Living with Arachnoiditis

Christine Hopkins, a New Zealand nurse, wrote a thesis in 1998 on "The Presenting symptoms associated with arachnoiditis and the experience of living with them in everyday life". In this study, she interviewed in considerable depth, 11 participants, 1 of whom had no pain. The others experienced pain in various sites, burning, numb and cold areas, stabbing; flares of pain; constant; sore bones; ?ice burn', deep; cramping; intensifies with activity. ?not like any other sort of pain'. ?a freezing cold burn'. They also had headaches: linked to myelograms and epidural steroid injections. In addition to their severe physical pain and impairment, the interviewees described the emotional aspects of living with this incurable illness. "The study findings also indicate the complexity of the situations in which those with arachnoiditis find themselves." The participants' perceptions of their level of function reflected "a high level of disability linked largely to pain, as an immobilising factor in their lives." Hopkins also remarked on social isolation as a "marked feature of participants' lives".