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.
Postherpetic 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: Postherpetic Neuralgia’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 Postherpetic Neuralgia 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 Postherpetic Neuralgia
- 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 Postherpetic Neuralgia
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 Postherpetic Neuralgia 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 Postherpetic Neuralgia
Not everyone with PHN will experience the same type of pain symptoms.Researchers found that patients with PHN report three major types of pain:
- Constant pain described as burning, aching, or throbbing
- Intermittent pain described as stabbing, shooting, or like electric shocks
- 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 Postherpetic Neuralgia 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 Postherpetic Neuralgia 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.
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).
There are a number of alternative or complementary therapies that you may want to try to manage your symptoms:
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.
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.
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.
1. Centers for Disease Control and Prevention. Complications of Shingles. Available at: https://www.cdc.gov/shingles/about/complications.html. Last reviewed July 2019. Accessed October 14, 2020.
2. Mallick-Searle T, Snodgrass B, Brant JM. Postherpetic neuralgia: epidemiology, pathophysiology, and pain management pharmacology. J Multidiscip Healthc . 2016;9:447-454. Published 2016 Sep 21. doi:10.2147/JMDH.S106340. Accessed October 14, 2020.
3. Centers for Disease Control and Prevention. Shingles. A Clinical Overview. Available at: https://www.cdc.gov/shingles/hcp/clinical-overview.html Last reviewed August 14, 2019. Accessed October 14, 2020.
4. The Mayo Clinic. Shingles Overview. Available at www.mayoclinic.org/diseases-conditions/shingles/symptoms-causes/syc-20353054#:
:text. Accessed October 14, 2020.
5. Mallick-Searle T, Snodgrass B, Brant J. Postherpetic neuralgia: epidemiology, pathophysiology, and pain management pharmacology. J Multidiscip Healthc . 2016;9:447-454. https://doi.org/10.2147/JMDH.S106340 Accessed October 14, 2020.
6. Mountain View Hospital. Boost Your Immune System to Fend Off Shingles.Availalbe at: https://mountainview-hospital.com/about/newsroom/boost-your-immune-system-to-fend-off-shingles. Accessed October 14, 2020.
7. Johnson RW, Bouhassira D, Kassianos G, Leplège A, Schmader KE, Weinke T. The impact of herpes zoster and post-herpetic neuralgia on quality-of-life. BMC Med . 2010;8:37. Published 2010 Jun 21. doi:10.1186/1741-7015-8-37 Accessed October 14, 2020.
8. Nalamachu S, Morley-Forster P. Diagnosing and managing postherpetic neuralgia. Drugs Aging . 2012;29(11):863-869. doi:10.1007/s40266-012-0014-3 Accessed October 14, 2020.
9. The National Shingles Foundation. Available at: vzvfoundation.org. Accessed October 14, 2020.
10. Nalamachu S, Morley-Forster P. Diagnosing and managing postherpetic neuralgia. Drugs Aging . 2012;29(11):863-869. doi:10.1007/s40266-012-0014-3 Accessed October 14, 2020.
11. Johnson RW, Bouhassira D, Kassianos G, Leplège A, Schmader KE, Weinke T. The impact of herpes zoster and post-herpetic neuralgia on quality-of-life. BMC Med . 2010;8:37. Published 2010 Jun 21. doi:10.1186/1741-7015-8-37
Does CBD Oil for Shingles Work?
If you have shingles, you know how painful it can be. If you had chickenpox when you were younger, you also know the pain of a boily rash, but did you know you probably have the shingle virus dormant in your body? Shingles is caused by the same virus as chickenpox, varicella zoster. It remains dormant in the body after a case of chickenpox and can be “activated” at anytime and doctors don’t what triggers it.
So how do you deal with the pain and rashes? Medications usually have side-effects and a case of severe shingles can be debilitating. That’s why some people are turning to CBD for shingles to avoid negative side-effects that come with many shingles medications. Studies show that CBD, or cannabidiol, the non-psychoactive component of the cannabis plant, may help improve the symptoms of everything from anxiety and depression to nerve pain and skin cancer. Now there is preliminary evidence that shingles can be improved by CBD too.
CBD for Shingles at a Glance
- What the claims are: CBD can help with rashes and pain.
- What the studies show: Research shows that CBD connects to receptors in the body and helps properly regulate cell function, which may help with symptoms of shingles.
- What the facts say: Because most studies on CBD have been done on mice and rats, concrete evidence that CBD can treat shingles directly is lacking. However, studies have shown it could possibly help with shingles indirectly through the natural mechanisms of CBD.
Shingles is a rash with shooting pain that usually shows up only on one side of the body. It’s caused by the same virus that causes chickenpox, varicella zoster. Usually people who experienced chickenpox earlier in their lives can have shingles in the future because the virus remains dormant in the nerve tissues near your spinal cord and brain after the body experiences chickenpox.
A weakened immune system usually “wakes up” the varicella zoster virus, causing shingles, which is also known as herpes zoster. A person who has cancer, HIV, is 50 or older, is under severe stress, or is taking medicines that weaken the immune system is more likely to get shingles.
Symptoms of shingles are raised dots on your body or face that eventually turn into painful, red blisters. They start to dry out over 7 to 10 days, but you’ll feel a stabbing or shooting pain, a tingling feeling in the skin, and you could have fever, chills, and an upset stomach. The shingles virus is contagious to people who have never had chickenpox and haven’t been vaccinated.
Antiviral medications may slow down the progression of shingles rash and lower your chances of having complications. Acyclovir (Zovirax), Famciclovir (Famvir) and Valacyclovir (Valtrex) would be something your doctor would prescribe. Nonsteroidal anti-inflammatory drugs like Acetaminophen or Ibuprofen can be used for the pain and inflammation. Lidocaine or calamine lotion can be used topically to numb the pain of the rash.
Using CBD for Shingles
Cannabidiol, or CBD, the non-psychoactive compound of the cannabis plant, has been shown to help improve many ailments, from anxiety and depression to epilepsy, pain, and even some cancers. Recent studies have shown that it may help lessen symptoms of shingles as well.
CBD affects our bodies because of our endocannabinoid system. The endocannabinoid system is known to regulate physiological functions in mammals in the central and peripheral nervous systems and in peripheral organs. CBD compounds attach to endocannabinoid receptors in our bodies which regulate cell function in many tissue types.
That means CBD for shingles can help in the same way. CBD connects to CBD receptors called CB1 found in cells on the skin, according to a study published in the journal Federation of American Societies for Experimental Biology in 2006.
CBD comes in many forms, like oil, cream, sprays, edibles, and more. Since shingles occurs on the skin, CBD oil for shingles could reduce pain and inflammation because when CBD links to CB1 receptors in the skin it can activate neuro-protective functions that can fight nerve inflammation and damage.
The Hartford Courant reported in 2017 that a Connecticut panel of physicians proposed to expand Connecticut’s medical marijuana laws to cover more types of conditions that could be treated by the drug, such as shingles, fibromyalgia, muscular dystrophy and rheumatoid arthritis.
The paper reported that the daughter of a 95-year-old World War II Navy veteran spoke in a public hearing urging the panel to approve medical marijuana for severe cases of shingles. “Shingles is the one thing that is taking him down,” Regina Walsh said. She read a letter from her father, who wrote shingles “left me with nerve pain that has plagued me ever since” and that medications “had no effect on the nerve pain, or they had unacceptable side effects.”
The panel concluded that shingles should be added to the list of marijuana-treatable illnesses, but rejected eczema, osteoarthritis, and severe emphysema.
One study found that CBD activated CB1 receptors in mice with stress-induced excitotoxicity (death of neurons induced by stress-activated amino acids) and neuroinflammation and improved their symptoms. Because exposure to stress induces excitoxicity and neuroinflammation in the brain, just like how the shingles virus is somehow “activated,” CBD for shingles could prove helpful. The researchers concluded that the CB1 activation by CBD could be a new therapeutic strategy against neurological and neuropsychiatric pathologies caused by excitotoxicity or neuroinflammation.
Another study published in Biomedicine & Pharmacotherapy states that CB1 receptors are more frequently found in the nervous system, particularly in the cerebellum and basal ganglia where the shingles virus remains dormant. Activating the CB1 receptor caused significant reduction in neuroinflammation in their study, reaching a similar conclusion to the study published in Neuropsychopharmacology.
Downsides of Using CBD for Shingles
Despite millions of people already using cannabis and CBD for many different reasons, as with any drug, there are side-effects. CBD is usually well-tolerated because it’s non-psychoactive, it doesn’t get you “high” like THC, another component found in cannabis. However, the more common side-effects are diarrhea, changes in appetite, and fatigue. CBD can also interact with other medications.
CBD is not regulated by the Food and Drug Administration, so dosage may not be as accurate as stated in labeling. There have been cases of CBD oil containing THC, which would give an intoxicating effect, instead of the non-psychotropic effect of CBD.
People are already using CBD for shingles and for a multitude of other ailments due to its healing properties, however there is no concrete research that proves CBD will help lessen symptoms of shingles other than possibly improving pain and being properly absorbed by the body, as research suggests.
Allodynia: A Rare, Distinct Type of Pain in Fibromyalgia and ME/CFS
Diana Apetauerova, MD, is board-certified in neurology with a subspecialty in movement disorders. She is an associate clinical professor of neurology at Tufts School of Medicine.
Allodynia is a rare type of pain, generally on the skin, that’s caused by something that wouldn’t normally cause pain. This pain type is frequently associated with fibromyalgia. Some research suggests allodynia may be associated with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as well.
Other conditions associated with allodynia include diabetic/peripheral neuropathy, postherpetic neuralgia (nerve damage from shingles), and migraines. Outside of these conditions, allodynia is a rare symptom. Knowing this term may help you communicate better with your healthcare providers and other healthcare providers as well as understand research about your illness.
Types of Allodynia
Allodynia comes in three different forms. It's possible for you to have one, two, or all three kinds. The different forms are:
- Tactile allodynia: This is pain caused by touch. This can include clothing pressing against the skin (especially the tighter parts of clothing, such as waistbands, bra straps, or the elastic part of socks), a hug, or someone touching you lightly on the arm.
- Mechanical allodynia: This type of pain caused by movement across the skin. This can be a towel as you dry yourself off, bedsheets brushing against you, or even the air from a fan moving over your skin.
- Thermal (temperature-related) allodynia: This pain is caused by heat or cold that is not extreme enough to cause damage to your tissues. Your hands and feet may burn if they get chilled, or getting too hot may make them ache.
Note that you should talk to your healthcare provider if your hands and feet turn blue when they’re cold. This may be a symptom of a different condition called Raynaud’s syndrome, which can lead to tissue damage.
It's often hard for people, even those who experience allodynia, to understand how these otherwise harmless things can cause so much pain. However, it is real pain and doesn't mean that you're crazy or making too big a deal out of "normal" aches and pains.
Allodynia is different from hyperalgesia, which is the mechanism that “turns up the volume” on pain in these conditions. Hyperalgesia takes your pain and makes it worse, while allodynia is an actual type of pain.
Allodynia is thought to be a hypersensitive reaction to stimuli. Research suggests it may result from central sensitization, which is believed to be an underlying mechanism of fibromyalgia, ME/CFS, and several other conditions. “Central” indicates the central nervous system (brain and spinal cord) and “sensitization” means that it’s become extra sensitive.
In some conditions, research suggests allodynia may be caused by peripheral sensitization, which involves the nerves outside of your central nervous system.
The pain signals of allodynia come from specialized nerves called nociceptors. The job of nociceptors is to sense information about things like temperature and painful stimuli on the skin.
Most nerves have to send signals to the brain and wait for the brain to send a signal back before they respond. Nociceptors don't have to do that—they react immediately based on what they detect. This allows you to pull your hand away from something hot before you get burned, often before you consciously perceive the heat.
When these nerves become sensitized, they start interpreting all kinds of sensations as pain. Again, this is real pain that has just as much of an impact on you as any other source of pain.
No diagnostic test can identify allodynia. However, when you report this symptom to your healthcare provider, it can help them narrow down the possible causes of your pain and any other symptoms you may have.
So far, it's unknown whether allodynia can be treated the same in every condition. Most of the common drug treatments for illnesses that involve this symptom can help alleviate allodynia and other types of pain. These include:
: Often prescribed for fibromyalgia, neuropathy, and postherpetic neuralgia, and sometimes used off-label for ME/CFS : Often prescribed for postherpetic neuralgia and used off-label for fibromyalgia and neuropathy
- Tricyclic antidepressants such as amitriptyline: Often used off-label for fibromyalgia, ME/CFS, neuropathy, postherpetic neuralgia, and migraine
Some people also get some relief with topical painkillers, such as lidocaine and menthol-based products like BioFreeze and Tiger Balm. While testing on humans hasn’t yet been done, numerous animal studies support the use of ingested and topical cannabidiol (CBD), a hemp product that doesn’t create a “high,” for allodynia.
Most complementary and alternative treatments haven't been studied specifically for their effect on allodynia, but they have been investigated for central sensitization. As that's the suspected underlying mechanism of allodynia, it's possible that these treatments may be helpful:
: A 2019 review of studies on acupuncture for central sensitization concluded that the treatment can alleviate pain symptoms, including allodynia. : Research published in 2020 suggests that practices involving mindfulness, including meditation and mindfulness-based stress reduction, are effective for alleviating pain in conditions that involve central sensitization. : A psychological approach aimed at helping you make positive mental changes that impact your health, research has long shown that it may be of benefit in central sensitization.
Warning: Massage Therapy
It’s possible for massage therapy and other hands-on treatments (such as Rolfing and chiropractic) to make allodynia worse, so it’s important to find a massage therapist who understands your condition and knows how not to aggravate this symptom.
Allodynia can make your life difficult. Something as simple as wearing a shirt may become painful, or even agonizing. Many people who have allodynia find that they need to tailor their wardrobes to reduce the impact of this pain.
Thermal allodynia can play a role in another symptom—temperature sensitivity. To manage it, you may need to do things like dressing in layers or moving your workstation away from vents that blast you with hot or cold air. You may have to learn how to compensate for both cold and hot conditions.
Some research has suggested that compounds in certain foods may alleviate neuropathic pain and the allodynia associated with it. While it's too early to say for sure, it may be that eating these foods or getting the active compounds via supplements could help ease your pain.
|Hot chili peppers||Capsaicin|
|Eggs and milk||Palmitoylethanolamide (PEA)|
|Red kidney beans, capers||Quercetin|
|Grapes, nuts, berries||Resveratrol|
A Word From Verywell
The conditions associated with allodynia are often chronic and difficult to treat. You may not ever be completely free from the pain, but by working with your healthcare provider and making appropriate lifestyle changes, you may be able to minimize its impact on your life.
Frequently Asked Questions
Sometimes. People with fibromyalgia often experience a type of nerve pain known as tactile allodynia. This can make your skin hurt from stimuli that would not normally cause pain, such as clothing tags, tight clothing, drying off with a towel, or brushing against something.
Allodynia is a type of nerve pain that can take on different forms. For some people, allodynia is a sharp pain, while others describe it as burning or stinging. Many people with allodynia experience skin pain that feels like a bad sunburn.
Allodynia is when pain is caused by something that would not normally cause pain. Hyperalgesia is an over-exaggerated pain response. With hyperalgesia, the pain is due to something that would normally cause pain. However, the level of pain caused is much greater than it should be.
Fibromyalgia Doctor Discussion Guide
Get our printable guide for your next healthcare provider's appointment to help you ask the right questions.