Peripheral Neuropathy

Peripheral neuropathy (PN) is a condition caused by damaged nerves. As the nerves become damaged, they misfire and send pain signals to the brain. Or, the nerves may fail to send signals, which causes numbness or loss of balance.^1,2

PN most often occurs in the feet and toes. It can also appear in the fingers and hands. Up to 6 in 10 people with HIV experience PN. It is a chronic (long-term) condition that can be quite painful.^1,2

What causes peripheral neuropathy?

Diabetes is the most common cause of PN in all people. In people with HIV, doctors believe PN is caused by a combination of:¹

• HIV itself
• Some of the drugs used to treat HIV
• Lack of certain vitamins

People with HIV are at higher risk of developing PN if they have:¹

• Low CD4 cell count or high viral load
• Other health conditions especially diabetes and alcohol use disorder
• Low levels of vitamin B12

Having HIV for longer and being over 50 years old are also linked to an increased risk of PN.¹

Older people who have HIV and those who have lived with it longer are more likely to have taken the earliest HIV drugs. Often called d-drugs, these medicines are rarely used anymore because they so often harm the nervous system. These drugs are:¹

• ddI (didanosine, Videx^®)
• d4T (stavudine, Zerit^®)
• ddC (zalcitabine, Hivid^®)

Other drugs can damage the nervous system and cause PN. These include some antibiotics as well as drugs used to treat heart disease, tuberculosis, and cancer. The more drugs you take that may harm the peripheral nerves, the more likely you may be to develop PN.^1,3

People with HIV who are vegan or have restrictive diets may have low B12 levels due to their diet. Vitamin B12 is only found in meats and dairy products.³

Symptoms of peripheral neuropathy

Some doctors call PN "sock and glove syndrome." That is because people with PN often report feeling less sensation in the fingers and toes like they are wearing socks or gloves. Other signs of PN include:^1,3

• Feelings of burning, tingling, itching, or pins and needles
• Feet or hands feeling asleep or numb
• Feet or hands cramping or throbbing at night
• Stumbling when walking
• Trouble gripping or holding onto things
• Sudden, sharp shooting pains

Symptoms are usually felt equally on both sides of the body. The intensity of these symptoms varies from person to person. If you feel any numbness, tingling, or pain in your hands and feet, talk to your doctor.³

Dizziness, diarrhea, and erectile dysfunction are less common symptoms of the nerve damage that may occur with HIV. There can be many causes of nerve damage. So your doctor will need to investigate what is causing your symptoms.³

Diagnosing peripheral neuropathy

Your doctor will begin by reviewing your medical history and conducting a physical exam. Be ready to share the symptoms you are feeling, how often, and how intensely, and if your symptoms affect your daily activities.^1,3

PN is usually diagnosed based on your symptoms. But your doctor may also order blood tests and nerve tests. Blood tests may help rule out causes other than HIV. Nerve tests, such as an electromyography (EMG) and nerve conduction study (NCS), can help track where and how much your nerves are damaged and can help find the cause of your nerve pain.^1,3

Treatments for peripheral neuropathy

There is no cure for PN from HIV. The good news is, your doctor may be able to help you track down the causes and control the pain. Treatments for underlying causes include:^1,3

• If you are taking an HIV medicine known to cause PN, you may be able to switch to another drug that is less toxic to the nerves.
• If your viral load is high and CD4 count is low, taking your HIV drugs as prescribed can reduce the damage HIV does to your body.
• If your tests show low levels of B12, your doctor may recommend B12 injections.

There are many ways to treat the pain of PN, such as:^1,3

• Antidepressant drugs, anti-seizure drugs, and prescription or over-the-counter pain relievers
• TENS (transcutaneous electrical nerve stimulation)
• Acupuncture, massage, yoga, hypnosis, biofeedback, and meditation
• Heat or cold (wearing warm socks or running cold water on your feet)
• Avoiding tight shoes and socks

Your regular doctor may recommend that you see a podiatrist if you have PN in your feet. A podiatrist is a doctor who specializes in problems of the feet. The podiatrist may give you tips on:¹

• How to care for your feet
• What shoes and socks to wear
• Lifestyle changes to help protect your feet