In the U.S. throughout the year we set aside observance days to raise awareness about HIV/AIDS among specific populations and to promote HIV prevention, testing, and treatment. March observes National Women and Girls HIV/AIDS Awareness Day and National Native HIV/AIDS Awareness Day.
Chronic pain is not uncommon for people with Human Immunodeficiency Virus, most frequently referred to as HIV. With the Centers for Disease Control and Prevention estimating that there are more than 1.2 million HIV positive people in the United States, that means many Americans are waking up every morning struggling with discomfort related to the disease.
Unfortunately, too many people with HIV aren’t getting the pain relief they need. Because HIV can cause pain in many different ways, it can be difficult to find the appropriate treatment to reduce or eliminate pain. HIV positive individuals are frequently placed on the wrong treatment plan because of miscommunication, misunderstanding, or even fear of potential treatments.
In order to find out how to treat HIV-related pain, you need to understand HIV-related pain. Let’s take a look at the various ways HIV may be causing you pain and what you can do about it.
What Causes HIV Pain?
According to The Well Project, HIV-related pain typically appears in one of three ways: as a symptom of HIV, as a sign of another illness or infection, or as a side-effect of HIV medication. To better understand how these forms of pain can appear, let’s consider how the body reacts to the virus.
Because HIV is an infection, your body will attempt to fight it off in the same way it would fight any other virus, meaning you may experience flu-like symptoms during the early stages of HIV. This may mean muscle aches, mouth ulcers, a sore throat, and swollen lymph nodes. However, these forms of pain should not be chronic and will likely go away in a few days or weeks.
As your body attempts to fight off HIV, it produces an inflammatory response.. Inflammation is the body’s natural response to any infection or injury, which typically helps the body kill the infection or repair the damage. But because HIV cannot be cured, the inflammation becomes chronic, causing more damage – and pain.
Chronic inflammation can cause the immune system to weaken. This means you are more susceptible to developing other infections or diseases, which can contribute to the pain you’re experiencing.
In order to treat the infection and reduce the inflammation it can cause, you’ll be prescribed to a number of different drugs. These “cocktails” need to be taken every day, exactly as directed, to help reduce symptoms of HIV and prevent it from developing into AIDS. Unfortunately, this medication can lead to side-effects, including pain.
How to Treat HIV Pain
HIV pain, like most other kinds of pain, can be treated – you just need to understand the underlying reason behind the discomfort. HIV pain may include headaches, abdominal pain, bone, joint or muscle pain, ulcers, or rashes.
The medical term for the nerve pain associated with HIV is distal symmetric polyneuropathy (DSP). It often leads to neuropathic pain. On exam, between half to two thirds of patients have DSP. In fact, the prevalence of symptomatic DSP is between 25-50%. Clinically, patients may experience numbness or tightness in their feet or hands, or pain, burning, and a general sensitivity.
Depending on the cause and location of your pain, there are a variety of treatment options available to you. Here are just some of the ways you can reduce your HIV pain:
- Integrative Treatments: An alternative form is best used to supplement a prescription pain-relief plan. Holistic pain-reducing practices like acupuncture, physical therapy and heat and cold therapy can help you manage or reduce your HIV-related pain. Hypnosis has shown some improvement as well.
- NSAIDs: NSAIDs, or nonsteroidal anti-inflammatory drugs, help to reduce the inflammation that may be causing you pain. NSAIDs include aspirin and ibuprofen, so you don’t need a doctor’s prescription.
- Anticonvulsants: These medications have shown effectiveness in treating other neuropathic pain conditions, and most frequently include gabapentin and pregabalin. Studies have demonstrated some benefit in patients with DSP for gabapentin and another drug called lamotrigine.
- Pain-Relieving Antidepressants: Typical drugs in this category that have a long history of benefiting patients with neuropathic pain include amitriptyline and nortriptyline. Duloxetine is another medication that is commonly used to help patients with nerve pain.
- Topical analgesics: Sometimes, topical lidocaine or capsaicin can help. Capsaicin causes a burning sensation initially which then goes away.
- Medical Marijuana: Clinical trials have shown benefit for patients with HIV pain. A standard dose and frequency is unclear, however.
- Steroids: Steroids, like NSAIDs, reduce the inflammation that HIV can cause, thus reducing your pain. Common steroids used to reduce HIV pain are prednisone and hydrocortisone. These drugs are limited to short periods of time due to the risk of side effects.
- Opioids: Opioids are the strongest level pain reliever, and reserved for uncontrolled pain. You’ll need a prescription from your doctor. If other kinds of pain relief have done little to ease your discomfort, talk to your doctor about whether an opioid may be the best drug for your situation. These medications are being significantly limited due to the concern over abuse and overdose deaths.
When trying to treat your HIV-related pain, always talk to your doctor about the over-the-counter drugs or steroids that you’re using. Because some pain relief medications can interact with your HIV medications, you may inadvertently cause additional damage and pain. Your doctor can help you identify if any negative reactions may occur and present you with other options if necessary.
Getting relief for your HIV-related pain is possible, but it requires strong communication between you and your doctor. Working with a pain-management team you can trust makes all the difference as well. Find a doctor you feel comfortable with and explain the challenges you’re experiencing.
Resources and information to help communities and organizations plan events and activities around HIV/AIDS Awareness days are available on AIDS.gov, a federal webpage. Upcoming opportunities to get involved include:
- National Youth HIV/AIDS Awareness Day – April 10
- National Transgender HIV Testing Day – April 18
- National HIV Vaccine Awareness Day – May 18
- National Asian and Pacific Islander HIV/AIDS Awareness Day – May 19
- National Caribbean American HIV/AIDS Awareness Day– June 8
- National HIV Testing Day – June 27
- National HIV/AIDS and Aging Awareness Day – September 18
- National Gay Men’s HIV/AIDS Awareness Day – September 27
- National Latinx AIDS Awareness Day – October 15
- World AIDS Day – December 1
Remember, no one is immune to pain but together we can overcome it.