you get your joints protected, the sooner you can get back to living your life.
KLR: If you could just give one piece of advice to someone newly diagnosed with RA, what would it be?
LA: Take control of your medical care. Make sure you’re informed about your disease and possible treatments, develop your self advocacy skills and find a good rheumatologist who will work with you and understand that you are the person in charge of your medical care. We have a post for people who are new to RA that covers many other aspects of living well with the disease.
KLR: We often hear that the pain of fibromyalgia is as bad or worse than RA.Since you have been diagnosed with both, in your experience, how do they compare?
LA: It’s two completely different kinds of pain, but they can be similar in intensity. RA pain feels more internal, a bone grinding deep ache, whereas fibro pain feels more like your body is having hysterics. Over the years, I have described pain in many different ways, but I never called it “loud” until I experienced fibromyalgia pain.
KLR: Developing effective coping tools is an important part of learning to live with both RA and FM.Which coping tools work best for you and do they differ for RA and FM?
LA: When I first got fibromyalgia, I had a really rough time. None of the coping tools I had for RA worked for fibro and it took me a long time to figure out what I had to do. For instance, RA pain can be eased by staying still - you don’t want to do that too much, though, or you may lose mobility - but if you stay still with fibromyalgia pain, your body seizes up more and the pain intensifies. These days, I twitch a lot, frequently shift positions and move around every 30 min. or so to make a cup of tea, get a snack, bug the cat, etc. It makes me a nightmare as a movie watching companion, but it keeps the pain down to a dull roar.
Another important coping tool is to stay warm and that works for both RA and fibro. However, it’s even more important for fibromyalgia because if I get cold, my fibro goes nuts and it can take days to get ahead of the pain again. A lot of people with fibromyalgia have a weak area, a part of their body that is more sensitive and often involved in triggering a flare. For me, it’s my shoulders and neck, so I always wear a sweater and scarf. Luckily, scarves are trendy right now, so works as a fashion statement, too I also make sure I never sit below an air-conditioning vent. If my fibromyalgia pain is bad, I try to make myself sweat, as it tends to break the cycle of muscle spasms. I’m currently taking Humira, one of the biologic drugs, for my RA and it has a side effect called “warmth.” It’s sort of heats you up from the inside, which can feel like hot flashes and this particular side effect is working very well for my fibromyalgia!
Managing energy is also essential and I struggled a lot with learning to stop before my body is screaming at me. Reading about the Spoon Theory was a tremendous help to me because it allowed me to visualize my energy as limited resource. It was another big step for me the day I realized that you shouldn’t end every day exhausted - it should be reserved for special occasions. I learned to adjust my to-do list based on my energy level instead of ludicrously high expectations of what I “should” be able to do. Setting more attainable goals means that in the long term, my pain level is so much more manageable. As well, since I’m no longer spending several days a week exhausted, doing less every day actually allows me to do more overall.
KLR: Most of us living with chronic pain can easily list the negatives - like the losses we’ve experienced (i.e., career, friends, lifestyle) - but I’ve found there are also positive things we can gain from our chronic pain experience. Please share one or more positive changes you’ve experienced.
LA: RA can give, as well as take and that goes for chronic pain, as well. It’s taught me resilience and given me the strength to get back up when life knocks me down. It’s taught me that pain isn’t the worst thing that can happen: not living your life is. And it’s taught me to focus on the positive, which helps to create real happiness and to live life to the fullest, even when I have to do so within certain limitations. I think I’m probably a happier person because of having RA and chronic pain.
KLR: Thank you, Lene, for sharing your knowledge of and experiences with both RA and FM.You’ve given us some great tips that we can use to make our own lives less painful and more fulfilling.
Co-Founder of the National Fibromyalgia Assn.