by Mary Catherine George
July 2003
What is Peripheral Neuropathy?
Approximately 60 percent of HIV+ people will
develop problems that involve the nervous system. The nervous system
controls thinking, movement, sensations, and feelings.
There are two parts of the nervous system:
the brain and the spine (central nervous system) and the peripheral nerves
(peripheral nervous system). The peripheral nerves run through the body like
webbing, connecting all the parts of the body to the brain and the spine.
Any disorder involving the peripheral nervous system is called peripheral
neuropathy or PN.
The most common peripheral neuropathy is
called distal symmetric polyneuropathy (DSPN). This is what most HIV+ people
are talking about when they say they have neuropathy. Most doctors know it
as a sock and glove nerve problem, because the areas most affected are where
you wear your socks and gloves.
What causes PN?
The causes of PN are still
unknown. Researchers suspect that either HIV, or drugs that are toxic to the
nervous system (neurotoxic drugs), or a combination of both may cause the
damage to the peripheral nerves.
PN happens when the communication between the
nerves in the feet and/or hands to the brain and spinal cord become damaged.
Like frayed wires that can spark or misfire, PN becomes a painful, numb,
burning, shooting sensation that many sufferers describe as holding a lit
match to my feet, or walking on broken glass. This chronic pain can lead
those who suffer to become isolated, depressed, and even suicidal.
Who is at risk of developing PN?
There are certain risk factors for PN:
Low CD4 cell counts
Older age (greater than 50)
Medical conditions (for example, diabetes)
Alcoholism
Neurotoxic drugs
Vitamin B12 deficiency (rarely)
Neurotoxic drugs include many that are used
to treat HIV or HIV-related conditions. The most familiar are the HIV drugs
commonly called the d-drugs:
d4T (Zerit)
ddC (Hivid)
ddI (Videx)
Other neurotoxic drugs include:
INH (isonizaid)
Myambutol (ethambutol)
Flagyl (metronidazole)
Hydoxyurea
How do you know if you have PN?
Early signs of PN include:
Tingling
Pins and needles
Numbness
Feet feeling like they are asleep
Stumbling when you walk
Feet throbbing or cramping at night
Sudden sharp shooting pains
It is these slight or occasional sensations
that are often overlooked by both the patient and the doctor. Do not ignore
these symptoms or they may get worse. In some cases the pain in the feet
becomes so bad that it is difficult to walk or even sleep. If you have any
of these symptoms, talk to your doctor right away so that you can receive
early diagnosis and treatment.
PN Treatments
Unfortunately, there are no approved medical
treatments to cure PN. For now, the key to treating PN is to remove the
cause or control the pain.
Finding what works can be a process of making
different choices. If you are on a d-drug, lowering the dose or stopping the
drug should be discussed thoroughly with your doctor. If you decide to stop
or reduce a drug, it may take six to eight weeks for the PN symptoms to
decrease. If the symptoms continue, the PN could be due to HIV.
Relieving the pain can require a combination
of drugs and other non-medical therapies. Using Tylenol or Advil for mild
symptoms of PN may help. If the pain continues, your doctor may prescribe
opioid-based narcotics (Tylenol with codeine) plus additional drugs such as
antidepressants (Elavil), or anticonvulsants (Tegretol, Dilantin, Neurontin,
Lamictal). If the pain increases and becomes severe, stronger narcotics may
be considered.
Other treatments can include:
Topical lidocaine patch called Lidoderm
Acupuncture, massage, yoga, hypnosis, and
meditation
A visit to the podiatrist to discuss how to
care for your feet and what shoes or socks you should wear
Over-the-counter-creams, soaking your feet,
or simple, easy exercises or stretches
Certain supplements have been used to treat
PN including alpha-lipoic acid (thiotic acid), acetyl-carnitine, and evening
primrose oil containing gamma linolenic acid. Caution should be taken when
considering these supplements. Their effectiveness has not been proven in
large studies, although some very small studies have reported benefit in
pain relief. They can also be costly and vary in quality between
manufacturers. Discuss supplements with your doctor before taking.
Fortunately, there is encouraging news about
new drugs in development. Research is underway for several PN treatments
that may bring relief to those who suffer from chronic pain.
Finding Support
Finding support and help is critical. Peer
organizations or local HIV support groups can offset the sense of
helplessness many people who suffer chronic pain feel. Also, seeing a
neurologist early for a diagnosis and targeted medications can help maintain
a pain level that is manageable.
AIMS for PN
The easy way to remember the keys to early
diagnosis, treatment and management of PN is to think AIMS:
Awareness Take the time to notice
what your body feels like and how you move.
Information - Never stop asking
questions, reading, trying new drugs, therapies, or tools.
Medical Team Choose physicians who
are knowledgeable about HIV and neurological problems and listen to you and
answer your questions.
Support Talk about your feelings and
the pain. Find a support group for PN. This will allow you to talk to people
who understand what you are going through and can share your frustrations
and applaud your successes.
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