Inventory of Rheumatoid Disease: One Patient’s Experience
Ok, this brief awkward moment of my life is called “Inventory”
Many with Rheumatoid Disease are more severely affected than I am; others are milder. I am one woman. This is my experience.
You may remember this article on happiness inspired this list, but I put it aside for a few busy months. Now, I’ve come back to it because it seems valuable to present a more complete picture of one actual disease experience, so far. We’re definitely not all the same.
Finally writing this all down for the first time in 7 years, it doesn’t seem very bad. The worst part for me is how many of these problems occur every day, and there are NO days when joints, eyes, etc. are normal.
Have you ever made a list? I’m interested to see your stories!
Neck (cervical spine) – Years prior to diagnosis, I saw a neurologist for neck problems after two years of shooting pain down my arm. He obtained abnormal EMG results of “unknown cause.” I’ve been unable to look over my right shoulder for years, and recently reduced range of motion toward the left. If I look upward, I support my neck with my hands to stabilize it. When the neck joints are not swollen, bones move around producing clicking, popping sounds. The popping movement is noticeable 100 x per day and can be triggered by swallowing or slight head movement. It’s often loud enough that others in the room hear it. When the joints are inflamed there is visible swelling along the sides of the cervical spine. This leads to shooting arm pain, hand numbness, or severe headache, depending on which joint is inflamed. Multiple times, I’ve undergone radio frequency ablation, steroid injections, and epidurals. I’ve described my spine issues in more detail here.
Feet – Dramatic swelling, originally diagnosed as sesamoiditis, appeared overnight; swelling created 2 bunions; and 2 Tailor’s bunions. Prior to diagnosis, podiatrist stated that “splay” of middle toes signaled RA. Painful sensation of rocks under skin when walking. Swelling later decreased and bunions diminished. Pain and swelling later developed in mid-foot joints. Year three, tendons in right toes developed a constant pulling sensation as if too-tight socks are worn; eventually created bent mild hammertoe appearance in right middle toes; wearing shoes can temporarily “re-flatten” the toes. Cramping of both feet and toes. Movement of toes is severely limited compared to before RA diagnosis. Very difficult to walk in closed shoes; have purchased 3 pairs of pricey wide athletic shoes that cannot be tolerated. Shoes are painful if joints are touched; most shoes rub outside joints, which protrude. Plantar fasciitis and bone spurs over 30 years. Frequent numbness.
Knees – The first couple of years they never swelled, but they were stiff with frequent stabbing icepick pains. After 3 years, developed swollen lumps on the back of each knee. Eventually I took photos and showed one to Dr. Smart, who called it “Baker’s cysts” and added photo to medical chart. Swelling in the front of the knees is occasional and does not always correlate with pain or stiffness. After the first year of being swollen, the Baker’s cysts began to ache, and they hurt all the time now. My knees are often difficult to straighten. Once after a four-hour flight, they did not straighten for a few months. The Baker’s cysts have been present and often swollen for over three years and have never been examined by a doctor. I do point out that my knees are swollen and stiff and ask to have them examined. (I hope to find an orthopedist who uses ultrasound to extract fluid, but I realize it may return.)
Fever – Since the disease became full-blown about 7 years ago, I get a fever most days of about 2 degrees. It lasts a few hours and returns to 98.6. I own 4 digital thermometers.
Vocal cords (larynx) – Early in the progression, lost my voice completely for days at a time with no virus or cold symptoms. I had no idea my vocal cord problems were related to my Rheumatoid disease so at first, I didn’t complain to the doctor. There were so many baffling events that year and when you can’t feed your baby or wash your own hair, that takes precedence. Later, I read as much research as I could find about the Cricoarytenoid joints and RA. According to autopsy statistics, CA joints are commonly affected. A couple of years later, I began to have episodes when I could not breathe. It seemed like I was being choked and I struggled for air for up to a minute. It was terrifying for my family and me. Eventually, I learned it was connected to the vocal cord immobilization. The past couple of years, I have frequent hoarseness, but only occasional breathing problems.
Jaw joints – The jaw joints “flare” similarly to the shoulders. Some mornings, the jaw joints will be too stiff to open and one side or both will be very painful. Each time, I try to gently force the joint to move by forcing first a fingernail and later a finger between my teeth. With ibuprofen and my forced range of motion “therapy” I can eventually open enough to eat. Each episode can last hours or days. If I walk a lot, causing the inflammation to intensify, the jaw joints begin to hurt (along with all other joints).
Hands – Every joint in the hands is affected. I remember 7 years ago when it spread methodically to each joint, perfectly symmetrically. One day, the joint would stiffen and make a loud snap all day. Then, a day or so later, it would be tight and very painful. Except for being larger, hands look similar to when I was diagnosed, with slight deformity. My wedding ring got tighter and tighter (in spite of weight loss) until it was swollen around it and I had to have it cut off. The indentation remained for three years and is still faintly visible. I used to often say, “My hands aren’t affected much” – I still say it; however, whenever I washed my hands, I sighed involuntarily at the relief from the warm water. One finger is worse than the others. I received steroid injections in the DIP and PIP joints of that finger. At one point it was swollen for 3 yrs and did not bend much. It still swells occasionally, but I can now bend it over halfway. If I drive or use my hands for any task, they become very painful and stiff. They are very weak, compared to before the disease. They only swell occasionally, and usually appear normal, except for larger bones. I’ve always had loose skin on knuckles and palms, so when they swell the skin is tight. Since doctors told me they don’t look swollen, I take photos of both swollen and non-swollen to show the difference. When finger joints swell, a blue vein protrudes along the top. My DIP joints have always been worse than the MCP joints. Numbness in both hands. Cramping when I try to force them to do things, such as cut food or style hair. The joint at base of thumb comes loose so I drop things.
Elbows – Pretty simple. The same snapping noises as my fingers when they had their onset that first year. Occasional swelling, on the back. The joint is larger, weak, and sore if used. Occasional icepick pain. I had one pea-sized nodule on left elbow for 1 year, but it left during Enbrel (which I was allergic to, so go figure).
Ankles – Same as elbows, but no nodule. Occasional swelling, mostly on the right leg. The left ankle has limited range of motion and frequently snaps loudly.
Sternum / rib / clavicle joints – There is pain along the sternum on both the left and right sides. Always tender if touched. As with the vocal cords, I had no idea what was happening to me and did not complain to a doctor. Later, my 2nd rheumatologist used to examine it and say it was typically inflamed. That was one of the things that earned the nickname “Dr. Smart,” for diagnosing various joints based on examination. They get very inflamed from activity such as shopping or folding a lot of laundry.
Skin – After my feet, shoulders, and knees were involved, rashes began: first inside the left elbow, bright red; then spreading up and down to cover the whole side of the arm. After about 3 days, it hardened and flaked off. It stung. A few days later it began again, following the same pattern, but on both arms. This continued several months until I was established on methotrexate. During those same months, my face and upper torso turned bright red and hot a few times each day. The redness lasted about an hour. I have olive-toned skin and have never “blushed.” Edema. Deep impressions.
Blood vessels – Livedo reticularis, permanent for two years on left leg, and periodically in other locations. Frequent bleeding under skin on hands or feet with painful “bruising” with no injury or impact. Blood vessels swell. Black circles on toenails.
Eyes – I ignored eye dryness, not recognizing symptoms, again, because more urgent or painful issues took precedence. I was squinting and using sunglasses constantly, eventually even wearing them indoors in the evening because any amount of light was very uncomfortable. I finally saw an ophthalmologist. I’ve been treated for Sjögren’s for 5 years, including tear duct plugs and Restasis. My near and distance vision has declined quickly and my eyes are often sore or itchy.
Mouth – Dry. Related to the Sjögren’s, lips are constantly dry and peeling.
Hips – Like feet and shoulders, these have symptoms that go back far before diagnosis. After my first pregnancy, my hips would “go out,” one at a time and I would stumble as it came on. After 3 days, the flare of pain and weakness would subside, and hips seemed normal. This occurred after the births of each of my five children. Dr. Smart diagnosed bursitis in hips related to RA. Continue to experience occasional weakness and frequent pain.
SI joints – Tenderness, stiffness, pain. Usually “flare” symmetrically, making it difficult or impossible to walk. Accompanied by visible swelling. Prednisone is the only thing that helps.
Wrists – Snapping noises at onset same as fingers, elbows, and ankles. Usually appear normal. Have photographed when swollen. Dr. Smart diagnosed bogginess and effusion when they appeared normal to me. Usually have full range of motion when not inflamed. Always tender and frequent icepick pain. The first 3 years, I could not hold lightweight iron or soap bottle, but sometimes I now can for a short time. Since onset I can no longer bear weight, as with push-ups. Occasional popping sounds. Often, as I try to use my wrists, the hand and arm pull apart painfully.
Cardiovascular – Blood pressure is normally low; however I experience episodes of high blood pressure, usually lasting under one hour. Sometimes irregular heartbeat, and other times, feeling like my heart is in my throat. Shortness of breath.
Back – Degenerative disc disease (autoimmune). Ruptured disc. Muscle spasms. Episodes of numbness in feet or hands, lasting 30 minutes to 2 days.
Shoulders – After the feet, the shoulders were the first with severe flare, and like the feet, they had flared mildly for over 25 years. I was never sure which shoulder had the “unknown injury” because the flare always alternated sides. Soon after the toe joints “blew up” red, swollen, and twisted, I awoke at 2 a.m. with one shoulder feeling like it was shot with an arrow or a bullet. The pain took my breath away; I could only compare it to labor pain. Exactly one hour later, the other shoulder was the same. For several months, they were extremely sore and stiff. The shoulders never returned to normal, but only occasionally are as bad as that first night – so that I can’t move my arm even an inch away from my body, even pulling on it. I noticed a progression in the shoulders when I lie down: First year, when I lay on the left side, it hurt. The next year, if I lay on the shoulder it would hurt and then after a few seconds, my body would visibly drop about an inch as my shoulder slipped out of place. It was usually too painful and I shifted back onto my back. The next year, when I lay on the left side, the “drop” happened instantly. Eventually, there was no drop, but lying directly on the shoulder, it feels like my arm is ripping off. Left is slightly worse and was injected with steroids.
Constitutional symptoms – Loss of appetite, fever, weight loss, fatigue, muscle loss.
- Rheumatoid Arthritis Fevers
- Joint Injections for Rheumatoid Arthritis
- If the Gloves Come Off, We Might See the Irony of Rheumatoid Disease
- Advice on Rheumatoid Arthritis From the Perspective of a Polio Survivor
- Swollen Knees Are Smoother: The Glad Game in Rheumatoid Disease
NOTE: Your comments are an important resource for future readers of this post in the months to come. Please find the comment link below each post.Kelly Young. All rights reserved.