One Patient's Positive Perspectives

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!


Comments on: "Lupus neuropathy in the night watches" (6)

  1. butudontlooksick said:

    I’ve had some luck with cymbalta, but it is mainly to take the edge off and GREAT as an’ll have to pry it from my hands…. Tried lyrica, yuk, neurontin, stopped working, elavil, snooze. Am on tegretol for myoclonic seizures which also helps somewhat for the neuropathy as well. IMO there’s no good medication for it anyway except pain meds. I’m sorry your experiencing it as well. HUGS!

  2. I often have restless legs, I wonder now if it may be what you’re describing. It is very hard to put into words what it feels like. Almost like an internal itch that can’t be relieved and the pain in my legs normally feels like electrical currents. Thankfully it isn’t often that I experience this in its most extreme form. I’ve found it happens more often when I am overtired and haven’t had sufficient rest. The worst I’ve ever experienced it has been during some extended hospital stays and it was almost unbearable. Hmmm…another puzzle? 😊 Lupus prevents boredom! lol

    • Hi L.A.!
      I certainly know your pain from lupus neuropathy. I started out with regular peripheral neuropathy in extremeties over 20yrs ago which progressed (morphed) into a bodywide nerve compressiohn syndrome. I now have bilateral carpal, tarpal and ulnar with left side radial and paereanal. So you never know.

      Also I have multiple cranial neuropathies including trigeminal neuralgia and and occipital neuralgia. Even now, my neurologist and rheumatologist are slow to say that my nerve damage is from systemic lupus! I am on 1500mg daily Cellcept for better control of my SLE symptoms. It has been very beneficial.

      I read that the statistics of lupus patients with peripheral neuropathy are approximately 20%. Of those 20% only 5% will have cranial neuropathies. I have found this information to be right! I have met about two dozen of us tops with lupus patients. I keep a list and website to share any new information I find with all of us to stay updated here: where I explore the cause and effects of nerve damage and autoimmune conditions.

      Neuropathy is difficult to manage, TN or trigeminal neuralgia is known as the most painful condition known to man. I welcome any new info on how to live better with it! 🙂 Attitude is everything! Love and HUGS, Julie

  3. That must be a horrible feeling to awaken from a sound sleep and to awaken in so much pain. I’m thinking of you, adventurer, and hoping that tonight is a good night. Gabapentin. Elavil, Dilatin?

    • Annie, Thanks for your comments and thoughts. I spent the last few days in Tucson, AZ at a professional conference and did pretty well without too many problems while away from home. I have thought about asking for something more to help with the neuropathy, but I hate the idea of adding any more meds! LA

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