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Nerve Pain and Numbness

Peripheral neuropathy is a type of nerve damage that causes changes to sensation in the toes, feet and legs, and sometimes in the hands and arms. It can be caused by HIV itself, some antiretrovirals and other medications, by common nutrient deficiencies and medical conditions such as diabetes and hypothyroidism. Peripheral neuropathy is much less common thanks to newer antiretroviral drugs. However, it still affects some people who have been living with HIV for a long time. It can become permanent, so it’s best to deal with it early.

Figuring out the cause

Peripheral neuropathy can cause numbness, tingling, burning and sometimes severe pain. It most often occurs in the toes, feet and lower legs, but can also occur in the hands and arms. Normally, both sides of the body are affected. It is important to identify the cause so that it can be addressed, and your healthcare provider may order some tests.

If your nerve symptoms appear to be caused by a medication, it should be stopped as soon as possible. Delay could result in permanent problems. When medications causing the problem are stopped shortly after symptoms begin, pain and numbness usually subside over time. Too many people have ended up with permanent pain, numbness and burning because the symptoms of peripheral neuropathy weren’t identified soon enough, or because they continued too long on the medication after the pain started.

Antiretroviral drugs and other causes 

The antiretroviral drugs that were once the most frequent cause of neuropathy — d4T (Zerit), ddC (Hivid), and ddI (Videx EC) — are no longer in common use in Canada. Much less commonly, neuropathy can be caused by 3TC (lamivudine, and in Combivir, Delstrigo, Dovato, Kivexa,  Trizivir and in generic formulations) and T-20 (enfuvirtide, Fuzeon). Many other drugs can also cause this condition. If you begin to develop symptoms of peripheral neuropathy, it is important to discuss them with your healthcare provider and pharmacist, in case a medication is contributing to the problem.

There are other factors that can also cause or contribute to peripheral neuropathy. These include diabetes, hypothyroidism, alcohol, cocaine or amphetamine, and vitamin B12 deficiency, as well as HIV itself.

Nutrient supplements 

Nutrient supplements that may be useful in preventing or reversing peripheral neuropathy include:

  • alpha-lipoic acid (in doses of 300 mg, one to two times per day; preferably using an extended-release form)
  • gamma-linolenic acid (in doses of 240 mg, twice daily)
  • acetyl-L-carnitine (in doses of 500 mg, three times daily with meals).

Antiretroviral drugs, particularly the older nucleoside analogues (nukes) listed above, can damage mitochondria, the power plants of cells. This is thought to contribute to neuropathy and other health problems. Fortunately, the newer nukes do not appear to cause the extent of mitochondrial damage seen with the older drugs.

Because of the link between mitochondrial damage and neuropathy, some people try to prevent or reverse mitochondrial damage by taking a combination of antioxidants, B vitamins and the amino acid acetyl-L- carnitine. To get this combination of nutrients, try:

  • a potent multivitamin that includes the whole B vitamin complex and a broad spectrum of antioxidants (vitamin C, carotenoids, selenium and others)
  • a supplement of acetyl-L-carnitine (500 mg, three times daily with meals)

When B complex levels are too low, some people find it helpful to supplement, especially with vitamin B6 (25 to 50 mg daily taken as part of a B complex supplement) and vitamin B12. Taking very large amounts of vitamin B6 has been linked to nerve problems. The recommended maximum daily dose is 100 mg, though vitamin B12 is generally safe, even at high doses.

Some people also take magnesium, a mineral essential for nerve function. The recommended maximum daily dose for magnesium is 350 mg daily, though doses of 500 to 600 mg per day may be needed by some people to see benefit. Doses above 350 mg of magnesium daily can cause diarrhea. Magnesium glycinate may be better tolerated than other forms. Always talk to your pharmacist about which forms of magnesium are safe for you to take with your medicines.

Vitamin D3 may also be helpful. Multiple studies have shown that vitamin D deficiency is common in people living with HIV. The pain of peripheral neuropathy may be reduced with supplementation with vitamin D3.

Reducing pressure on feet or hands 

Anything that soothes and reduces pressure on hypersensitive feet or hands can help to reduce pain caused by peripheral neuropathy. This includes:

  • limiting the amount of walking
  • avoiding wearing tight-fitting shoes and socks
  • avoiding standing for lengthy periods
  • avoiding repetitive pressure on the hands
  • soaking your feet or hands in ice water regularly
  • raising your heels or hands off the mattress with a small pillow to help prevent increased pain while sleeping
  • keeping heavy sheets and covers off painful areas
  • exercising regularly
  • getting acupuncture or acupressure

If you are experiencing numbness or lack of sensation in your feet, it’s a good idea to get in the habit of checking your feet every day when you remove your shoes and socks. Sometimes neuropathy prevents you from feeling cracks and sores on your feet. A visual inspection can help you identify problems early and prevent them from getting worse.

Drug and alternative therapies

Although they have mostly been studied for diabetic neuropathy, some medications and treatments can help reduce the pain of peripheral neuropathy, although they won’t eliminate numbness. These medications include:

  • Antidepressants such as amitriptyline (Elavil) and nortriptyline (Aventyl) may be useful. Side effects can include drowsiness, dry mouth, constipation, lack of urination and low blood pressure upon suddenly sitting up or standing. Nortriptyline tends to cause less drowsiness than amitriptyline and can be useful for daytime pain management, while amitriptyline can be helpful for pain that is worse at night. Duloxetine (Cymbalta) is a different antidepressant sometimes used for nerve pain; it can cause nausea and sleep disturbances initially as well.
  • Antiseizure medications such as gabapentin (Neurontin) and pregabalin (Lyrica) can also be useful for nerve pain. These medications can cause drowsiness, dizziness and weight gain in some people. Other antiseizure medications, such as carbamazepine (Tegretol) and phenytoin (Dilantin), are often used to treat nerve pain, but these have significant interactions with antiretroviral drugs, including non-nukes and protease inhibitors, and should not be taken if you are using these medications. All of these medications are usually started at a low dose and increased gradually to minimize side effects, especially sedation and dizziness. Pain relief is not immediate with these medications, and it can take as long as six to eight weeks before the full benefit of antidepressant or antiseizure medications is felt. Try to continue for as long as you can.
  • Anti-inflammatory drugs such as ibuprofen (Advil, Motrin) may help with mild neuropathic symptoms. Opioid pain killers can be used to help manage more severe pain that doesn’t respond to other medications. However, caution is needed because of the potential for dependency and the risk of poisoning.
  • Capsaicin, derived from chili peppers, can help reduce neuropathic pain when applied as a cream or patch directly over the painful areas. Capsaicin cream will only result in a temporary reduction in pain, so it must be used regularly to provide longer lasting pain relief. Some people feel significant burning sensations on the skin when the cream is applied, so not everyone can tolerate it.
  • Marijuana (cannabis) and its synthetic version, nabilone (Cesamet), are sometimes helpful for treating pain related to neuropathy. 
  • Geranium essential oil has been reported by some people to help when it is, diluted in a carrier oil (such as coconut or sweet almond oil) and rubbed onto the painful area.