One Patient's Positive Perspectives

Posts tagged ‘neuropathy’

Lupus and tea at quarter past three

Question Mark Key on Computer Keyboard

Lupus and tea at quarter past three

Hugged by a bubble of dim computer light, the keyboard and tablet cast a faint glow over the blankets. While sleep eludes, night thoughts invade the quiet darkness.  He slumbers beside as his slow baritone rumbling comfortingly quivers throughout the room.  Sleepless nights seem merciless when rest seems needed most!  Lingering weariness from a busy day and goosebumps from a cool winter chill disrupt efforts to relax.  Drawing the soft comforter up is warming and eases the chill, but still fails to bring on sleep.

A recent bout of insomnia has made ordinarily foggy lupus mornings more difficult.  Perhaps there are multiple culprits to sleep deprivation.  After spending the last couple of years in college, writing research papers well into the night has destroyed circadian rhythms and perhaps deregulated sensitive endocrine balances.  To reach the arduous goal of earning a late-life college degree, unfortunately, sleep became secondary to prescribed bed times, and school work took precedence.  Life has not yet fully adjusted to new patterns after recently finishing college.  Graduation just before the holidays blended into the normal seasonal stress and distractions.

Only 10 days left until Christmas!

After graduation, there were ten days until Christmas, so the few remaining nights were feverishly used for shopping, wrapping, decorating, and cooking.  There has still been no post-graduation let down.  Immediately after New Years, we moved our bedroom furniture into our home office, and began the reconstruction project in the master bedroom suite.  Dust, noise, contractors, and morphing levels and states of household chaos have permeated all the other rooms in the house.  This has affected any sense of normalcy, and perhaps sets life on just enough edge to rob me of rest in the night.

Surging peripheral neuropathy pain

A surge in nightly onset of peripheral neuropathy pain in legs and feet has contributed negatively to attempted sleep outcomes.  Recently careful timing of nighttime Gabapentin to equalize between twice daily doses is helping reduce the frequency and severity of nightly symptoms.  When the thirteenth or fourteenth hour arrives after morning doses, it is more likely that neuropathy symptoms will set in.  If medications wait until after the onset, it takes over an hour after a new dose to get any relief, and often pain medications are required to quiet the pain enough to allow sleep.  Overall exhaustion increases the likelihood of the this sleep enemy, so this might be a cause, too.

Eliminating trough effect

Eliminating steroid trough effect

Perhaps the split dosing of prednisone between morning an evening might also contribute some to the problem.  A few months ago, quite by accident, we discovered that adjusting daily prednisone doses from single morning 7 milligrams to split dosing of four milligrams at nights and three in the morning immensely improved morning mental clarity.  The Rheumatologist described the positive result as a reduction in “trough effect”, or more simply put, a lack of prednisone dropping to very low blood levels in the night.  A potential drawback impacting sleep may be increased nighttime steroid levels.  Even so, because the net morning result is so much better than it was with single dosing, despite any negative influences in reduced nightly REM sleep, split prednisone dosing was still well worth the risk of any lost rest.

Split dosing steroids not for everyone!

Finally, this spilt dosing is not good for everyone, and in fact, is usually medically discouraged for good reason!  While ordinary medical wisdom recommends full daily steroid doses are best given in the morning to better replicate normal endocrine activity, this was not a concern in my situation.  Since we no longer have any realistic hope that my normal cortisol production will ever resume, after years of failed trials to do it, normal precautions that protect future steroid production were meaningless.  However, in patients that still have some normal cortisol production, morning dosing is recommended to reduce potential suppression of adrenal production of natural cortisol.  But, for those who are completely steroid dependent, the medical wisdom notably shifts to equalizing blood levels throughout the day.  So, split dosing in this case makes perfect sense.


Wrapped in the promise of dreams

This quickly aging new year is a fleeting annual opportunity for new beginnings.  So, speaking like a seasoned procrastinator who waits until tomorrow to start getting more sleep, here I sit in the night lamenting my loss of it.  I am determined to start earnestly seeking this elusive commodity of sleep.  So, after reaching the bottom of a third cup of decaf tea, my thoughts of sleeplessness finally give way to sagging eyelids.  Slipping the computer onto the bed table and sinking under the warm blankets, darkness finally wraps around me with the promise of dreams.


Lupus adventures of a rain-washed garden morning

Gentle rain fell in the night

Gentle rain fell all night

Outside gentle rain fell steadily all night long, playing its soft mumbling music as lupus neuropathy and sleeplessness led to a first cup of decaf tea. Soon, the cup was cool and empty, and in the dark chill of night, it’s comfort and warming gone.

More cups followed in a cycle of comfort and cooling until the counting was lost and the morning was nearing. Sitting alone on the counter, a white saucer held a half-dozen soggy tea bags and a single spoon.  Then, exhaustion overwhelmed and sleep was at last possible.  Many long days filled with many concerns had also weighed heavily on a mind much too troubled with the cares of life.  Added to lupus and it’s challenges, stress and auto-immunity had taken their toll.  But, at last, there was sleep.


Soaked grass glistened

A few short hours later, morning came especially hard.  But the outside called, and the yard was unusually fresh and scrubbed by the evening’s showers.  Soaked ground glistened, and the moist lawn was saturated.  The air was crisp, moist and fresh, and filled with aroma of damp leaves and soil.  A chorus of giddy birds filled the cool morning air with vibrant chatter, as their song rose in the peaceful freshness of the morning.

It seemed that for a few moments, time stopped for me to briefly to experience the pleasure of a perfect, peace-filled instant. Gently slipping into the porch swing, leaning back and inhaling deeply, my eye lids closed so all my senses could taste and drink in the delightful morning.  If ever there was true simple bliss in this humble mortal world, it can surely be in simple joy of a perfect restful pause such as this!


Mighty, caring Creator!

Soon rejuvenated beyond the fruits of my shortened slumber, thoughts of prayer and gratitude formed in my heart and mind.  Such rich blessings placed all around me by the hand of a mighty, caring Creator, just waiting for me to notice and appreciate.

Did He envision the comfort and encouragement such an instance like this would bring?  In His infinite knowledge, mercy and love did He plan for even this single moment’s small blessing?  Who can know a weary heart’s simplest, and also deepest needs.

The God of my undeserved salvation surely does!  In His matchless mercy and kindness, it would seem He planned for providing even simple joys like this!  Prayers of words alone were absolutely inadequate, as in my grateful heart deep emotions mingled silently with unspoken thoughts of thanks.

Chilled air rushed deeply in with each breath, filling the deepest corners of my lungs with coolness.  It seemed within a few brief seconds weariness vanished, and a deep calming rest supplemented for lack of true sleep. Lupus not withstanding, my body felt strong and restored!

The day called

The day ahead called urgently

But then, the day ahead now called urgently, ringing its intrusive alarm to pull me toward resuming thoughts of responsibilities and care.  It promised to be busy and full of much to manage and do, but I was now ready for the schedule ahead.

Perhaps these moments are the reason we build porches, manufacture patio tables and chairs, and spend hours and small fortunes on landscaping and lawns.  We surround ourselves with these iconic items, hoping for snippets of time like this to enjoy ourselves in their midst.  For these precious glimpses of perfectness we plan and prepare.

Lupus and believing in mornings...

Chorus of generations of birds

Yet, it would have been too easy to slip right past this common opportunity, to forget to stop, sit a spell, or savor the beauty of finding this moment of perfect peace.  This is a nearly eternal moment.

Time has not seemed to move one second between stop off points, between the strung out lifelong series of moments like this.  They all seem somehow connected, and that perhaps generations of birds have seamlessly continued the same choral masterpiece, falling long ago upon ears of a seven year-old girl — and who now sits on my porch as a grandma!


Fluttering from dandelion to dandelion

Moments like these are when all seems right with the world, and the soul of a little girl returns to my heart.  Decades — no, half a century — has passed and it seems like that the same little girl who sat in the cool brisk dampness of her mother’s backyard, reveling in the birdsong, moist grass, flowers and earthy fragrance, is here, now.

No time has passed at all, and perhaps she is really the same little girl sitting on this back porch today, slowly sipping the delights of this morning’s fresh washed yard.

She closes her eyes and finds the same pure enjoyment of morning as did the little girl of yesterday who sat wiggling her bare toes in the soothing wet grass of her mother’s breezy back yard, patiently watching a Monarch flutter and float from one dew-kissed dandelion to another.

Both girls closed their eyes and savored their precious gift of morning.

Lupus neuropathy in the night watches

neuropathy intrudes into sleep

The onset of lupus neuropathy is never welcome, and interrupts some important times of rest in lives of lupus patient it affects.  At a patient’s most weary moments, this short-circuiting nerve pain and irritation may flow in disconcerting waves through thighs, knees, calves and feet.  For me, neuropathy sometimes comes on suddenly in the night watch, in the wee hours of the morning between midnight and four in the morning, intruding into what would otherwise be a restful, much-needed night’s sleep.

Neuropathy that wakes me is usually too intense and pervasive to ignore, it must be confronted.  Sometimes, when it strikes before bed time, I am able to rush to bed and fall asleep ahead of its full onslaught.  Other times, after sleeping a while restfully, it intrudes into my sleep like a robber who suddenly wakes the house.

waking realization of pain

My first waking realization is the pain in my legs and feet, and the gnawing persistence with which it wakes me.  I don’t want to wake up, I want to keep sleeping!  But, once neuropathy begins during my sleep, there is no escaping it without interaction of some type.  Along with intense restless pain in my legs, an inner ache and distress grips my weary malaise-filled torso.  There is no position of comfort to be found, no direction to toss or turn that will relieve the distressing sensations surging through me in miserable waves.  Sometimes the discomfort extends to the back of my neck and gives me a dull headache.

Tylenol, Ultram, Tea?

Getting out of bed is my only bearable option.  Moving, walking and getting my wakened body into motion seems to temporarily drown out the sensation in my legs, like turning up the volume on a stereo to drown out a yapping dog’s piercing bark.  I walk through the darkened house trying to think clearly enough to come up with an idea for relief.  Tylenol? Maybe that will be enough.  Ultram? Do I have enough hours to sleep for it to wear off before I have to get up?  Hot tea with milk and honey? Maybe increasing my  L-tryptophans will put me to sleep naturally.  However, sometimes I try those things and go back to bed, only to lay in the dark for another hour still feeling miserable and waiting for relief that doesn’t arrive.

hymns in the quiet darkness

On the worst neuropathy night watches, sometimes I wander out to the living room in my bare feet and pajamas, and spend a half hour doing yoga exercises dark to the rhythm of my husband’s snoring from the other end of the house.  Sometimes, I am able to sit comfortably enough to read my bible or a book, but other times, it is necessary to redouble my efforts to distract myself and drown out the neuropathy “noise.”  On the very worst nights, I give up trying go back to sleep.  I sit down at my grand piano in the dark and turn on the piano lamp behind the piano’s lyre, open a hymnal and start playing.

There, in the gently lit corner of my slumbering house, I quietly play hymns into the early hours of the morning and turn my heart to heaven.  If I cannot stop the neuropathy, and I cannot sleep, I resolve not waste precious hours in bed awake and miserable.  Instead, if sleep becomes impossible, I would rather sit in the dark playing music to honor and commune with my Almighty, merciful and comforting God.  This way, misery is forced to yield to the joy of fellowship with God in my quiet refuge of peaceful musical worship.

verses on these thoughts

A few verses from the Bible touching these thoughts:

Lamentations 2:19  Arise, cry out in the night: in the beginning of the watches pour out thine heart like water before the face of the Lord.

Psalm 63:6 When I remember thee upon my bed, and meditate on thee in the night watches.

Psalm 104:33  I will sing unto the LORD as long as I live: I will sing praise to my God while I have my being.

Psalm 107:28,31  Then they cry unto the LORD in their trouble, and he bringeth them out of their distresses. Oh that men would praise the LORD for his goodness, and for his wonderful works to the children of men!

Living with Lupus: Fact #21 – Nervous system involvement

Living with Lupus:  More than 80 percent of people with systemic lupus will experience some type of nervous system complication. Nervous system issues in lupus range from mild confusion or memory loss to strokes, seizures, and vision problems.

Lupus brain fog

Lupus brain fog

Most lupus patients experience a general mental clouding that is often dubbed “brain fog” like that experienced by other people auto-immune illnesses like fibromyalgia and multiple sclerosis.  This is not necessarily due to Central Nervous System lupus, but is more a byproduct of the metabolic processes related to cellular apoptosis, or cell death.

In non-medical terms, the best that I understand this process is that a normal amount of cell death happens all the time, and then our body makes new cells all the time to replace the ones that grow old and die.  The dead cells are made up of molecules, proteins, genetic material and other biologic building blocks that become the body’s trash to throw out when a the cells die.  In other words, the pieces of broken dead cells become garbage in our body, or what is called “cellular debris.”

As our body works hard all night to sweep up the aftermath of cell death that happens while we sleep, the higher than normal rate of cell death in lupus creates a huge load on our body’s sanitation system, and the garbage gets piled up in our body.  One of the places that is noticeably affected by too much cellular debris is the brain, and it clogs up the normal processes and makes it harder to think clearly.  As a result, many people with lupus experience mental clouding, or “brain fog,” especially in the morning when other lupus symptoms such as arthritis are also most pronounced.

Morning fog lifts as the day goes on…

During a visit a few years ago to Anchorage, Alaska to attend a LFA conference about lupus, I had an opportunity to visit with Robin Brey, M.D., a neurologist who worked at the University of Texas Health Science Center in San Antonio and was president of the LFA, South Central Texas Chapter and chat with her about nervous system involvement of lupus.  Doctor Brey was quoted in a 2005 Lupus Now issue, explaining that “cognitive dysfunction definitely is the most common symptom of CNS involvement that she sees.”

“The way I relate to the term ‘cognitive dysfunction’ is that it’s a problem of difficulty finding words and retrieving information,” Brey explains. “My patients say it feels like they have brain fog.”

CNS lupus involvement

CNS involvement

In addition to the milder brain fog, some lupus patients also have Central Nervous System (CNS) involvement of their lupus.  This is a more serious problem than brain fog, and if uncontrolled can result in damage to brain tissue and even in extreme cases death.  This, like any other attack organ damaging attack of lupus is important to treat quickly and appropriately to prevent possible damage to brain tissue or other disabling complications.

CNS symptoms

My own lupus challenges include CNS involvement.  CNS lupus is the major reason that my lupus medications eventually included stronger drugs such as prednisone, kenalog injections, methotrexate, azathiaprine, rituximab infusions and now belimumab infusions.  Each patient with this problem is carefully followed by their rheumatologist, and may also be treated for their CNS symptoms through referral to a neurologist.  The most severe cases of CNS involvement can also cause seizures, but I have never had this problem myself.

My CNS lupus symptoms usually indicating a flare include:

  • mental confusion
  • short-term memory problems
  • cognitive dysfunction and disruption
  • difficulty concentrating and solving problems
  • general sense of confusion, lack of direction
  • disorientation to space and getting lost trying to find familiar places
  • forgetting names of people I know very well
  • confusion about time, day, date and even month
  • problems with math calculation
  • difficulty with eye-hand coordination, vision and depth perception
  • slurred speech and difficulty articulating words while speaking
  • headaches
  • reversible depression

Most of my CNS lupus symptoms typically immediately responds to steroid treatments given by my doctor, either as an injection or a large burst in my daily prednisone dose, followed by a gradual tapering of the dose as the flare lets up.

Authoritative information about CNS lupus and other types of nervous system involvement of Lupus is found at the Lupus Foundation of America’s website.  Their article on the Nervous System  discusses various types of nervous system involvement, and highlights many important issues and symptoms associated with these possible complications of lupus.

Nerve cell

Peripheral and autonomic nervous system and lupus

Peripheral neuropathy with lupus can be caused by inflammation, compression, damage or swelling in tissue around nerves, resulting in vision problems, facial pain, ringing ears, dizziness, drooping eyelids, or carpel tunnel syndrome.  My lupus experiences include peripheral neuropathies in my legs, cranial nerves and even once neuropathy was diagnosed as the cause of severe pain in a tooth that almost made me get an unnecessary root canal.  Thanks to an astute endodontist who knew about lupus, he accurately diagnosed my problem and we treated my lupus, instead of pulling a tooth!  Neuropathy can cause burning, pain, numbness and temporary disruption of normal nerve functions.

Neuropathy nerve damage

Lupus can cause over activity in the autonomic nervous system (ANS,) disrupt normal regulation of automatic body functions and cause numbness, burning, tingling, mental confusion, headaches, and digestive problems.

Raynaud’s phenomenon happens when ANS lupus involvement causes inflammation in nerves or blood vessels, making vessels spasm and restricting blood flow, especially in repsonse to cold. Finger tips or toes turn red, white, or blue and may also hurt.

Headaches in lupus patients can be due to migraines, or can be caused by vasculitis from active lupus causing blood vessel inflammation. Lupus headaches that don’t respond to over-the-counter pain medications should be discussed with the patient’s doctor.

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