On cloudy and overcast days my lupus arthritis wakes me
On cloudy and overcast days, my lupus wakes me up differently than on sunny days. On these days, my first awakening awareness is pain in my limbs. Symptoms of lupus arthritis, such as joint pain, stiffness, warmth, joint redness and swelling are experienced by most lupus patients. Symptoms tend to be more intense in the morning, and usually improve a little more as each hour of the day passes.
I’m not really sure why, but my lupus arthritis always seems to be worse when it’s cloudy outside.
Increased morning joint pain is often one of the signs that my lupus is in flare. Usually, lupus arthritis symptoms involve the same joints in both hands or feet equally, and start first in joints at the tips of all my fingertips and toes. More intense flares of my lupus tend to result in bone and joint pain moving farther up in my limbs and deeper within my joints and extremities.
Deepest flares often involve deep pain and aching in the long limb bones between joints affected by lupus arthritis, especially inside the bones of my forearms and calves. In the most severe lupus arthritis flares, I can even experience deep pain and aching within my upper arm and thigh bones. These most pronounced lupus arthritis symptoms are almost always accompanied by muscle weakness, extreme fatigue, malaise, mouth/nasal ulcers, mental clouding and sometimes fever or cold sweats during my sleep. These are the roughest, darkest days.
Progressively deeper and higher wrist, elbow or shoulder pain, or foot, ankle, knee or hip pain can tell me that my current lupus flare is likely to be deeper and potentially longer lasting. As any given morning progresses, the speed and degree of alleviation of my lupus arthritis symptoms is sometimes a good indicator of the overall degree of a current lupus flare.
Quickly dissipating mild to moderate joint pain, stiffness and swelling are common daily symptoms of lupus. If this type of arthritis clears quickly, it does not usually signal any flare of my lupus. That is my “new normal” due to having lupus, and not alarming. It is the days that it doesn’t ease up that my arthritis is telling me that my lupus has moved into a more active mode.
The good news was it was lupus arthritis
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.