When my rheumatologist first examined me, he included many lab and radiology tests. When he was finally able to tell me what was “wrong” with me, he asked if I wanted the good or the bad news first. I asked for the good news, and his reply was “its not rheumatoid arthritis.” Okay, so the bad news was it was lupus!
My doctor explained that the reason not having rheumatoid arthritis was such good news, was because rheumatoid arthritis destroys bony joint tissue, while lupus arthritis attacks the connective tissue instead. He showed me the x-rays of my stiff and swollen hands, and explained that the lack of bony damage along with my severe inflammation was a sure sign that it was lupus arthritis and not RA.
On the exterior, my reddened ballooning finger joints looked distorted and disfiguring. But, on the inside, there was no deformity in my finger bones. My hand inflammation was all located in the soft tissue of my joints and this was better news than an RA patient would get with hands that looked as bad as mine. There was hope my hands would feel and function better again with the right treatment.
So, for many years after my initial lupus diagnosis, I took an anti-inflammatory drug to reduce the swelling, plaquenil to control my lupus, and steroids during periods of the most extreme joint inflammation. This made a great difference in restoring a great deal of mobility, strength and activity to my daily life.
One-handed stapling hurt my finger joints
Once I understood that it was soft-tissue in my joints that was under attack, I began changing certain behaviors that had a tendency of stressing my joints. At work, I realized my finger joints were being strained and swelling from picking up and using a stapler in one hand to fasten legal papers.
I requested an electronic stapler as a simple ADA accommodation and it made a great difference in preventing joint inflammation. However, my electronic stapler started a trend, and other workers wanted them. It was a small price to pay for improving this aspect of ergonomics throughout my entire legal office.
One of our homes came complete with a flight of stairs. Many times my knee pain was so disabling that my husband had had to carry me up the stairs. This might seem a little romantic, but we knew we needed to change the living situation for my health.
After awhile, my husband and I determined it would be better for me if we moved to a home where everything was on the ground floor. This helped me not aggravate my fragile knee ligaments that had made climbing stairs impossible for weeks at a time. I even stopped using stairs at work, and began using wheel chair ramps and elevators to protect my damaged knees.
Climbing stairs hurt my knee tendons
I still get caught off guard occasionally during a fire drill at work, and have to descend a couple of flights of stairs. For days afterward, my knees suffer and walking is very difficult. Thankfully, I miss most of the fire drills when they take place early enough in the morning to be over before I get to work.
I eventually learned more about my limits. For instance, my lupus arthritis would not allow me to walk all day at a mall, or walk miles for exercise. I also found I could not use a treadmill, without causing pain and swelling in my knees and foot joints. So, I found some alternative, no-impact exercises that were easier on my arthritic joints: yoga, cycling indoors on a fluid trainer (away from the sun,) and indoor swimming.
I changed my philosophy toward doing housework. I no longer try to vacuum, sweep or mop my whole house in one day. Instead I do things in smaller, incremental pieces. I clean the floor in one room and wait to clean another room the next day. I no longer try to do all my laundry in one day, but instead wash and dry one load, and then wait for a different day to do the next load.
Now, taking care of my joints is just part of taking care of the whole “me.” They talk to me, and I listen. Once, I shredded an inflamed calf tendon from over exertion. Now, when my tendons and joints speak to me, I slow down and heed their warnings of the possible lupus flare ahead. I baby my joints, yet I exercise them regularly to strengthen them, too!
Lupus arthritis gives me the most challenge on cloudy, overcast days like today. But, slowing down to live within my physical limits, is the key to maintaining my maximum possible mobility.