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Peripheral Neuropathy and HIV/AIDS

April 10, 2015

Peripheral Neuropathy and HIV/AIDS

Table of Contents

What Is Peripheral Neuropathy?

Many people living with HIV (HIV+) 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 spinal cord (central nervous system) and the peripheral nerves (peripheral nervous system). The peripheral nerves run throughout the body like webbing, connecting all the parts of the body to the brain and spinal cord. Any disorder or problem involving damage to the peripheral nerves is called peripheral neuropathy or PN.

The most common peripheral neuropathy is called distal symmetric polyneuropathy (DSP), which affects over 20 million Americans. This is what most HIV+ people are talking about when they say they have neuropathy. Most health care providers 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, and/or drugs that are toxic to the nervous system (neurotoxic drugs), or a combination of both may cause damage to the peripheral nerves.

PN happens when the nerves between the feet and/or hands and the spinal cord become damaged. Like frayed wires that can spark or misfire, these damaged nerves do not send their electrical signals properly. As a result, PN can cause feelings of numbness, tingling, burning, itching, or shooting pain. Some people with PN describe their pain as "holding a lit match to my feet," or "walking on broken glass." This chronic (long-lasting) pain can lead those who suffer to become isolated and depressed.

Who Is at Risk of Developing PN?

There are certain risk factors for PN:

Neurotoxic drugs include many that are have been used more commonly in the past to treat HIV or HIV-related conditions. The most familiar are the HIV drugs commonly called the "d-drugs." These d-drugs are rarely used anymore because they are so often toxic to the nervous system:

Other neurotoxic drugs include:

How Do You Know if You Have PN?

Signs of PN include:

It may be easy for you or your health care provider to overlook slight or occasional sensations like the ones listed above. Do not ignore these symptoms, as they may get worse. If you have any of these symptoms, talk to your health care provider right away so that you can receive early diagnosis and treatment.

Your health care provider will examine you and ask questions about your symptoms, medications and supplements, work environment, exposure to toxins, history of alcohol use, and family history of neurological disease. Usually, PN is diagnosed based on signs and symptoms you report. However, your health care provider may also order tests to determine the type and extent of nerve damage. Blood tests to rule out other potential causes of PN are most common.

If your symptoms are unusual, your provider may refer you to a neurologist, who may suggest nerve conduction velocity (NCV) testing or an electromyogram (EMG) test for further evaluation. NCV looks at the speed of the signals your nerves send, and EMG looks at whether your muscle can respond normally to an electrical signal from a nerve. Other types of sensory testing and skin biopsies are generally used in research.

PN Treatments

Unfortunately, there are no approved medical treatments to cure PN. For now, the key to treating PN is to remove the cause and control the pain. If HIV drugs are the cause of the PN pain and those drugs are stopped when symptoms of PN are first noticed, the pain most often goes way. However, this may take up to eight weeks since nerves are slow to heal.

Removing the Cause

It is important to take your HIV drugs on schedule and as prescribed so that your viral load stays low and your CD4 count remains high. This way, you can minimize HIV's effect on your nervous system.

If you are on a d-drug, talk to your health care provider about stopping or switching the drug. If you decide to stop or switch 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

Controlling the pain can require a combination of drugs and other therapies. Remember to discuss any medications, supplements, or therapies you are currently using with your health care provider.


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, or trying new drugs, therapies, or tools

Medical Team -- Choose health care providers who are knowledgeable about HIV and neurological problems, and who listen to you and answer your questions

Support -- Finding support is critical. Peer organizations or local HIV support groups can offset the sense of helplessness and isolation felt by many people who experience chronic pain. Talking with peers can give you an opportunity to share your frustrations and successes with those who understand what you are going through. Come visit The Well Project's blog, A Girl Like Me -- an online community of women living with HIV and the heart of our community -- or get connected to one of our groups.

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General Disclaimer: is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, consult your health care provider.