Road to Diagnosis: Racquel’s Rheumatoid Arthritis Story

It all started pretty quietly. A storm stalked me and hit all at once. In November 2001, my town had a hurricane. During that hurricane, I felt my body start to shift. I noticed some aches and pains in my hands, knees, hips, and feet days before, but nothing too alarming. As the hurricane developed around me, little did I know a storm was brewing inside of me.

By January 2002, I knew something was wrong with my body. My hands were stiff, and it was hard to extend my fingers. Simple things like opening a jar and holding a pen or cup were difficult and sometimes impossible.

My feet were in constant pain. My toes would lock up. They felt as if they were being crushed in a vice grip and stretched beyond the skin. Walking was a challenging task I did with care. 

At my job as a foster care social worker, I was barely functioning due to extreme fatigue and pure exhaustion. At first, I thought I had injured myself and was overworking.

As a former athlete, I often experienced aches and pains, so I shrugged off the changes as long as I could. After a while, I realized this was a different type of pain. It was consistently getting worse and stopping me from living a normal life. 

By September 2002, everything got worse. My hands wouldn’t cooperate, the pain moved from my fingers to my wrists and up to my arms. I couldn’t fully outstretch my arms. It felt like I was doing bear crawls on pins and needles. They were hot to the touch and tender. My feet were no better. I was forcing myself to walk without wincing and crying.

It took everything in me to do the basic things. I was struggling to simply live. Things that I often took for granted, like walking unassisted, opening a door, or writing my name, became chores that I didn’t want to do and couldn’t do without pain. At 33, I felt like an elderly woman in a frail body.

My husband convinced me to go to the doctor. Reluctantly, I made an appointment with my primary care physician at the end of September 2002. 

The doctor listened as I explained my situation. She checked my tender fingers and toes by pressing and moving them. She checked my range of motion by gently assisting me in moving my arms and legs slowly. 

After the examination and a few questions about my lifestyle, she decided we would start the diagnostic process with a hand specialist. She made this decision because of what she felt in my hands and the limited range of motion in my wrists and arms. She thought it could be carpal tunnel, a condition where a compressed nerve causes tingling in the hand, wrist, and forearm. 

I was still in a significant amount of pain, but I felt hopeful I might get the answers as to what was going on. That feeling of hope began to fade when I visited the hand specialist. 

In October 2002, I met with a hand specialist. He listened intently and asked questions, such as the length of time I had had the issue, whether it was constant pain, and whether there was a history of arthritis in my family (there was). 

The doctor then took X-rays to assess any potential issues with my bones or joints. He said the images didn’t show anything. His examination consisted of just looking me over. He didn’t touch any of the affected areas, which I thought was pretty odd. 

The doctor told me it wasn’t carpal tunnel, but it could be my weight messing with my body. I gave an odd look and asked, “What does that have to do with the pain in my hands and feet since I am not overweight?” He quickly began to backtrack, mumbling that weight is usually the cause of this type of pain. It threw me for a loop. I felt like he was pushing me off. 

After all this, he stated I was a “fascinoma.” I’d never heard the word before, but it turns out to be medical slang for an interesting or unusual case. He was puzzled and unsure of what was going on with me. 

With no obvious signs of a condition he could treat, he referred me to a rheumatologist, a doctor specializing in conditions affecting the joints, muscles, and bones.

When choosing a rheumatologist, the hand specialist laughed and asked, “Do you want a young doctor or an old doctor?” I explained to him that this wasn’t a laughing matter. I want a doctor who will listen to me and work with me rather than laugh at me.

This hand specialist made me feel uncomfortable. He was quite demeaning and nonchalant. I was so happy to move on.

I made my rheumatologist appointment for the following month. In the meantime, I was working in extreme pain. When I asked for help with the pain, all the doctors told me they didn’t want to prescribe anything without knowing what was going on. I was left to rely on over-the-counter (OTC) pain medications. 

In November 2002, my rheumatologist appointment arrived. I filled out all of the paperwork and talked to the doctor about my symptoms and family history.

The rheumatologist performed a full-body examination, X-rays, and a lot of bloodwork. I told my husband how thorough the rheumatologist was. It felt good after feeling laughed at and pushed off by the hand specialist. 

Sitting in that sterile examination room, I tried not to get my hopes up too high for an answer. Due to the significant inflammation I had, the doctor escalated the bloodwork, which was done in-house, and provided the results on the same day.

Based on my family history, his physical examination, and blood test results, he diagnosed me with rheumatoid arthritis (RA). I finally had a name for what was going on in my body. It was a relief, and equally, a big fear. 

Because my symptoms were so aggressive and rapidly worsening, my rheumatologist decided to treat my RA aggressively. I started high doses of steroids to bring down the swelling and reduce pain. Along with that, I was prescribed a chemotherapy drug commonly used to treat RA. 

About a year after I noticed initial symptoms, I had a name and a treatment in place. From the moment a name was given, I was changed. RA has forced me to be an advocate for myself and to trust what I feel in my body. It has taught me patience not only with doctors, but also with myself. 

This winding road to diagnosis, although uncertain and unpredictable, has taught me to continue speaking up and pushing for answers. I deserve to be heard and understood. Through this journey to diagnosis, I had to realize that my pain was “enough” to speak up about, so I could get the support and help I needed.