Shingles and PHN: frequently asked questions and answers
Post Herpetic Neuralgia (PHN)
- What is PHN and what is it like?
- When does PHN happen?
- Why does PHN happen?
- How common is PHN?
- How can PHN be treated?
- What can I do to help myself?
- Could a TENS machine help?
- Can I contact others with the same problem?
- Could I be referred to a Pain Clinic?
- Where else might I find ideas to help the pain?
- Help the Shingles Support Society
Shingles (herpes varicella-zoster) is a reappearance of chickenpox. This often happens many years after the original chickenpox infection. In order to prevent half the cases of shingles, and lessen the severity of the rest, a vaccine to prevent shingles is being introduced – see news page.
Most often people get shingles on the left or right side of the torso, on a patch of skin served by nerves from a single ganglion (nerve ‘junction box’). This often follows the line of a rib. Sometimes, it will instead appear somewhere else on the face or the body.
Red patches are usually the first sign of the rash appearing, and there may also be:
- Itching, tingling or burning under the skin.
- Pain around the affected area, usually on one side of the torso, sometimes elsewhere on the body.
- Fluid filled blisters that burst and weep and turn into sores. They may not come up all at once, but form and slowly heal over a period of 2 to 5 weeks. The skin then crusts over and heals, apart from a little sensitivity or 'nerve ache' which soon disappears. This may signal the end of the shingles for many people but some people develop post herpetic neuralgia (PHN).
After a chickenpox infection, the virus retreats to a neural ganglion (junction box) in the nerves beside the spine. It remains there in a dormant state for the rest of your life. One day, something 'triggers' the virus and causes it to reactivate (perhaps when you are run down or unwell, but no one really knows why) and it comes out as shingles.
Anyone who has had chickenpox can develop shingles – and most people have chickenpox in childhood: it is one of the common childhood illnesses and is usually trivial. (Chickenpox in adults can be more severe and if they are seen by the doctor within 24 hours of the onset of the rash, they will be given antiviral pills.)
Shingles is more likely to occur in older people.
People who have not had chickenpox cannot get shingles. (Some people with shingles believe that they have never had chickenpox. This simply means that their original bout of chickenpox was mild and not diagnosed at the time – or they have forgotten because it was such a long time ago.)
There is a new vaccine to prevent shingles which is slowly being introduced. The aim will be to vaccinate everyone between 70 and 79. At present, anyone who was 70, 78 or 79 on the 1st September 2014 is entitled to be vaccinated. This vaccination prevents half the cases of shingles, and the cases that do happen in vaccinated people are milder and less painful.
About 194,000 people, in England and Wales, get shingles every year. About half of these will develop post herpetic neuralgia (PHN).
People do not catch shingles - it happens to people who have previously been infected with chickenpox.
Shingles is infectious for people who have not had chickenpox - but they have to touch the rash to catch the virus. They will then develop chickenpox.
People who have had chickenpox already will not be at risk.
When people who have had chickenpox encounter the disease again, it increases their immunity and means they are less likely to develop shingles.
WORK or SCHOOL: A person can only catch chickenpox by touching the shingles sores, so when shingles is under clothing/ bandage, there is no risk to other workers/students.
Although very rare, shingles can occur inside the eye. It is called zoster ophthalmicus. Only one eye will be affected. This must be treated with antiviral medication: if untreated the eye may be damaged.
Your doctor may prescribe a course of aciclovir (Zovirax) tablets. Or possibly Valtrex (valaciclovir) or Famvir (famciclovir). If treatment is started within 72 hours, it may reduce the severity of the episode. This is why it is important to visit the doctor as soon as you become aware of the first symptoms of shingles so that treatment can be started immediately.
Keep the sores clean, but do not use scented soaps or bath oils and do not rub too hard as this will delay healing. You can soothe the rash with ice pack or a pack of frozen peas wrapped in a flannel or tea-towel (so as not to cause frost-bite) or a soothing lotion (such as calamine) applied to the rash. Some people have found aloe vera gel gives relief.
Aloe vera plant
The 'Ideas from other sufferers ' page lists suggestions from other sufferers.
Wear loose fitting, comfortable clothes preferably in a natural fibre such as cotton.
You may find vitamins help, especially those related to skin and nerve healing like vitamins A, E and B-complex. Most vitamins depend on a good supply of other vitamins to function efficiently, so do make sure your diet contains plenty of fresh fruit, vegetables and cereals. Remember - the skin will heal, so try not to worry.
Post Herpetic Neuralgia (PHN)
PHN is the name given to the shingles pain when it has been going on for a month or more after the shingles sores have healed.
PHN can be felt as "itching", "irritation," "burning," "tingling," "supersensitivity," "numbness" or "soreness" but to simplify our text we will always call it "pain"
Shingles is not something that other people will catch from you - see above.
It may begin as the symptoms of shingles subside and can last a few weeks, months or occasionally years. It can appear several weeks or even months after the shingles has gone.
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PHN happens when the chickenpox virus damages a sensory nerve during the shingles outbreak. The damaged nerve sends abnormal messages or even stops sending them so there is numbness. Sometimes there can be changes in the nerves in the spinal cord - this is why cutting the affected nerve does not cure the pain of PHN. As you get older, your chance of developing PHN increases.
In England and Wales, each year around 100,000 people with shingles go on to develop post herpetic neuralgia (PHN).
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It is difficult to treat this kind of pain. Your doctor can prescribe strong pain killers, but often these have little effect on PHN, although Tramadol has been shown to help. Other strong prescription painkillers (opioids) have sometimes helped some people, so they may be worth a try.
Other forms of medication that your doctor may prescribe can be surprisingly effective. There are pills, plasters/patches and creams – so don’t give up hope. It is important to be aware that some of the drugs that are now used as PHN treatments were first developed to treat other conditions. In some cases, these original uses are still the only ones referred to in the accompanying leaflet.
You can see medical treatements in detail with dosages and references.
14.1 - Antidepressant drugs: If your doctor has prescribed one of the tricyclic drugs to combat PHN, you may find it causes drowsiness and/or a sensation of ‘dry mouth.’ You should start off at a very low dose and gradually build it up. ‘Dry mouth’ can be alleviated by sips of water or fruit juice, or by sucking a sweet or mint. (NB you can buy sugar-free or diabetic sweets if you are controlling your weight.) These side effects will wear off when you’re used to the treatment. As Mrs S. reported: "... it did ease the dreadful pain. I had one or two side effects when taking the pills but I could cope with them - to ease the pain was the main thing and amitriptyline did that."
14.2 - Anti-epileptic drugs: Gabapentin (which was developed to control epilepsy) has been shown to be an effective way to block PHN and has been licensed by the Medicines Control Agency for treating PHN and other neuropathic pains. (In the US it is now used more for controlling pain than epilepsy!) Start with a low dose, and increase to about 400mg three times a day. It does not interfere with other medication you may be taking and has remarkably few side effects even with dosage as high as 800mg three times a day.
14.3 - Axsain cream (made from chilli peppers or ‘capsaicin’) has been proven to be effective at stopping the pain. You rub it on, or near, the place where the nerves are itching/painful, that is, in the same dermatome region. If the pain is near your eye or under your hair, you can rub the cream on your cheek well away from your eyelid, or on your forehead. Use a small (pea sized) amount 3 or 4 times a day for about 3 weeks. It stops the pain for seven out of ten people. Since Axsain cream can ‘burn,’ some people rub in an anaesthetic, or numbing, cream about 15 minutes before applying Axsain. This is ‘lidocaine BP’ which can be bought, without prescription, as a 2% gel or a 5% ointment. If your chemist doesn’t have it in stock, s/he should be able to get it in for you. Lidocaine 10% spray can be bought under the brand names Xylocaine or Stud.
14.4 - Versatis plasters are large 'patches' which can now be prescribed for PHN. These are made with a special gel allowing the active ingredient, lidocaine, to seep into your skin. You wear one for 12 hours (day or night as you prefer) on or near the painful area and leave the skin open to breathe for the other 12 hours. They are particularly helpful for people who don't want to take pills.
14.5 - Qutenza (capsaicin) 8% is a new treatment that medical personnel at specialist pain centres around the country are being trained to use. It is a skin patch containing a synthetic equivalent of the naturally occurring capsaicin compound found in chilli peppers. A doctor or nurse will numb the area using an anaesthetic cream and the patch is then applied for one hour. This treatment should reduce or eliminate the pain of PHN for three months, after which the treatment can be repeated if it has helped.
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The Shingles Support Society’s 19 page information pack includes 2 pages of "Ideas from other sufferers" suggestions from others who are living with PHN. These are alternative ways of dealing with pain. Some of these have not been proved scientifically, so we cannot endorse them, but there are studies showing that many people find them helpful. Send a small donation to the Shingles Support Society. Or you can click through to the shop area here and scroll down the page to where you can order the 19 page "Shingles Pack".
Transcutaneous electronic nerve stimulation (TENS) machines give tiny buzzing sensations and these prevent the nerves from sending their false pain messages to the brain. You should be able to try a TENS unit before you buy it to see if you are one of the people who benefits from it - this could be with a physiotherapist or at a Pain Clinic. When you buy one, make sure the company has a money-back guarantee.
The Shingles Support Society’s 19 page information pack includes a list of patients like you with PHN who would like to hear from other people. Often communicating with someone else who knows what it feels like can be helpful and reassuring. Please let us know if you would like to be added to the list. Send an SAE with a small donation to the Shingles Support Society; or you can click through to the shop area here and scroll down the page to where you can order the full 19 page "Shingles Pack.
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Your doctor could refer you to a pain clinic: either NHS or private. If you send your postcode to British Pain Society, Churchill House, 35 Red Lion Square, London WC1R 4SG (email@example.com), they will send details of your nearest clinic and a 10 page booklet on the treatments they use.
The British Holistic Medical Association can sell you a tape and booklet by James Hawkins on 'Coping with Persistent Pain' from the BHMA at 59 Lansdown Place, Hove, E. Sussex BN3 1FL (Email: firstname.lastname@example.org; tel. 01273 725951) £9.20. (This includes post and packaging.)
The Shingles Support Society is a sub-group of the Herpes Viruses Association (HVA) a registered charity, offering support to patients. As a voluntary organisation, we depend on your donations to enable us to continue to serve the community - we rely on your generosity.
Please would you make a donation? Any amount will help, no matter how small. Cash or postage stamps, cheques or postal orders (made out to 'SSS') will help to ensure our work continues. Click here to find out how to donate. Or you can click through to the shop area here and go down the page to where you can order the full 19 page "Shingles Information Pack" as described above.
Perhaps you would consider making a legacy. Thank you!
Marian Nicholson, Director
We know that many people leave money to charities in their wills. We would really appreciate it if you would consider this kind of donation. If you already have a will, you can leave something to the Shingles Support Society in a codicil, that is an addition to your existing will. This is easier (and cheaper) than getting a whole new will.
We were left money by Mr Stone, whose son informed us: "My father found the information that you supplied made such a difference to his quality of life in his final years that he wants others to benefit as well."
Mrs Scott’s church arranged a special collection for us in her memory and donated it to our charity. We were very touched.
Mr Goldman asked the Rotary Club that he was very involved with, to send the money raised after his death to us: "The Shingles Support Society is my favourite charity" he told them.
As a registered charity (no. 291657) we submit details annually to the Charity Commission so that it can ensure that we are fulfilling our constitutional ‘statement of aims’. You can be sure that your legacy would go to help spread information about treatments for shingles and PHN to everyone who needs it.
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This page was last updated on 12-12-2014 and will be revised no later than 12-12-2017