Balancing RA and Fibromyalgia
As much as a quarter of all people with RA also live with fibromyalgia. Columnist Lene Andersen shares how she manages both.
It was a kind of pain I had never felt before, even in my then 30+ years of living with rheumatoid arthritis (RA). This was a pain that had a volume akin to a fire alarm blaring right next to my ear. It was a constant white noise that obliterated thought and memory and focus, accompanied by unrelenting fatigue.
New and scary symptoms ruled my every day, jumping from one area of my body to the next. The slightest pressure felt like I was being stabbed with a knife and the seam on my underpants caused excruciating pain and tingling in my limbs. My digestive system was in an uproar, my tongue was burning and hypersensitive to textured or crunchy foods, and the music I loved now sounded like a cacophony. My body was in hysterics and so was I, tipping over into constant panic and uncontrollable anger. I felt like I was losing my mind.
Conversations with my family saved me. My mother had been diagnosed with fibromyalgia several years earlier and when I listened to her story and symptoms, my own experience began to make sense. It took another six months for my doctors to agree with my self-diagnosis: I had fibromyalgia. That was the beginning of me learning to manage co-existing conditions with overlapping symptoms that needed very different coping techniques. And I’m not alone. Comorbidities—that is, other conditions that are associated with a primary diagnosis—are common with RA. So how do you figure out juggling necessary care for two (or more) different conditions?
When you’ve lived with a chronic illness for a long time, you forget what it felt like in the beginning. The confusion of unpredictable and alarming symptoms, the downright terror as your body is invaded by frightening new sensations of unknown origin; the feeling of helplessness as nothing you do gives you relief. The despair of seeing doctor after doctor without getting answers, some even suggesting that you’re not sick but “just stressed,” even though you know that any stress you have is due to your life being hijacked and irrevocably changed.
Your previous experience with RA can be a tremendous help at this early stage of mystery symptoms. The skills you have developed to manage symptoms and medication, adjust your actions based on how you feel, and cope emotionally are all part of your chronic illness superpower. These skills are transferable to your journey toward diagnosing and figuring out how to manage a new condition.
Learning to manage multiple conditions starts with providing your doctors with the information. This can help them find answers for you. Track your symptoms, either by using an app that can compile a report for your doctor or summarizing your notebook scribbles. These notes can also include any other patterns you may have noticed, such as when your symptoms increase or decrease and how they differ from your existing RA symptoms.
Here’s another thing you’ve probably learned from RA: Figuring things out takes time. Patience and self-compassion are key factors in the journey. Try not to beat yourself up if you’re unexpectedly sideswiped by new symptoms or when something you do to manage your RA increases symptoms of your other condition. Pay close attention to your body, take note of how you’re feeling—journaling can be a great way to process what’s happening—and keep the lines of communication open with your doctors.
My early days with fibromyalgia were incredibly frustrating, as all the tricks I used to manage my RA seemed to have the opposite effect on fibromyalgia pain. For instance, resting and being still can be helpful in a severe RA flare, but lack of movement made my fibromyalgia muscle pain shoot into the stratosphere. It took months to learn that being still now made my muscles seize up, but eventually it became second nature to move every 20 minutes or so when my fibromyalgia is flaring. I’ll do some stretches, make a cup of tea, or annoy the cat and then go back to what I was doing.
Separating which symptom belongs to which condition can be a challenge. This is true especially so when they overlap. In my case, both RA and fibromyalgia cause pain, fatigue, and brain fog, but over time I learned the subtle differences. For me, RA pain tends to be deeper into the bone, have a throb and a thrum, and can be eased by sitting still. On the other hand, fibromyalgia pain tends to affect the top layers of my body, like muscles that have been tensed for hours, and responds to movement. As well, although I feel that the fatigue hits with the same impact, my brain fog increased significantly once I had fibromyalgia. Learning how other people experienced my conditions was a valuable tool for me to suss out what was happening—and it might be for you, as well. That said, it’s important to keep in mind that everyone probably reacts a little differently.
I also learned that, on a medication level, managing one condition can help the other. When I first developed fibromyalgia, I was in the middle of an intense and months-long RA flare and they fanned each other’s flames into six-alarm fires. My doctor prescribed a biologic to treat my RA and as it started working, the fibromyalgia pain decreased (although it never disappeared entirely). That means my RA medication is an essential tool for managing both of these conditions. Unfortunately, there is not yet an equivalent to treating fibromyalgia and my rheumatologist is as frustrated as I am about her inability to help with anything other than symptom control.
Finding a community of others like you is important with RA and with other conditions. Whether you’re adding fibromyalgia, diabetes, high blood pressure, or another comorbidity, learning more about your condition and how to cope is much easier when you can talk to others who have been on the journey before you. I follow people and sites in the fibromyalgia community who share information about the developing literature about this condition. On the coping front, I was lucky to have my mother as a fibromyalgia mentor and several years later, we both mentored my sister as she got this condition, as well. The three of us text and call each other whenever yet another strange fibromyalgia symptom appears or a flare hits just before the weather turns. This small three-member support group helps us feel validated as we live life with this challenging condition.
Learning to manage your RA along with one or more other chronic conditions can test your patience and composure. When things get stressful, remember that you’ve been here before. The skills you’ve learned for managing your RA can help you with any other health issue, as well. So tap into the part of you that knows how to do this and above all, trust yourself. You’ve got this.
