The Empowered Patient's Guide to Postherpetic Neuralgia (PHN)

Being vaccinated against shingles is the best way to prevent postherpetic neuralgia (PHN), lingering pain from the shingles virus. Here's what you should know about the causes, symptoms, and treatments for this painful chronic condition.

Illustration of PHNPostherpetic neuralgia (PHN), also known as shingles, most commonly occurs as a rash on one side of the torso.

 

This is no ordinary rash but the ithcy blisters aren't even the worst part. 

A painful condition known as postherpetic neuralgia (PHN) is the horrible gift that keeps on giving for more than 10% of people who develop it following a bout of shingles.

Oh yeah and the pain? It can be significant. People familiar with the burning, relentless feeling of PHN have likened it to passing a kidney stone; mothers have described it as pain "worse than labor".

Shingles: PHN's Stubborn Mother 

PHN is triggered by shingles which is triggered by chicken pox. Some think of shingles as adult (or mature) chicken pox and while it's true both shingles and chicken pox are caused by varicella-zoster virus—a common infection of the nerves—that's pretty much where the similarity ends. 

If you had chicken pox as a kid (if you're over 50 chances are you did whether you remember it or not) the varicella-zoster virus has been residing in your body ever since. It didn't leave when your chicken pox resolved. Instead, it took up residence and remained a low-maintenance tenant until either age, a weakened immune system, stress, or some sort of cruel combination transformed the varicella-zoster virus into the herpes virus causing shingles—a much more demanding occupant.

Shingles typically starts with a variety of sensations–burning, tingling, and itching. Within days a blistery rash appears, usually on one side of the body typically around the torso, and the sensations may get more severe and painful. Within weeks the rash disappears and with it, those sensations.

So, What is PHN Exactly?

Most people with shingles will not develop PHN but certain factors, like age, may place you at a higher risk of developing it.

If you're still experiencing the pain of active shingles, sans rash, you're likely experiencing PHN, a complication of shingles. Pain in the aftermath of shingles that persists for longer than 3 months, is PHN. Unfortunately, for some people that pain is chronic and can linger for years. 

According to the Centers for Disease Control and Prevention (CDC), an estimated 10% to 18% of shingles patients will develop PHN.1 You may be at higher risk of developing it if you have one or more of the following risk factors:

Risk Factors for Developing PHN 

  • Age: People older than 60 years of age are at increased risk of developing PHN and experiencing longer lasting, more severe pain. According to the CDC, about 10% to 13% of adults aged 60 years or older with shingles develop PHN, whereas PHN is rare in people younger than 40 years old. 1 Older people who have shingles have about a 50% chance of developing PHN.
  • Severity of your shingles symptoms: If your shingles symptoms are severe, or if shingles affects your eyes, you're more likely to develop PHN.
  • Other health conditions: People who have suppressed immune systems (i.e. people on chemotherapy or people who have HIV or AIDS) are more likely to get PHN.2,3

Symptoms of PHN

People who develop PHN can experience a range of symptoms usually in the area of the skin affected by shingles, commonly around the torso and typically only on one side of the body. PHN symptoms include: 

  • Pain: Intense pain is often described as burning, stinging, jabbing, or sharp shooting. For some people, the pain can interfere with daily living from putting on clothes to sleeping.
  • Extreme sensitivity to touch: Some people with PHN report that the feeling of clothing next to affected skin is painful. Others are sensitive to temperature changes and feel pain from a slight breeze.
  • Numbness, tingling, and/or itching is less common than pain or sensitivity to touch.
  • Headaches: If the shingles rash affected your head or face, you may experience headaches.
  • Weakness and/or paralysis: Although rare, muscle weakness and/or paralysis can be the result of PHN if the nerves involving muscle control are involved.

Rash, fever, and general lethargy are fairly common symptoms.

Your doctor can diagnose you and provide you with treatment options for the immediate pain. However, you should expect a few weeks or months of moderate pain before you start to notice dramatic improvements.

The Details: Here's Where PHN Gets Complicated 

Postherpetic Neuralgia Causes

To help you understand how shingles can cause PHN, you need to know how you can get shingles. Shingles is caused by a viral infection called herpes zoster. The virus that causes herpes zoster (or shingles) is called the varicella-zoster virus, and it is the same virus that causes chicken pox in childhood. After a person recovers from chickenpox, the virus can enter the nervous system and remain dormant for many years. In some people, the virus will reactivate years later and produce shingles.4

 

 Researchers aren't exactly sure what triggers the herpes zoster virus to re-emerge after all those years, but they think it is related to age, illness, and stress.3  Shingles can be very painful, and when the virus reaches the skin, it can cause blistery rashes. These rashes usually heal in less than 3 months.

And this chain of events can lead to PHN. If the pain of shingles lingers longer than 3 months, you may have PHN.

During your bout with shingles, the virus you were fighting injured nerves in and around the skin where the rash and blisters once existed. As your immune system eventually suppressed the virus, your rash and blisters disappeared. You may have even felt less pain, and you assumed that you had won the battle with shingles.

However, a few days or weeks later, the nerve damage caused by shingles disrupts the functioning of the nervous system. The damaged nerve sends random, uncontrolled pain signals to the brain, and causes a throbbing, burning sensation along the nerve.

Over time, the confused nerves in your skin will calm. While your body repairs the damaged nerves, your doctor can help you with treatments for the pain. Common pain medications, skin creams, and drug-containing patches are all options that you and your doctor can consider.

In most cases,  the pain will gradually go away. There is a small risk the pain will return intermittently, or be with you for the rest of your life. However, the majority of patients experience no postherpetic neuralgia pain within one year.

What Else to Expect with PHN  

Not everyone with PHN will experience the same type of pain symptoms.Researchers found that patients with PHN report three major types of pain:

  1. Constant pain described as burning, aching, or throbbing
  2. Intermittent pain described as stabbing, shooting, or like electric shocks
  3. Pain triggered by but disproportionate to a stimulus  (pain caused by sensitivity to clothing on the skin, for example)5

The length of time PHN lasts also varies. Many patients report symptoms lasting from one to three months, but some patints may experience symptoms up to a year or longer.6

Because you may have to live with a certain degree of pain and discomfort for many weeks or months if you have PHN, expect some effect on your daily living.

  • Physical impacts: may include fatigue, weight loss, reduced mobility, physical inactivity, and insomnia.
  • Psychological impacts: may include anxiety, emotional distress, depression, difficulty concentrating, and fear.
  • Social impacts: may include withdrawing from social engagement, isolation, attending fewer social gatherings, loss of independence, change in social role.
  • Functional impact: may include difficulty with daily tasks such as dressing, bathing, and eating, as well as activities such as cooking, shopping, and travelling.7

How PHN Is Diagnosed 

To diagnose PHN, your doctor will ask you questions about the type, duration, and source of your pain symptoms (patient history) and give you a physical examination to assess evidence of skin scarring (prior shingles rash) and areas of your body that may display pain sensitivity.8

In some rare cases, laboratory tests may be ordered to confirm a diagnosis. Viral cultures or immunofluorescent staining may be done to distinguish the type of herpes you have, antibody testing may help support a diagnosis of subclinical herpes zoster infection, and tests like immunoperoxidase staining, histopathology, and Tzanck smear may be used to confirm a herpes zoster infection.9

According to the National Shingles Foundation, if you suspect that you may have developed PHN, you should see your doctor as soon as possible. You may be referred to a specialist, such as a neurologist, pain specialist, or anesthesiologist, who has experience with PHN.10

How PHN is Treated 

Many effective treatments are used to treat PHN, including medications, physical therapy, exercise, and a range of alternative therapies. There is no one approach to treatment that will work for everyone. A combination of treatments often is needed to reduce pain.

Medications

Your doctor may first recommend drugs you can get at the drugstore without a prescription, such as acetaminophen (eg, Tylenol), or non-steroidal anti-inflammatory drugs (NSAIDs) (i.e. Advil, Motrin, Aleve, or Naprosyn). Capsaicin cream—made from hot chili pepper seeds–is also something you may want to try. When applied to the affected skin it may help reduce PHN-related pain. All of these treatments may cause side effects, including the capsaicin cream, so it is important to talk to your doctor about the correct way of using them.

If these medications aren’t strong enough to treat your PHN symptoms, your doctor may suggest some of the following prescription medications:

  • Tricyclic antidepressants: These include drugs such as amitriptyline (Elavil), nortriptyline (Pamelor), and desipramine (Norpramin); these drugs take a few weeks to start working.
  • Anticonvulsants: These drugs include gabapentin (Neurontin), carbamazepine (Tegretol), and pregabalin (Lyrica).
  • Antivirals: These drugs include valacyclovir and acyclovir.
  • Lidocaine patches: Placed on your skin, the lidocaine in the patches penetrate your skin and go to the nerves sending the pain signals.
  • Capsaicin patches (prescription): These prescription patches contain very high concentrations of capsaicin and is applied in the doctor’s office for one hour every three months.

Several guidelines, including those published by The American Academy of Neurology, recommend the following usage of these drugs:

  • First-line treatment (drugs to try first): Tricyclic antidepressants, anticonvulsants, or Lidocaine 5% topical patch.
  • Second-line treatment: Opioids, capsaicin, or tramadol.
  • Combination therapy: Lidocaine 5% topical patch combined with a drug such as pregabalin; or combination of drugs such as gabapentine and nortriptyline or morphine and gabapentin. 10

Physical Therapy and Exercise

Two main types of physical therapy often can help to manage symptoms of PHN. These include passive treatments, such as a physical therapist applying cold packs to the painful area, and active treatments, such as an at-home exercise program.

 Engaging in regular exercise provides many benefits. Along with reducing pain, exercise strengthens your muscles, increases energy, and makes daily activities easier to engage in. It also reduces stress levels, which helps make pain more manageable.

 A physical therapist or personal trainer can help you create a workout routine that fits your needs and preferences. To help with pain reduction, the workout will probably include aerobic exercise (walking, biking, anything to get your heart rate elevated), strengthening (lifting weights), and flexibility exercises (stretching).

 Alternative Therapies

There are a number of alternative or complementary therapies that you may want to try to manage your symptoms:

  • Acupuncture:  For thousands of years, this technique has been used to alleviate pain. It is based on an ancient Chinese understanding of the body that pain is created when the energy force in the body (called Qi) is blocked. Unblocking this energy by inserting fine needles under the skin reduces pain. Acupuncture may also be performed using cold (red) laser at certain acupuncture points; this technique doesn’t break the skin.
  • Biofeedback:  This is a method used to teach you how to control your reaction to stress, which may help reduce PHN symptoms, such as pain. A machine is used to measure how your body reacts to stress, by calculating stress markers such as your heart rate and muscle tension.
  • Mind-body techniques:  Techniques aimed at reducing stress, such as yoga, deep breathing exercises, and meditation, help to get your mind off of pain and may help you better control your response to pain. These therapies also may boost your mood and improve how well you sleep, which also may help reduce PHN symptoms.

Why Your Mental Health Matters 

Living with chronic pain is not easy. Not knowing how long the pain will persist is also stressful. Chronic and unpredictable pain can be hard on your emotional and mental health.11

Depression, anxiety, emotional distress, fear—these are responses to events in our lives (such as living with chronic pain) that can change the way we daily live. 

Along with interfering with daily functioning, people with PHN often report feeling isolated. Sleep, which is essential to good mental health, is also a major problem for many people with PHN.

It is important to recognize the emotional and mental impact of PHN, and understand that feelings of depression, anxiety, and fear are not unusual to experience when living with a chronic and unpredictable condition. 

If you can gain some control over your response to your symptoms, that can help reduce the stress of chronic pain. There are many things you can do to help yourself as described below.

You may also want to seek professional help if you are experiencing emotions or thoughts that are too difficult to manage by yourself. Getting help is another way of helping yourself, and should be considered as just one more part of your self-care program.

Self Care

There are a number of things you can do to take care of yourself to help you manage the symptoms of PHN, including the mental and emotional challenges discussed above. Many of these self-care strategies are the same ones that help with overall physical and mental health. These include:

  • Healthy diet: Eating a healthy diet made up of fruits, vegetables, whole grains (like brown rice), lean proteins, and healthy fats (like olive oil) is good for overall health. Avoid or reduce your intake of foods and drinks high in sugar or salt, including processed foods (like cookies, chips, processed meats, etc) and sweetened drinks like sodas.
  • Regular exercise: Movement helps to improve muscle strength, reduce pain, and improve mental and emotional well-being.
  • Good sleep: Establishing a regular sleep schedule can improve the quality of your sleep. Going to bed and rising at the same time, sleeping in a cool and dark room, and avoiding too much stimuli close to bed can help establish a healthy sleep schedule.
  • Positive attitude: Developing and maintaining a positive outlook is key to dealing with stressful events and conditions such as PHN. A positive attitude focuses on your strengths instead of your weaknesses.

Overall, taking care of yourself is about making time for yourself and is one of the best things you can do to help cope with PHN. Along with developing the healthy habits described above, it is also important to take time to engage in activities that bring you pleasure such as reading books, watching movies, creating art, or writing in a journal.

Crush the Stigma

People experiencing a chronic pain condition, such as PHN, may feel judged or misunderstood by others. According to the Institute for Chronic Pain, many patients with chronic pain feel they are being judged for having a condition they didn’t choose to have or for the way they are coping with the condition. People may say things that make you feel guilty for living with PHN, such as “It must be all in your head” or “I have back pain too but I still go to work…Why can’t you?”. 

It is important not to buy into these judgements or the guilty and hurt feelings they inspire. You can help yourself and others with PHN by simply acknowledging what you are experiencing is difficult. Also helpful is understanding how pain, especially persistent pain, works in the body–primarily through changes in how your brain processes pain. Watch this educational video for more information Understanding Pain in Less Than 5 Minutes and What You Can About it.

What Can I Do Right Now?

You can begin to help yourself right now to manage the challenges and stress of PHN by eating better, engaging in relaxation activities, improving your sleep, moving more, and maintaining social connection with others. Engaging in physical activity, even taking short daily walks, will help you feel better. 

You also can help yourself by learning about pain and how it works in the body. Once you learn the large role played by the brain in how you experience pain, it can help you take more control over your pain and become less fearful of it. Understanding the Complexity of Chronic Pain, a 10-minute video, is another good resource.

FAQs

What is the treatment for postherpetic neuralgia?

Treatments for PHN include a variety of medications (eg, antidepressents, anticonvulsants, antivirals, patches), physical therapy and exercise, and alternative therapies (eg, acupuncture, biofeedback, and mind-body techniques). 

How long does postherpetic neuralgia last?

A person is thought to have PHN if they have symptoms following shingles that last longer than 3 months. How long these symptoms persist after 3 months can vary from weeks to years.

What are the symptoms of postherpetic neuralgia?

Most people describe the symptoms of PHN as burning, tingling, and itching. Other symptoms may include extreme sensitivity to touch, numbness, headaches, fever, or general tiredness. In rare cases, you may experience weakness and/or paralysis.

What type of pain is postherpetic neuralgia?

 Postherpetic neuralgia is a pain that affects the nerves. Neuralgia is defined as an intense, intermittent pain along the course of a nerve. In PHN, this nerve pain develops after developing a herpes infection (shingles) – therefore the name, post (after) herpetic (relating to a herpes virus) neuralgia.

 

 

 
Updated on: 10/15/20
Continue Reading:
Postherpetic Neuralgia Symptoms
×
SHOW MAIN MENU
SHOW SUB MENU