One Patient's Positive Perspectives

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.

BLOG September 2014 POSTLOG:

This post has surprised me with the ongoing interest it receives.  It continues to be one of the top ten favorites among the readership of Lupus Adventures, remaining weekly in the top ten posts among my readers ever since it was published over three years ago.  I would like to share this excellent educational information regarding the use of biologics to treat autoimmune disease.  I would suggest readers review a recent excellent article, Find the Best Medications for Rheumatoid Arthritis: overview, full report, and cost comparison of 18 drug options for rheumatoid arthritis, at Healthline.com about how biologics are used to treat Rheumatoid Arthritis, especially because of the close relationship between RA and Lupus, and the common drugs used to treat both conditions. See, http://www.healthline.com/health/consumer-reports-rheumatoid-arthritis.

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Comments on: "Lupus arthritis on a cloudy day…" (4)

  1. […] 7. Lupus arthritis on a cloudy day… – March 20, 2011 – 870 views […]

  2. I love your post!!! I am still in the process of trying to get a diagnosis for 7 years!
    My records say “unexplained arthiritis and unspecific Autoimmune disorder”
    I have been diagnosed with Hypothyroid, Sjörgrens syndrome and Fibomalygia.
    But my joints are so bad in the morning that I cannot get up! They took X-rays of my feet, knees and elbows, I am waiting on results.
    If someone out there wants to be email buddies my story is very long. But I love your post. Everything you said I have also. But my dr is not very eager to help. I think he does not believe me.
    Sonjatxfh@gmail.com

    • Sonja: Thank you so much for your blog visit. I would encourage you to continue to develop your persistent and polite conversation with your doctor. He only knows first hand what he can see or measure with tests.

      Everything you tell him will mean more over time as he zeros in on a clearer diagnosis, and he hears your subjective symptoms repeatedly. Don’t lose patience! Doctors tend to diagnose more slowly when all the necessary information for the diagnosis is not observable to their eyes or by clear lab tests.

      Lupus and many other autoimmune conditions are somewhat invisible diseases, and lupus shows up differently in each patient, and changes how it behaves in the same patient. Patient patience is needed.

      It is a positive thing that you have some clear areas of diagnosis. Sjogrens and fibromyalgia can also be secondary to lupus, or primary all by themselves.

      If you are not yet seeing a rheumatologist to look at all these autoimmune issues together, I would encourage you to do that, even if only for a second opinion.

      If you haven’t yet checked out the 11 lupus diagnostic criteria, you might want to do that, too and take a copy to your doctor if he is not a rheumatologist. See that at the Lupus Foundation of America web site @ http://www.lupus.org and the article about the 11 diagnostic criteria of lupus, “Common Symptoms of Lupus” @ http://www.lupus.org/webmodules/webarticlesnet/templates/?a=2241&z=524

      Thanks, again for your comment, and feel free to contact me by email (link on the “About the Adventure” page or drop a comment on a post or general comments if you have questions.

      Best wishes on your autoimmune adventure! LA

  3. the only thing that have decreased is pilats.

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