One Patient's Positive Perspectives

Posts tagged ‘Autoimmunity’

Lupus in a Victimless Life – Despite Limitations

Series: Lupus in a Victimless Life

Butterfly on yellow daisy

This is the second discussion in a series about being a Lupus patient or someone with any chronic illness, without becoming a victim.  Society tells us we are victims of the things that make life difficult, but do we really need to see ourselves that way?  No, not even for a minute!

Having Lupus should not mean being victim or powerless against it.  Although we cannot choose whether we have Lupus, determining not to be its victim is matter of mindset and even a choice.  When special events or activities in our life disrupt our normal routines and schedules, it becomes very important to be on guard for signs of physical or other stress.  Stress or fatigue may signal increased risk of bringing on a flare of lupus symptoms.

WP_20180502_18_45_00_ProA recent trip to attend a business conference was an excellent example of this type of self-management that often minimizes the impact of potential lupus flares.  Recently joining about 1,000 peers from all over the nation at an educational conference in Washington, D.C., we gathered at a large resort on the Potomac River for five days of classes and continuing legal management education.  With breakfast starting very early, and classes going all day long, by sunset, everyone was tired.  There were many extra steps going to and fro from class to class, and every situation and conversation was a new experience.  This type of event interacting with countless people and ideas easily causes both physical and emotional fatigue.  This conference was no exception.

Hands Holding Book ReadingSelecting how to best spend the free time in the evenings included a wide array of choices, from dining with old and new found friends to taking shopping trips, going on walks, taking in local entertainment.  The conservative choice was spending the night quietly in a hotel room reading a book or eating a takeout meal, while resting with feet propped on a pillow.  Predictably, most evenings were spent pursuing a sedentary evening that helped prevent over-exertion, while also promoting restoration necessary before the next day’s demanding schedule.  Wisdom is listening to the physical needs of your body, and recognizing without angst that lupus narrows those limits.  It seemed the best idea was the wise one.

WP_20180503_20_03_18_ProBut, of course, a little fun, within physical limits was necessary!  One night, opting to accept the invitation to take a sunset walk with attendees from our local chapter sounded fun!  Midway through our jaunt, it suddenly seemed best to sit and rest midway while the others in our group explored shops at the bottom of a long, long flight of steps heading down toward the shore.  At complete peace with self and lupus limitations, skipping the stairs was an instant no-brainer.  Besides, it was a great opportunity to do some great people-watching.  When everyone else reached the top of the stairway again and reunited our group, we finished the second half of our twilight stroll through the remaining street level shops near our hotel.  The activity was pleasantly enough, without being too much.

Despite the Limitations of Lupus

LA Blog Wordle 2013The onset of Lupus clearly changes a person’s life, sometimes very dramatically.  Whether their presenting symptoms are arthritis, rashes, or perhaps a more serious aspect of Lupus, their life definitely changes.  Often, many lupus patients experience fatigue, pain, and other symptoms long before they ever receive the diagnosis.

After learning that Lupus is the cause of their medical problems, a person often has a great sense of relief, as well as hope that things will improve.  The average patient experiences Lupus symptoms four to six years and sees up to the same number of doctors before getting a clear diagnosis of Lupus.  Many describe the great sense of relief they feel after finally getting a one word diagnosis to describe their collection of multiple medical symptoms.

Doctor with clipboard 2With the diagnosis comes the welcome change of a decisive treatment plan and prescriptions for well-established treatments to help control the lupus.  Often the counsel from doctors and other knowledgeable counselors encourage changes in lifestyle and attentiveness to recognizing physical limitations.  Each lupus patient has their own unique set of symptoms and circumstances influencing their quality of life, despite lupus.  In the same patient, flares of their Lupus may suddenly narrow those limitations and frustrate their life goals and plans.

Over work or inadequate rest can quickly bring on extreme fatigue and lupus flare, so it is critical to learn to perceive physical, psychological, and spiritual signs of weariness, and then to take quick actions to retract the limits temporarily to quash or prevent an oncoming flare of lupus.  For many patients, the onset of extreme fatigue is the first symptom as a flare is starting, so becoming intentional about managing social commitments and activity in balance with physical stamina can go a long, long way to minimizing the length and severity of flares, when they do occur (and they will!).

doctor talking with patientLiving within the limits of Lupus may involve a strict regimen of medications, laboratory tests, and medical appointments, along with costs that that restrict a household budget.  Moderate physical exercise can help increase the physical limitations by encouraging good circulation and promoting tissue health and repair.  Adequate sleep becomes invaluable in fighting many of the affects of lupus, and can diminish some of the morning mental clouding that many patients experience daily.  Communicating with the rheumatologist becomes very important if arthritis or neuropathy pain disrupts sleep, and being willing to ask for and take pain medications can be essential to fighting the negative effects of lupus.

bf resting on benchAll in all, we can choose to make the most of what we have, despite lupus, and accept that lupus may make our life and limitations different than others.  Take a the time to you need to slow down, without letting this need frustrate you.  In the stillness of those quieter moments, focus on the blessings around you, and determine to embrace your limitations rather than becoming a victim of them.  Perhaps consider these thoughts penned by Paul of Tarsus, who also had a life-long chronic illness but embraced the ideas that his weaknesses and limitations were a blessing.  He wished his illness would go away, but he was no victim!

stock-photo-woman-reading-the-bible-in-the-darkness-over-wooden-table-277354922“For this thing I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.” 2 Corinthians 12:7-10, KJV




Living with Lupus: Fact #24 – Lupus in Families

Living with Lupus: Only 10 percent of people with lupus will have a close relative who has lupus or may develop lupus, and only five percent of children born to a mother with lupus will develop the disease.

Inherited autoimmunity

The Lupus Site, asks and answers:

“Can lupus run in families?  Yes. This was first observed in the 1950s. More recent studies show that the brother or sister of a lupus patient is 25 times more likely to develop lupus than someone in the general population.”

“When lupus runs in families, is the reason genes or environment? As in most human disease, the answer appears to be “both.” Lupus has strong genetic components. It has environmental components as well.”

Lupus and genetics

In a past issue of Lupus Now, Jenny Thorn Palter shares an interesting story about sisters with lupus, and reports a prominent researcher’s explanation of twins and the genetics of autoimmunity:

“Christina Gomez, 21, and her younger sister, Adriana, 19, of Ontario, CA, know a little something about genetics. They both have lupus.”

human chromosome

“According to Frederick W. Miller, M.D., Ph.D., chief of the Environmental Autoimmunity Group, National Institute of Environmental Health Sciences at the National Institutes of Health, research shows that there is a 10 percent to 25 percent chance that an identical twin will develop lupus if the other one already has it.”

“This drops to a two percent to five percent chance among non-identical twins. Compared with the approximately 0.08 percent frequency of lupus in the general population, this suggests that lupus has an important genetic component. Studies also suggest that the likelihood of developing other autoimmune diseases is higher in families in which a person has lupus.”

“Miller puts it this way: ‘There are multiple shared autoimmune disease genes that can get you into the theater of autoimmunity, and then there are other disease-specific genes, and probably certain environmental exposures, that escort you to your particular seat.’ “

 ” ‘There are few absolutely ‘good’ or ‘bad’ genes or environmental factors, Miller says. ‘Rather, the environment in which a gene operates defines how useful or harmful that gene will be, just as the genetic background of a person often determines the extent of the effects of environmental exposures.’ “

Lupus in families

Singing a lupus solo.

So far as I know, in my whole extended family, I am the only one diagnosed with systemic lupus.

My family has other autoimmune conditions, but no one else has been diagnosed with lupus. My niece is showing signs of possible lupus, including some kidney problems, and is seeing a nephrologist but has not been diagnosed with lupus.

Our children inherited autoimmune psoriasis from their father, and from his father before him.

singing a lupus solo

My husband and me, our children, our nieces and nephews, and some of our grandchildren have allergies with asthma.

My maternal grandmother had rheumatoid arthritis and diabetes.

My mother had asthma and gout.

My sister had autoimmune thyroid disease.

Despite our familial bevy of autoimmune conditions, I am singing the lupus song all by myself.

Coping with Lupus: Fact #14 – Balanced Exercise and Rest Maintains Strength

Coping with Lupus: People with lupus are usually encouraged to engage in appropriate daily exercise to keep up muscle and bone strength.  Exercise is not intuitive for those with auto-immune health challenges like lupus, rheumatoid arthritis or fibromyalgia.  Waking up each morning with joint stiffness and pain, the first thought on my mind is definitely NOT exercise!

My natural inclination is a long hot tub bath or jacuzzi soak to wrap warm comfort around  aching joints, or perhaps sipping coffee in bed while waiting for analgesic and morning prednisone medications to “kick in.”

Are you kidding?

Exercise?  Are you kidding?

Yes, our doctors all tell us (and everyone without auto-immune disease, too) to exercise!  Why is the idea so repugnant to us?  Simply because we hurt!  The idea of moving and getting up to shake up painful joints is simply counter-intuitive.  We can’t imagine that when moving hurts, doing more of it will make us hurt less.  But, the truth is that moving gently and getting some mild exercise WILL help manage and relieve pain.  Trust me, believe your doctor, and if you are not getting any or enough gentle exercise, I urge you to consider starting.

With a membership in a health club, I could swim in an indoor pool — it was invigorating!  Some days, I work through some simple yoga exercises that help stimulate my deep breathing and encourage circulation in joints, tendons and cartilage using gentle controlled movement and balance — it is refreshing!  Other days, I get on my bike, with its rear wheel nestled in its indoor fluid trainer stand (a normal exercise bicycle works well, too) and spin for as few as ten or as many as 30 minutes – it is strength-building!

What about when I hurt?

What about the bad days?

On days I hurt the worst, I do just a few minutes of the simplest yoga moves or spin on the bike for no more than 10 minutes.  The goal is just to stir up a little circulation and get my joints in motion, and to stir up a little adrenaline to get me feeling like moving.  Almost always, the gentle movement results in a lowering of my perceived level of pain, and puts my body into a more energetic state.

With a little more adrenaline flowing, and a natural rise in body endorphin levels, my ability to handle the pain increases, and my perception of the pain decreases.  It’s just the biology of movement, nothing more.  This is the effect of exercise that is so counter-intuitive to the pain.  You don’t naturally think it will happen when you feel like stilling still, because every motion of your joints hurts.

Balance exercise and rest!

Balancing exercise and rest – remember moderation!

Take care to balance exercise with rest or when you hurt.  Our doctors rightly tell us not to overdo, or to move in ways that cause more pain.  The right amount of exercise, done with moderation and restraint, should help the pain decrease almost immediately when you start moving.  Increasing pain means it is time to stop the exercise.  Caution to take things slowly is always first when thinking about exercise.

It may take a while to build up to enough exercise to get an aerobic effect.  For me, the pain drastically reduces when I reach the aerobic point in my routine.  My breathing deepens, my strength suddenly increases and my pain reduces.  I first learned to find the aerobic point when I went through physical therapy for a damaged shoulder and rotator cuff.

Approaching and crossing aerobic point

Magic of crossing the aerobic point

The therapists used computerized equipment that measured the movements and changes in my strength levels during the routines.  They would point out the moment when the computer registered the rise in my strength, and I could associate it as a point when I experienced a drop in pain.  The bursts of strength would occur several times during the therapy routines, and each time I would feel a little stronger and move more easily.

I sense a response similar to the physical therapy with gentle sustained exercise.  My first sense of the change is usually about 12 to 17 minutes into my cycling.  After that, I feel like going a little faster, and immediately feel a little more energetic.  I usually try to cycle long enough to reach that first point, and push beyond it a little.

Just do it!

Building up, slowly

If I am having a string of days or weeks of quieter lupus, I can build up to about 30 minutes of exercise, never adding more than a minute each day.  Some days, if I am hurting a lot, I slowly cycle for only about 5 – 10 minutes, never pushing speed to a point where pain rises.  Even moving very slowly helps a little!  I cannot remember a time when I didn’t feel at least slightly better after exercise than I did before it.

Try it.  Really!

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