Pain in HIV+ people is often caused by the virus attacking the nerve endings in the arms and legs. This results in burning, numbness and tingling in the extremities (fingers and toes). This condition is called peripheral neuropathy or distal symmetrical polyneuropathy (DPSN) and can be so uncomfortable that patients are often reluctant to walk and perform the activities of daily living. Painful neuropathy can also be caused by some of the anti-HIV medications, especially Videx (ddI) and Zerit (d4T).
There are many kinds of medications that can effectively treat pain, including aspirin and acetaminophen (Tylenol). Opiods are the main type of drugs used for treatment of severe pain, but doctors may be reluctant to use them because they can be addictive. However, the development of drug addiction in patients who take opioids for pain is very small. Despite this, a recent survey in California suggested that concerns about addiction can prevent doctors from providing adequate pain treatment and may even cause them to withhold opioid therapy.
The Drug Enforcement Agency (DEA) is in control of narcotics (opiods are narcotic drugs) and their use both medically and illicitly. There is confusion at times between the medical use of narcotics for pain and the illegal use of narcotics for recreation. Since doctors may be unsure of who is an addict and who is not, some patients do not get the pain medication they need because their doctors fear they are giving narcotics to active drug users.
Even if a person is a drug addict or a recovering drug addict, he or she may still be experiencing severe pain and need treatment. In these cases, a doctor should treat the pain, but set very clear limits and guidelines in the treatment. It may also be a good idea to refer the patient to a pain specialist or a pain clinic. If the patient starts abusing the pain medications, by taking too much or taking illicit drugs and/or alcohol, there should be clear consequences. The patient might be prescribed different medications that are not narcotic or they might need to enroll in an addiction treatment program at the same time. In extreme cases, the patient might be discharged from the pain clinic.
There can be additional challenges in treating pain in HIV+ people because some of the anti-HIV drugs can interfere with narcotic medications. In these cases, doctors may need to increase the amount of pain medication. It is very important that your doctor knows all the drugs you are taking (including prescription, over the counter, street drugs and herbal preparations) so that he or she can determine if any drugs will interact and adjust the medications properly.
The best thing to do is be honest with your doctor. The first step is to tell your doctor if you are experiencing pain. Also be open about any issues you have about substance use. If you are in recovery, speak to your doctor about ways to take pain medication without triggering a relapse. You can also tell your sponsor or other recovery program people about your use of pain medications so they can support you. If you think your doctor is not providing adequate pain medication because he or she is worried you might start abusing it, talk about your concerns and ask for closely supervised treatment and support.
Pain in HIV+ people can be from the disease itself, anti-HIV drugs or other, unrelated conditions. Nonetheless, the pain is real and patients suffer if it is under-treated by their doctors. Even if a patient is an active addict, has a history of addiction or is in a methadone program for addiction, the pain must be evaluated and treated as part of regular medical care.
Lauren Shaiova, M.D. attending at Beth Israel Medical Center Dept. of Pain Medicine and Paliative Care and Peter Kruger HIV/AIDS Clinic.