HIV, and older HIV meds, can cause a condition known as neuropathy (nerve damage). Peripheral neuropathy causes pain, tingling, and numbness in the feet and fingers.
Neuropathy can disrupt daily life, make it difficult to walk or sleep, and can lead to depression or anxiety. Neuropathy that affects the feet can lead to falls and injuries.
What you can do with your doctor
Ask your doctor if any of your meds can cause neuropathy. If so, you can ask your doctor if you can switch to another med.
If you have neuropathy from meds you took in the past, be aware that nerve damage heals very slowly. As a result, treatment takes time and patience. Set realistic goals with your doctor, such as:
Set goals about how much your pain should decrease, and by when. For example, a goal might be to lower your pain by 25% by next month. Ask your doctor about a realistic expectation given the kind of pain you have. If a new pain med doesn’t lessen your pain symptoms within a few weeks, ask your doctor about changing it. You should keep a pain diary to record what effect the med is having.
You should ask your doctor about how much function you can expect to regain with pain treatment. Examples of functional improvements might be sleeping without waking up from pain, returning to work, or climbing stairs without help.
You should ask your doctor if there are options for pain management other than taking meds. Some other ways to treat your pain that can help you avoid the side effects of pain meds could include creams, heat, cold, massage, or exercise.
What you can do yourself
You should take the right amount of pain meds at the right time of day as prescribed. To remind you when to take your meds, use a pillbox or set an alarm on your phone.
GET CONTROL OF YOUR PAIN
It is easier to prevent pain than to get rid of it once you have it. This may mean taking pain pills even when you have no pain. You should work with your doctor on a pill schedule that meshes with your daily life.
AVOID SIDE EFFECTS
Taking too many pain pills can cause sleepiness, problems breathing, overdose, and even death. You should never take more pain pills than what were prescribed.
WEAR THE RIGHT SHOES!
Most people who have peripheral neuropathy have pain in their feet. Finding shoes that minimize this pain is essential. You should find a shoe store that specializes in shoes for medical conditions. Neuropathy is common in people with diabetes, and there are shoe stores that cater to them.
Since any pressure on the toes can cause considerable pain for people with neuropathy, you should ask for shoes with a large “toe box”. This is the part of the shoe that surrounds the front of the foot – having it as large and wide as possible can make a big difference when it comes to foot pain. The shoes may not be as fashionable as you’d like, but your feet will feel much better.
Wear comfortable slippers at home and, if possible, at work. The right slippers can go a long way to easing foot pain.
But don’t wear slippers with smooth soles when walking on wood or tile, as that increases your risk of a fall. Take your shoes off as often as possible when no one will notice such as at your desk or at the movies.
TAKE BREAKS WHEN WALKING
You should learn how long you can walk without pain, and take a break after reaching that point, before the pain gets severe. After a break, and perhaps taking off your shoes, you should be able to walk farther.
GET ENOUGH SLEEP
Good sleep heals the body and can help reduce pain. It also puts you in a good mood, which helps you deal with pain better. If you have problems sleeping because of your pain, ask your doctor for help.
BE CAREFUL WHEN WALKING
Even though we’re unaware of it, our feet send large amounts of information to our brain to help us balance and make us aware of uneven surfaces when we walk. Neuropathy can significantly decrease the amount of information our nerves are sending, making walking riskier. You can avoid falls by being alert, walking carefully, and watching the surface ahead of you – especially sidewalks, which often have bumps and holes. Always hold, or at least touch, the handrail when using stairs.
Neuropathy (damage to the nerves) is referred to as “peripheral neuropathy” when it affects the hands and feet. Another more formal name is “distal sensory neuropathy”. This problem is frequent in older adults both without and with HIV. Symptoms of the condition appear slowly and consist of tingling, burning, numbness, and eventually pain, especially at night. In addition, the pain can be distracting and increase the risk of falls.
For older adults, HIV may affect the nerves of the feet over time. Also, in long-term survivors of HIV, peripheral neuropathy may have been caused by certain older HIV medications. There is some question as to whether protease inhibitors can cause neuropathy.
Diabetes can also cause peripheral neuropathy. Other factors include vitamin deficiencies, infections, and vascular disease that can cause or add to the burden of neuropathy. Finally, behavioral factors can contribute to peripheral neuropathy and need to be addressed. These factors include depression, substance use, smoking, excessive alcohol, and poor diet.
Your healthcare provider will conduct an appropriate workup that may include a test called nerve conduction time to pinpoint the exact cause of the peripheral neuropathy. This information will help determine the best treatment regimen. Your healthcare provider may discontinue one of your HIV medications if it is determined to cause neuropathy. Also, if indicated, your healthcare provider may treat you for diabetes, infections, vitamin deficiency, or other issues.
Some non-medicinal approaches can be helpful in reducing symptoms of peripheral neuropathy. These approaches might include hot or cold soaks, special shoes, avoiding long periods of standing or walking. A chemical compound called capsaicin, which is made from chili peppers, can help with pain from peripheral neuropathy.
Several medications can help reduce symptoms of peripheral neuropathy, including external application of lidocaine patches, gabapentin (Neurontin), and certain antidepressant drugs. To address modest discomfort from pain, you can use ibuprofen or other over the counter drugs. For some people, marijuana may provide relief. However, the use of oxycodone and other narcotics is dangerous because of their addictive qualities. Over time, you and your healthcare provider may need to customize or modify your treatments to address your changing needs.
You and your healthcare team will need to work together to treat the symptoms of peripheral neuropathy in order for it to be successful. Your needs are likely to be different for someone else’s who has the condition. You will need to determine some combination of approaches that will reduce symptoms and improve quality of life.