Living with Rheumatoid Arthritis

It took a lot longer than it should have to get a diagnosis of rheumatoid arthritis. Rheumatoid arthritis, or RA, is the most common form of autoimmune arthritis, but I suffered from chronic pain for almost a decade before I found out the cause. 

Doctors are supposed to listen; they’re supposed to help. When I first brought up the difficulty I had getting out of bed in the morning to my primary care doctor, he suggested that I had depression. At my next appointment, I was told, “you should exercise more often.” I guess I must have looked incredulous when he told me that, because he followed up with a referral to a physical therapist for my back and joint pain.

I wasn’t getting anywhere with my primary care provider, so I brought up my pain to my gynecologist when I was in for my annual check-up. “Could I have arthritis?” I wondered. She smiled and said, “No, you’re way too young to worry about that.”

The pain wasn’t getting any better––and then I did get depressed for real. This made getting a diagnosis even harder, because my doctor and psychiatrist were convinced that the depression was the source of my physical pain. I wanted to cry out of frustration as I tried to explain to them that, no, I was depressed because of the pain. Every appointment felt like screaming into the void––I’m telling you what’s wrong and you just don’t hear me.

As the pain worsened, a new symptom cropped up: swelling. My hands and feet were swollen all the time. I finally had visible proof that something was wrong, but I still couldn’t get the answers I needed. Now the new culprit for my symptoms, according to my doctor, was my weight. If I could only lose 20 pounds, he was sure I’d start feeling better.

I should pause to mention the impact the chronic pain was having on my life. I am a small business owner; I don’t have the ability to take a sick day when I’m not feeling great. Whenever I had to take time off of work, I lost income. My decrease in income put a strain on my family’s finances. We thought about having my husband find a second job, but I was in so much pain that I couldn’t do anything around the house either––he was needed at home to cook, give the kids a bath, do the laundry, etc. Our marriage was straining under the pressure of him having to do so much while I felt helpless. Sometimes I even wondered if he agreed with my doctors, that I was exaggerating the pain or that it was all in my head.

I had to give up all of my hobbies. No more gardening. I couldn’t hold a paintbrush to paint. We loved to travel, but it felt like a waste of money when we’d go somewhere and I couldn’t do anything. When the pain first started, I had good days and bad days, but after several years, the bad days began to outweigh the good. Even taking care of myself––brushing my teeth, washing my hair––became excruciating. Clothes with buttons sat at the bottom of my drawers and the back of the closet, unworn because I no longer had the finger dexterity to push a button through a buttonhole.

It was my fingers that helped me finally get a diagnosis. They were becoming deformed, developing embarrassing nodules. When my doctor ordered an x-ray, it showed advanced arthritis. I was vindicated, but he never apologized for the years of brushing off my pain. He matter-of-factly referred me to a rheumatologist for blood work and sent me on my way.

I had high levels of rheumatoid factor in my blood, along with an antibody called anti-CCP that is a marker for rheumatoid arthritis. Testing showed high levels of inflammatory markers, too––all signs pointed to a diagnosis of rheumatoid arthritis.

I was happy to find a compassionate rheumatologist and finally have the answers I had been seeking for the past ten years. Unfortunately, my husband and I had decided to move to be closer to our families so they could help us during my flares. This meant that I needed to find another rheumatologist. The thought of leaving my rheumatologist made moving fraught with stress. I didn’t want to go through the process of finding a doctor who would listen all over again.

Once I got my diagnosis, I began connecting with other people who have RA online. There were so many people out there with stories just like mine. I no longer felt alone. I also started feeling angry that so many of us have searched so long for answers; that we all suffered in pain for years. And, that because we were not diagnosed at the onset of our disease, we now had permanent damage to our bodies as a result. 

I gathered a lot of tips and life hacks from the Facebook groups I was in––button hooks to help with getting dressed, easy-grip tools to help me get back in the garden again. I also learned that many patients had the best results when they took an integrated approach to treating their RA. This meant seeing a team of specialists to help with the RA itself, the pain, and lifestyle factors––a rheumatologist, a pain specialist, a physical therapist, and even a dietician.

I truly believe that the stars aligned when we decided to move back home. Not only am I now surrounded by the support of my family and lifelong friends, I’ve also found the most amazing team of doctors. My rheumatologist truly cares and listens. She remembers the little details I share from appointment-to-appointment and she works closely with my pain management specialist to come up with a treatment plan that addresses both my rheumatoid arthritis and my pain. Our shared goal is to stop further damage from occurring, treat my existing pain, and increase my quality of life so I can be an active participant in my family again.

What works for one patient’s RA might not work for someone else’s and it can take some time to find an effective treatment plan. Mine includes a medication to slow the progression of my rheumatoid arthritis, occupational therapy to help me regain function, and medication to reduce inflammation and pain. More generally speaking, treatment options for rheumatoid arthritis include:

• Steroids, which reduce inflammation, pain, and joint damage. These are usually prescribed on a temporary basis to get symptoms under control.
• Nonsteroidal anti-inflammatory drugs (NSAIDs), for relieving pain and inflammation.
• Disease-modifying anti rheumatic drugs (DMARDs), which slow the progression of rheumatoid arthritis, preventing further damage.
• Biologic response modifiers, often referred to as biologics. These are a type of DMARD that targets the parts of the immune system that are attacking your joints and causing damage. These are often paired with a traditional DMARD.
• Repairing damaged joints through surgery, including synovectomy (removing inflamed joint lining), tendon repair, joint fusion to stabilize or realign a joint, and total joint replacement.

I’ve also found that low impact exercise helps. Gentle yoga, for example, can strengthen muscles around the joints. Other patients enjoy tai chi, both for the gentle movements and the relaxing deep breathing. Unlike what my first doctor had told me, exercise does not make the pain go away, but it feels good to be active in a way that’s right for my body. I won’t be running a marathon any time soon, but yoga gets me up and moving and feeling present in my body again.

Changing my diet has helped too. I stick with fruits, vegetables, healthy fats, and whole grains. When my flares were bad, it was easy for us to subsist on takeout, frozen meals, and fast food because I couldn’t cook and I felt guilty asking my husband to make dinner from scratch every night after a long day at work. Now, through working with my occupational therapist and my medical treatments, I’m able to cook for my family again. On weekends, I prepare big batches of steamed and roasted vegetables, whole grains like quinoa and farro, and sauces that are full of healthy oils for us to eat throughout the week.

CORE Medical & Wellness understands the impact of autoimmune disorders and chronic pain on a patient’s quality of life. We are committed to listening to you and working together to help restore function and mobility to your joints. Call us today at 888-521-0688 to schedule an appointment with Dr. Jenny Gartshteyn.