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Peripheral Neuropathy and HIV/AIDS

March 2013

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How Do You Know if You Have PN?

Signs of PN include:

  • Tingling
  • Pins and needles
  • Numbness
  • Itching
  • Feet or hands feeling like they are asleep
  • Stumbling when you walk
  • Feet or hands throbbing or cramping at night
  • Sudden sharp shooting pains

It may be easy for you or your health care provider to overlook slight or occasional sensations like the ones listed above. Do not ignore these symptoms, as they may get worse. If you have any of these symptoms, talk to your health care provider right away so that you can receive early diagnosis and treatment.

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Your health care provider will examine you and ask questions about your symptoms, medications and supplements, work environment, exposure to toxins, history of alcohol use, and family history of neurological disease. Usually, PN is diagnosed based on signs and symptoms you report. However, your health care provider may also order tests to determine the type and extent of nerve damage. Blood tests to rule out other potential causes of PN are most common.

If your symptoms are unusual, your provider may refer you to a neurologist, who may suggest nerve conduction velocity (NCV) testing or an electromyography (EMG) test for further evaluation. NCV looks at the speed of the signals your nerves send, and EMG looks at whether your muscle can respond normally to an electrical signal from a nerve. Other types of sensory testing and skin biopsies are generally used in research.


PN Treatments

Unfortunately, there are no approved medical treatments to cure PN. For now, the key to treating PN is to remove the cause and control the pain. If HIV drugs are the cause of the PN pain and those drugs are stopped when symptoms of PN are first noticed, the pain most often goes way. However, this may take up to eight weeks since nerves are slow to heal.

Removing the Cause

It is important to take your HIV drugs on schedule and as prescribed so that your viral load stays low and your CD4 count remains high. This way, you can minimize HIV's effect on your nervous system.

If you are on a d-drug, talk to your health care provider about stopping or switching the drug. If you decide to stop or switch a drug, it may take six to eight weeks for the PN symptoms to decrease. If the symptoms continue, the PN could be due to HIV.

Relieving the Pain

Controlling the pain can require a combination of drugs and other therapies. Remember to discuss any medications, supplements, or therapies you are currently using with your health care provider.

  • Pain relievers: Using Tylenol (acetaminophen) or Advil (ibuprofen) for mild symptoms of PN may help. If the pain continues, your health care provider may prescribe opioid-based narcotics like codeine. It is important to know that narcotic pain killers can lead to addiction.
  • Anti-seizure drugs: Your health care provider may prescribe drugs such as Neurontin (gabapentin), Lamictal (lamotrigine), Lyrica (pregabalin), or Topamax (topiramate) for nerve pain.
  • Antidepressants: Some antidepressants have been found to relieve pain by changing the chemicals in your brain that help you feel pain. Drugs such as Elavil (amitriptyline), Pamelor (nortriptyline), or Cymbalta (duloxetine) may help.
  • Topical lidocaine patch called Lidoderm
  • Transcutaneous Electrical Nerve Stimulation (TENS): A therapy in which gentle electrical current between electrodes placed on the skin eases pain.
  • Capsaicin: Capsaicin is the "hot" chemical produced in chili peppers. It is available over-the-counter in creams or patches and may cause a burning sensation when you begin using it. It works by reducing a substance that sends pain signals to the brain
  • Alternative therapies such as acupuncture, massage, yoga, hypnosis, biofeedback, and meditation
  • Supplements such as alpha-lipoic acid, gamma linolenic acid (found in evening primrose oil), or acetyl-L-carnitine
  • A visit to the podiatrist to discuss how to care for your feet and what shoes or socks you should wear


AIMS for PN

The easy way to remember the keys to early diagnosis, treatment and management of PN is to think AIMS:

Awareness -- Take the time to notice what your body feels like and how you move.

Information - Never stop asking questions, reading, trying new drugs, therapies, or tools.

Medical Team -- Choose health care providers who are knowledgeable about HIV and neurological problems and listen to you and answer your questions.

Support -- Finding support is critical. Peer organizations or local HIV support groups can offset the sense of helplessness and isolation felt by many people who experience chronic pain. Talking with peers can give you an opportunity to share your frustrations and successes with those who understand what you are going through.

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This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with TheBody.com to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from TheBody.com or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.
 
See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy

Reader Comments:

Comment by: Jake (Uk) Fri., Mar. 14, 2014 at 8:11 pm EDT
I found modern antiperspirants made my symptoms much worse. I reverted using a cheap roll on deordorant or without when I can. I haven't seen any link with antiperspirants mentoined before.
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Comment by: David Salih, L.M.T. (Miami Beach, FL) Tue., Jun. 25, 2013 at 6:53 pm EDT
I have a client who suffered from PN for years, due to a reaction from an antibiotic he took. After one session of massage, including reflexology, he felt a marked improvement and relief. Granted, the foot massage work was somewhat painful, especially in our first session, and I took care not to push the limit too far. He bought a tool so he can mimic the reflexology work I did and go gradually deeper, and found great relief in doing so. There are cases known where a limb has been saved due to the increase in circulation from massage, which is a main issue in PN. I highly recommend anyone dealing with this issue seek a massage therapist with reflexology training and experience with PN.
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Comment by: Bob M. (Yountville, Ca.) Mon., Apr. 22, 2013 at 8:05 am EDT
I feel like I am standing on a tennis ball in each shoe and it really effects my balance when I am walking or standing over a golfball. to get ready for my next shot. Also, when I am walking I constantly look at the ground, if I don't and step on a small rock, I am going down.
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Comment by: william G. (Bethlehem, Georgia) Sat., Aug. 25, 2012 at 6:13 pm EDT
I was told that virgin coconut oil will cure neuropathy in my feet, I have no balance or stability.
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Comment by: Bill (Medford, OR) Mon., May. 28, 2012 at 10:47 am EDT
I believe I acquired Neuropathy by taking LISINOPRIL for several years. My primary physician belittled the my complaints of pain and numbness, finally saying "Nobody should live past 75." I'm 73 so I fired him. Clearly, he was not going to help. When I found a new doctor he referred me to a Neurologist who diagnosed my condition as "Moderate Polly Neuropathy." Because I earlier had a blood transfusion I worried about the possibility of HIV. That test was negative. My new doctor took me off LISINOPRIL and changed my high blood pressure medication to LOSARTAN. I'm getting better slowly. During 3 months the feeling of deadness in my toes changed to pain with itching inside - which further changed to mild discomfort.

I had a inguinal hernia Repaired just after firing my prior physician and, because of the Neuropathy, I was in great pain from this surgery for 2 months. I was given HYDROCODONE-ACETAMINOPHE for the pain.

I filed a complaint with the state medical board about three months ago. I heard from them three weeks ago. The letter said they were starting an investigation.
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Comment by: viviancddingtn (NewJersey) Fri., Nov. 18, 2011 at 2:38 pm EST
how long dosr it take a nerve to regenerate?
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