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.