One Patient's Positive Perspectives

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.


Comments on: "Living with Lupus: Fact #21 – Nervous system involvement" (7)

  1. colemom4 said:

    I’m angry right now. I have diagnosed Lupus but with almost all the symptoms above I am accused of ‘issues’ I’ve gone 18 months heAlthy and in the last 10 days had eye issues neuro ophthalmologist says 100’s of corneal scratches, reasons unknown, can’t sleep, slurred speech and my husbands verbal attack. Because he’s sure I’m doing it on purpose

  2. Diane marks said:

    Can brain fog from lupus make you fell like not yourself I fell like I have no felling for nothing I have lupus slp

    • Yes, lupus brain fog can may you feel like it is hard to think clearly and feel “off” and not mentally sharp. Thanks for your visit to Lupus Adventures. LA

  3. Tracey Glasse said:

    I think my undiagnoised medical condition is Lupus. If I didn’t know better I would have thought this article had been written about me… I don’t have MS and I don’t have Myasthina gravis as I have been tested. thank you this has helped tremendously.

  4. […] 6. Living with Lupus: Fact #21 – Nervous system involvement – May 21, 2012 – 1,139 views […]

  5. […] lupus fog, memory problems or word retrieval problems etc. due to lupus, I highly recommend you read this article.  Be encouraged, you are not alone.  If you need someone to understand your dilemma,  I highly […]

  6. wwfd301 said:

    Thank you for this! I linked this post on my Facebook Status! Your timing is perfect! My friends and colleagues think I am blowing them or things off when I really just forget so much!

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