Several different types of pain may occur in people with HIV disease or AIDS. The pain may be directly due to the virus or indirectly from the accompanying infections or from treatment. The HIV virus may irritate the nerves and produce neuropathic or nerve pain. Symptoms may include burning, numbness and pins and needles sensation of the hands and feet. Nerve pain may result from dietary deficiency, drug therapy (anti viral medications, Dilantin, INH), chemotherapy, radiotherapy and surgery. Other types of pain include abdominal pain, headache, mouth pain, skin pain and joint pain. Abdominal pain is often accompanied by diarrhea and may be due to infections like cryptosporidiosis or MAI (Mycobacterium avium intracellulare) that can lead to swelling and obstruction. Tension headache or migraine may occur especially (up to 40% of the time) during AZT therapy. If T cell counts are less than 200, headache may be a warning sign of HIV encephalitis (inflammation of the brain), toxoplasmosis or lymphoma. Pain in HIV disease or AIDS may be from rheumatoid conditions such as arthritis, polymyositis (inflammation of the muscles), vasculitis (inflammation of the blood vessels) or AZT myopathy (muscle inflammation caused by AZT). Mouth pain may occur from ulcers due to yeast infection. Skin pain may be from infection with Kaposi’s sarcoma or shingles (herpes zoster).
Regular check ups with your doctor will help you to get access to the latest anti viral drugs (including the new protease inhibitors) and keep your disease in check. If you have any infection e.g. from yeast you should get treatment early. The best prevention is to take all your medications regularly. These medications will help keep up your T cell counts and prevent complications.
The various treatments depend on the severity and cause of the pain. When pain is slight, you may take pain relievers, such as Tylenol or Motrin. Apply wet or dry heat to painful muscles and joints or rub over-the-counter ointments, rubs and sprays such as Eucalypta Mint or Ben Gay. Take herbal supplements such as Quercetin, Rutin, Curcumin, Red Wine tablets, Cinnamon and Ground Clove Extracts. These contain polyphenols which are the best anti-inflammatory agents that nature has provided to us. A new ointment called Zostrix (Capsaicin) may help by decreasing the amount of substance P that sends pain signals to the brain. Zostrix is the burning ingredient in red-hot chili peppers. The ointment itself may give you a funny burning sensation that lasts the initial couple of days. Wear rubber gloves when you apply it and keep it out of your eyes. Anesthetic ointments such as Lidocaine or an anti itch cream called Zonalon (Doxepin) may also be used to numb the area of pain. Recently many patients have experienced significant relief from burning skin or nerve pain by applying specially compounded ointments containing various combinations of Ketamine, DMSO, Neurontin, Ketoprofen or Clonidine. Relief with Ketamine ointment has been comparable or even superior to that obtained from sympathetic blocks. With more severe pain, you will require stronger pain relievers such as Codeine or Ultram. These are short acting and should be taken every four to six hours as prescribed by your doctor. These medications may be combined with other medications such as anti-inflammatory drugs like Motrin, antidepressant drugs like Paxil. These other medications may significantly increase the pain relief. The antidepressant medication may also help in improving your moods. If your pain returns before the next dose of pain medications is due, you will need a long acting strong pain killer to provide background pain relief while still using the short acting pain medications for any breakthrough pain. In such case your physician may prescribe long acting morphine tablets to be taken one to two times daily and short acting Dilaudid or Percocet to be taken every four to six hours as needed. The long acting pain medications need to be taken regularly even when you feel you do not have a lot of pain. A new long acting painkiller your doctor may want to use is a skin patch called Duragesic. This is a very strong pain killer (stronger than morphine) that you wear as a patch over your chest or back. It releases medication slowly through the skin and should be replaced every two to three days. Your short-acting pain medications may be used in between. Medications used in special situations include intravenous (IV) or intramuscular (IM) injections of painkillers. These are often used in a hospital or nursing home. There are new machines for hospital and home use called PCA (Patient Controlled Analgesia) pumps. These machines have a user button which when pressed injects a small amount of the pain medication through the IV tubing. After an injection, the PCA pump will not deliver medication for a programmed (lockout) period of time e.g. 10 minutes even if the button is pressed. After the lockout time, the PCA pump will deliver medication with the next press of the button. The PCA pump reduces pain medication side effects by allowing you to give yourself frequent small doses rather than occasional big doses. For skin pain, anesthetic ointments such as Lidocaine or an anti itch cream called Zonalon (Doxepin) may be used to numb the area of pain. If you have nerve pain, anti-seizure medications e.g. Trileptal, Lyrica, Topamax or Neurontin may help ease the pain. Take the medications regularly. Other drugs that help control the nerve pain and inflammation include an intravenous (IV) infusion of the anti-seizure drug Depacon combined with IV infusion of magnesium sulfate and IV mini bolus doses of Ketamine. Some of these medications may decrease the production of blood cells so your physician may have to check your blood every few weeks. Occasionally some of these medications may produce a skin rash. Other medications that are used in treating nerve pain include antidepressants like Lexapro, Vivactil, St. John’s Wort and strong pain relievers like Vicodin or Oxycontin. Dextromethorphan is a morphine like drug that is used in cough medications to reduce coughing. It does not produce any pain relief by itself. However it prevents development of tolerance to the pain relieving effects of opioids. When used in combination with opioids Dextromethorphan may enable a decrease of up to 50% in the amount of opioid required, thus enabling pain relief with fewer side effects e.g. drowsiness. Dextromethorphan may be prepared in a pure form by a compounding pharmacist. Commercially it is often combined with other ingredients such as antihistamines in cough syrups. In addition to medications, nerve block with local anesthetic, steroids or glycerol may provide good long-term relief. A side effect of these procedures may be prolonged numbness in the area of pain. Before any procedure your doctor should explain the risks and benefits to you. Local anesthetics used alone or combined with opioids or clonidine may be injected directly into the back using a small tube called an epidural or intrathecal catheter. This may provide long lasting pain relief because the medication acts right at the site of the pain receptors in the spinal cord. When a tumor or infectious mass pressing on the nerves, bone or tissue causes pain, removing as much of the tumor with surgery may relieve the pain. Surgery may sometimes be required to remove painful nerves. The tumor size may also be reduced with chemotherapy or radiation therapy. Acupuncture and electrical stimulation therapies are sometimes helpful by increasing the body’s production of natural pain killing hormones. Alternative HIV/AIDS therapies include special diets, macrobiotics, megavitamin therapies, herbal, detoxification and heat treatments. Gather as much information as you can and be wary of treatments that sound too good to be true. Mind body therapies help in pain control by promoting relaxation, hope, control and optimism. These include relaxation training, controlled breathing, meditation, repetitive prayer, visualization, and imagery/distraction techniques, yoga and music therapy. Your doctor may also help you learn to relax by using biofeedback, behavioral modification or hypnosis. Join support groups. These are helpful as they enable you talk to others who have the same problems. You will be able to share your feelings and practice stress reduction and pain control techniques. If you are depressed you may need antidepressant medication and counseling.