Four sections of pain points. Headache, UTI, pins and needles or numbness, and shingles.

Types of Painful Conditions Associated with HIV

Learning about being HIV-positive can be difficult enough. Realizing that there are many types of pain that individuals with HIV might endure can be even more unsettling. The source of these pains can be due to HIV itself or several other illnesses, associated or not associated with HIV.

Chronic headache and migraines

Some individuals with HIV may suffer from headaches or migraines. In one study of 200 HIV/AIDS patients, 27.5 percent of individuals suffered from chronic migraines compared to the 2 percent of individuals in the average population.1

Chronic migraine is defined as 15 or more migraine days a month. There is a link between poorly controlled HIV and the frequency and intensity of migraine attacks.1

I started having chronic migraines in late 2009. While I was not diagnosed with HIV until the end of 2017, considering how advanced my HIV/AIDS was when I was diagnosed, my doctors actually assume I became positive around 2010.

In my case, both issues likely started at the same time instead of when my HIV became poorly controlled.

Peripheral neuropathy

Peripheral neuropathy is a result of damage to the nerves outside of the brain and spinal cord that often causes weakness, numbness, and pain, usually in your hands and feet.

Although it can affect different areas within your body, HIV can damage the peripheral nerves, which can lead to a neurological disorder known as peripheral neuropathy.2 The various symptoms of peripheral neuropathy include but are not limited to:2

  • Numbness or pain in the hands and feet
  • Muscle weakness in the hands and feet
  • Numbness or tingling in the extremities
  • Increased sensitivity to pain

Urinary tract infections

Urinary tract infections (also known as UTIs) are another source of pain for people with and without HIV. Although individuals living with HIV are more likely to develop urinary tract infections (UTI) due to the suppression of their immune system, these infections can escalate quickly. Most people need a simple round of antibiotics to treat their UTI, while UTIs may lead to hospitalization of HIV people living with HIV.3

As a woman, I had endured a UTI a time or two before contracting HIV. Despite this, since I have become HIV positive, I have had countless UTIs. It became so frustrating enough that I have a standing lab order to have a urinalysis done without having to see my infectious disease doctor first.

Varicella-zoster virus

Varicella-zoster virus is the virus that causes both varicella (chickenpox) and zoster (shingles). While chickenpox can occur in adults, it was most commonly contracted for children. In recent years, the "primary infection is much less common in recent years as a result of childhood vaccination."4 It is also said that chickenpox can be more severe for an adult to experience.

Shingles may or may not happen later in life. Individuals who are older and individuals who are living with HIV are more likely to develop shingles. While shingles is typically painful, the pain can “persists following complete healing of cutaneous lesions” and be “debilitating and difficult to control." This is referred to as postherpetic neuralgia.4

As a child I had chickenpox. Honestly, I grew up when the neighborhood parents would have all the kids get together for a sleepover or party once one kid came down with chickenpox. The current vaccinations explain how my 7-year-old and 4-year-old nieces have not had chickenpox.

When I was 30 years old, I ended up with shingles. It was an extremely unpleasant experience, which lasted for several weeks. The rash stayed on one side of my body. It also switched from itchy to extremely painful.

While these painful challenges are a possibility when it comes to living with HIV, it is not guaranteed. It's possible that someone could very much live their lives with HIV without having any of these painful experiences.

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