People living with HIV often have to deal with chronic pain. You can have it during all stages of the condition and in almost any part of your body.
Severe pain can make it hard to sleep, work, and live a normal life. Be sure to talk with your doctor about any pain you have. It’s important to find the cause and find ways to relieve it that work with your HIV treatment.
What Can Cause It
Your pain may come from different places:
The HIV itself. The virus can damage nerves throughout your body. That can cause intense pain. Nerve pain is the most common pain when you have HIV.
Another illness. HIV weakens your immune system. This means you’re more likely to get new infections, such as hepatitis or pneumonia. And old infections, like herpes, may come back. One type of herpes virus causes shingles – a burning rash along nerve pathways. For some people, the pain of shingles can last long after the rash goes away.
Side effects from your medicine. HIV drugs called antiretrovirals, or ARVs, can cause long-term side effects, like diabetes, bone loss and fractures, and painful rashes.
Sometimes, all three play a role.
Types of HIV Pain
You might have one type of HIV-related pain, or you could have different kinds at the same time.
Peripheral neuropathy. This type of nerve pain causes numbness, tingling, and burning. It mainly happens in your legs and feet, but it can also happen in your hands and arms. It can come from HIV itself, diabetes, or older HIV drugs.
Belly pain. HIV meds can cause nausea, diarrhea, and stomach cramps when you start taking them. These symptoms often go away in a few days or weeks. But sometimes, they last longer.
Headache. This is a common side effect of medicines you take for HIV. Your headache may go away in a few weeks as your body adjusts. But sometimes, it persists. In other cases, they show up months after you start HIV treatment. Head pain can also be a symptom of other serious infections, like advanced syphilis or herpes.
Muscle, joint, and bone pain. Everyone has a few aches and pains now and then. It can be hard to tell if they’re from normal aging, arthritis, physical activity, or HIV and its treatment. You usually feel muscle pain from HIV in your legs, back, and hips. It can be serious, so be sure to mention it to your doctor.
Fibromyalgia (fibro). When you have fibro, you hurt all over. This happens because crossed signals in your brain and spinal cord make pain feel more intense. Make sure to let your doctor know if you think you may have it.
Rashes. Certain HIV meds can cause painful rashes. Some are mild and go away on their own. Others can be severe. Doctors call these hypersensitivity reactions. Sometimes, they can be an allergic reaction to a drug. Whatever causes them, hypersensitivity reactions can be fatal. Tell your doctor about any rash you have, even if it seems like it's no big deal.
Mouth ulcers. These painful sores are more common in people who have weaker immune systems because they aren’t on treatment for HIV. These can be a sign that more infections are coming.
More on HIV Joint Pain
Many people with HIV will get this common symptom at some point, usually later in the course of their disease.
The pain could be severe at times. You may notice it more often, and it might get worse as your disease progresses. But some people only have mild pain, or none at all.
Improved HIV therapies make joint pain less likely. If it does happen, there are ways to treat and manage it. Let your doctor know right away if you notice it.
What’s the link between HIV and joint pain?
Achy joints are often an early sign that you have an HIV infection. In the first few weeks after you get the virus, you may have flu-like symptoms that include joint and muscle pain. It could last for a short time, then go away for years.
HIV can raise your arthritis risk: People with HIV may be more likely to get painful types of arthritis, like reactive arthritis, gout, rheumatoid arthritis, or psoriatic arthritis, with chronic, or long-lasting, inflammation.
HIV may cause joint pain: Sometimes the HIV infection causes joint and muscle pain, along with inflammation of joints and soft tissues around your joints. The virus can get into the fluid inside your joints and trigger painful reactions. HIV can also make pain, inflammation, or long-term joint damage worse.
HIV meds are sometimes to blame: Some medications used to control an HIV infection can cause joint pain, but these drugs are older and not prescribed as often these days. Most current HIV treatments shouldn’t cause these problems. But HIV treatment revs up your immune system to get your disease under control. As this happens, your immune system could attack your joints and cause pain and inflammation.
The pain could also result from drugs you take for other conditions. Statins to control high cholesterol can lead to muscle pain around your joints.
Which joints are affected?
Arthritis pain related to HIV or medications can affect many joints, including your:
- Knees
- Ankles
- Feet
- Fingers
- Lower back
- Shoulders
- Elbows
How is HIV joint pain diagnosed?
See your doctor to diagnose the cause of your problem and get treatment. They may ask you to rate your pain on a scale from 1 to 10, or to describe how it feels – does it burn, throb, stab, or ache? Let them know if:
- Your joint pain comes and goes, or is constant
- The pain is new or has bothered you for a while
- Any activities or treatments seem to make it better or worse
It’s important to make sure an infection other than HIV isn’t causing your pain. Because HIV weakens your immune system, your body may not be able to fight off bacterial infections that could cause joint pain and damage. You may need X-rays, blood tests, or synovial fluid tests to find out what’s causing your problems.
How Is HIV-related joint pain treated?
There are many ways to manage the pain, with or without medications. If an HIV infection is the cause of your joint pain or swelling, antiretroviral therapy (ART) drugs to control the virus may ease your pain. If your ART drugs or statins for high cholesterol cause muscle pain around your joints, the doctor may switch you to another drug or suggest something just to control your pain.
Several medications help manage joint pain and inflammation:
- Acetaminophen
- Nonsteroidal anti-inflammatory drugs (NSAIDs), like ibuprofen or aspirin
- Celecoxib (Celebrex)
- Topical pain relief rubs like capsaicin or lidocaine to ease pain in a specific joint
- Tramadol (Ultram) for mild to moderate pain
- Steroids like prednisone for more severe inflammation and pain
- Opioids, like hydrocodone combined with acetaminophen (Vicodin), for moderate to severe pain
Nondrug pain relief therapies help you manage the pain too, either paired with pain medicines or on their own. These treatments help your brain release endorphins, a natural pain-relieving chemical:
- Physical therapy (PT)
- Massage
- Acupuncture and acupressure
- Meditation
- Exercise
Heat or cold therapy is another simple way to manage your joint pain. Place a heating pad on a sore joint or apply an ice pack to ease swelling and pain.
How to Manage the Pain
Pain that comes from HIV can be hard to treat. Many common pain relievers don’t mix well with HIV treatments. They also can bring their own side effects.
Here’s what you can do:
Talk to your doctor about something called cognitive behavioral therapy. The idea behind it is that by learning to lessen or change negative thoughts or behavior linked to your pain, you can change how it affects you. Talk with your doctor about it.
Try yoga. It’s a great way to ease headaches, arthritis, and sore muscles.
Stay active. For the best pain relief, combine cardio, weight training, and stretching on most days. Talk with your doctor first to find out which exercises would be best for you.
Consider acupuncture. This ancient practice involves putting very thin needles into your body at specific points. It can help ease many types of pain, including low back pain, nerve pain, fibro, shingles, headaches, and cramps.
