Shingles Support Society
Welcome to the Shingles Support Society homepage. We give information on shingles and post-herpetic neuralgia (PHN for short), what they are and how to treat them. This document contains:
Shingles - Q and As
Post herpetic neuralgia (PHN) - Q and As
Help the Shingles Support Society
Notes for patients from Dr Bowsher
Notes for doctors from Dr Bowsher
Links to pain organisations
These shingles pages were reviewed on 3rd June 2008.
Send SAE and donation (at least £2.50 please) for the full 19 page information pack. It includes two pages of self-help advice from other sufferers, a two page contact list of names/addresses of other people who'd like to share experiences of shingles, information on TENS and two manufacturers who'll refund your money if the TENS doesn't help you, information for doctors on the use of gapapentin for treating pain - and more. You can also buy this information pack on-line: click here and then go down the page to the "Shingles Pack" where you can order it.
People who are blind or partially sighted can receive these leaflets dictated onto a standard cassette: send a donation (at least £2.50 please) or phone 020 7607 9661 to order this with a credit or debit card.
1 - Is shingles
common?
About 250,000 people in the UK get shingles every year. About 100,000
people of these are
affected by post herpetic neuralgia (PHN).
2 - What is shingles?
Shingles (herpes varicella-zoster) is a reappearance of chickenpox. This
is often many years after the original chickenpox infection.
3 - Who will get
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 distressing;
but it is generally no more serious than in children.)
Shingles is more likely to occur in older people and by the age of 85, around 60% of us will have had shingles.
People who have not had chickenpox cannot get shingles. (Some people with shingles claim that they have never had chickenpox. This simply means that their original bout of chickenpox was so mild that it was not diagnosed at the time – or they have simply forgotten because it was such a long time ago.)
4 - How do people
get shingles?
When you recover from a chickenpox infection, the virus retreats to a
'junction box' in the nerves beside the spine. It remains there in a dormant
state for the rest of your life. Something 'triggers' the virus to reactivate
(perhaps when you are run down or unwell, but no one really knows why)
and it comes out as shingles.
5 - Is shingles infectious (catching)?
People do not catch shingles from each other. A person with shingles cannot
give another person shingles, nor can you catch shingles from someone
with chickenpox. In fact, it has been found that when people who have
had chickenpox encounter the disease again, it increases their immunity
and means they are less likely to develop shingles.
Chickenpox is infectious - people can give it to someone who has not already had it. Someone with shingles may give another person chickenpox if that person has never had chickenpox before, through direct contact with the shingles sores. This is because it is the same virus. Once people have had chickenpox, they do not usually get it again.
6 - What does shingles
look like?
Most often people get shingles on one side of the trunk or torso, front
and back, in the area covered by the affected nerve. Occasionally it occurs
elsewhere on the body or the face.
Red patches are usually the first sign of the rash appearing, and possibly:
- Itching, tingling or burning under the skin.
- Pain often occurs: around the area of nerve distribution, usually on one side of the trunk or torso, sometimes elsewhere on the body. Some people may feel very tired or may develop a slight temperature.
- Blisters come up, filled with fluid. These then 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 up, apart from a little sensitivity or 'nerve ache' which soon disappears. This may signal the end of the shingles for many people.
7 - Can you get
shingles in the eyes?
Rarely, shingles can occur inside the eye. This must be treated with antiviral
medication, as if untreated the eye may be damaged. It can be confused
with herpes simplex virus and herpes keratitis (infection of the eye).
8 - Can shingles
be treated?
Your doctor may prescribe a course of Famvir, Valtrex or Zovirax (aciclovir)
tablets. These do not work for everybody, but 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.
9 - What can I
do to help my shingles?
Keep the sores clean, but do not used scented soaps or bath oils and do
not over wash as this will delay healing. You can sooth the rash with
ice cubes wrapped in a flannel or tea-towel and placed in a plastic bag
(to avoid dripping), a pack of frozen peas wrapped in a towel or a soothing
lotion (such as calamine) applied to the rash. 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 sores will clear up,
so try not to worry. Ultrasound is sometimes effective in the acute stage,
particularly for the head and face.
1 - Is PHN common?
About 100,000 people of the 250,000 people with shingles each year are
affected by post herpetic neuralgia (PHN).
2 - When does PHN
happen?
It may begin as the acute 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.
3 - Why does PHN
happen?
PHN happens when the chickenpox virus damages a nerve during the shingles
outbreak. Not only does the function of the damaged nerve become abnormal,
as is shown by the loss of ordinary sensation, but changes seem also to
be induced in the spinal cord or central nervous system as well. We know
this because, unfortunately, cutting the affected nerve does not cure
the pain of PHN. As you get older, your chance of developing PHN increases.
4 - What is PHN
like?
PHN can be felt as "itching", "irritation," "burning,"
"tingling," "supersensitivity," "numbness"
or "soreness" but to simplify our text we will always call it
"pain"
5 - How can PHN
be treated?
Ordinary painkillers have little effect on PHN, however Tramadol (a strong,
prescription-only, painkiller) has been shown to help.
A recent trial found that controlled-release morphine 91 mg or methadone 15mg "effectively relieved pain" and did not cause fuzziness unlike the tricyclic antidepressants.
Other prescription items that your doctor could consider are listed: these all take a while (3 or 4 weeks) for the full effect to be noticed, so do not give up too soon. Because the antidepressant drugs are much cheaper than the anti-epileptic drugs, your doctor may want you to try these first. Axsain cream and Versatis plasters (also on prescription) are alternatives for people who don’t like to take pills. See Dr Bowsher’s Notes for Patients for more details.
5.1 - 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."
5.2 - 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.
5.3 - 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 and it is cheap, probably less that £2.00. Lidocaine 10% spray can be bought under the brand names Xylocaine or Stud for around £5.50.
5.4 - 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.
6 - What can I do to help myself?
The Shingles Support Society’s 19 page information pack includes
2 pages of "Readers’ Tips" 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 an SAE with a small donation to the Shingles Support Society. 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 Pack" as described above.
7 - Could a TENS machine help?
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 - or make sure the company has a money-back guarantee. Some people
have found that ultra-sound has relieved their pain.
8 - Can I contact others with the same problem?
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 go down the page to where you can order the full 19 page "Shingles Pack" as described above.
9 - Could I be referred to a Pain Clinic?
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 (info@painsociety.org), they
will send details of your nearest clinic and a 10 page booklet on the
treatments they use.
10 - Are there other organisations that can help?
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: bhma@bhma.org;
tel. 01273 725951) £9.20. (This includes post and packaging.)
11
- Links
www.herpes.org.uk/shingles
Dr Bowsher’s pages on drug treatment (one page for patients, four
pages for doctors)
www.neuropathy-trust.org
Neuropathy Trust
www.liv.ac.uk/pri The Pain Research
Institute
www.painconcern.org.uk Pain
Concern, a self-help charity
11 - Help
the Shingles Support Society
The Shingles Support Society is a sub-group of the Herpes Viruses Association
(HVA) a registered charity, offering support to patients. It was set up
in response to a bequest received to help people with shingles and PHN.
As a voluntary organisation, we depend to a great extent 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
Bequests
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 he was very involved with to send the money raised when he died 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 PHN to everyone who needs it.
