CNS Lupus and Emotions
Image From Bundesarchiv
I have already devoted some space on this website to the emotional aspects of lupus. A lupus patient must deal not only with the stress of having a chronic and potentially life-threatening illness, but also must acknowledge the possibility that emotional disruptions can be due to CNS (Central Nervous System) inflammation. Estimates of the number of people who experience this manifestation of lupus vary–on the more modest side, it has been estimated that some 28% of SLE patients experience CNS involvement. On the higher end, it has been estimated as many as 80% of people diagnosed with SLE will experience some kind of CNS symptom.
The disparity between these two estimates–28% and 80%–is due partly to the way CNS involvement is defined. In the strictest interpretation this would imply only the most severe symptoms: seizure, stroke and psychosis, for example. In a more inclusive definition, and also one more commonly used by researchers and doctors, symptoms would include cognitive impairments (lupus fog, for example) and psychiatric disorders (besides a frank psychosis).
In 1999, The American College of Rheumatology issued criteria for assessing neuropsychiatric lupus; these included some hard to quantify symptoms, such as mood disorder, acute confusional state, anxiety disorder and cognitive disfunction. In 2003 a quality of life study conducted in the Netherlands found that the three most common and burdensome manifestations reported by SLE patients were “fatigue, muskoskeletal complaints and mental symptoms”. Disagreement about the percent of people who experience CNS inflammation is likely due to the fact that the specific nature of “mental symptoms”, in many cases, defies objective verification.
It is important to remember that the psychiatric manifestations of lupus often are not of the kind that respond to classical mental health interventions, such as talk therapy. Talk therapy is helpful in addressing stress and in designing lifestyle choices, but if there is CNS inflammation underlying an emotional disturbance, then the most important thing to do is to treat the inflammation. The 1999 ACR criteria for diagnosing neuropsychiatric lupus included:
Aseptic meningitis, demyelinating syndrome, headache, movement disorder, myelopathy, seizure disorders, acute confusional state, anxiety disorder, cognitive dysfunction, mood disorder, psychosis, acute inflammatory demyelinating polyradiculoneuropathy (Guillain-Barre´ syndrome), mononeuropathy, myasthenia gravis, neuropathy (cranial), plexopathy, polyneuropathy
(Source: Arthritis and Rheumatixm Vol. 42, No. 4, April 1999, pp 599–608 American College of Rheumatology)
I will revisit in future blogs the connection between CNS inflammation and mental health. I have noticed, as I peruse various lupus blogs, that patients tend to blame themselves for not being able to cope with depression, irritation and other emotional issues. I think, if there were more awareness of the direct influence that inflammation has on the nervous system, patients might blame themselves less for emotional disruptions and instead ask their physicians to address this very real and treatable manifestation of systemic lupus.
As in every case, a discussion about how to treat lupus, in whatever shape it takes, is one a patients should have with their doctors.