Neuropathy- a Symptom of HIV

Today's post is an extract from a survey of 265 HIV-patients in March, 2011, carried out by NAT which is a UK charity dedicated to transforming society’s response to HIV (see link below). The extract refers to neuropathy amongst HIV+ers and while the survey group could hardly be called 'large' and the responses are somewhat predictable, they are recognisable. This section on neuropathy will not be news to most readers but the survey as a whole makes interesting reading and it may be worth while following the link below to the survey in full.

Fluctuating Symptoms of HIV
August 2011

Neuropathy

Neuropathy (nerve pain) was a common side-effect from some of the early HIV drugs. It can also be caused by HIV itself.

"Nerve pain can be a bummer, it creeps up sometimes when you least expect it - how can you sit in the cinema or theatre and enjoy a performance and at the same time stifle the scream when a red hot poker is stuck in your lower limbs?"

It was the least commonly reported symptom in our survey, but can have a dramatic impact on quality of life. The experience of neuropathy ranges from numbness or tingling to severe pain in the hands and feet (in particular).
In NAT’s survey, 23% of respondents with fluctuating neuropathy said that it was caused by their HIV, compared to 21% that attributed it to treatment and 30% to a combination of both.

"Peripheral neuropathy means that my feet are always sore - they can
get very painful at night (enough to keep me awake); or after standing/walking for more than say 15 minutes. Nothing seems to help."

This group was also most likely to say that they experienced another symptom on a constant basis - for example, 38% reported constant fatigue and 39% constant depression or anxiety.

"As a result of the neuropathy I experience permanent numbness as well as burning sensations, cramps in my feet lasting for hours, acute unpredictable stabbing pains in the soles of my feet and shooting pain up my legs. This is not predictable but affects my ability to do a range of personal care tasks and activity including household chores and paid employment. The other annoying thing about the neuropathy is that it comes and goes in severity, no warning and never predictable."

One in five said they could never predict when neuropathy was going to affect them. There were two main dimensions of fluctuation reported: whether neuropathy was at all present; and when present, the severity of the discomfort experienced.
A third of respondents with fluctuating neuropathy said that they were affected for a minimum of a week in any one episode.

http://www.nat.org.uk/media/Files/Policy/2011/September-2011-Report_Fluctuating_symptoms_of_HIV.pdf