By Patricia Le Gallez, RGN MPhil

Introduction

Pain links with depression in a vicious circle. In order to control pain it is essential to break the cycle as quickly as possible, that is BEFORE pain leads to tension and depression inter-linked with anxiety.

While various methods of pain control are available, what is suggested here is that once the correct method of taking drugs which control pain has been mastered, then alternative methods of pain control can be incorporated with each person choosing the method which suits them best.

First of all a word about the usual situation when a painkiller is prescribed. As a rule the advice to the patient is to take the tablet only 'as required' rather than on a regular basis. As a result of this advice, many people choose not to take the painkillers. They do so because they are already taking many tablets, or because they simply dislike taking drugs. Then, when the pain has reached a degree of great severity, in desperation they take I or 2 painkillers and are surprised when they do not work. They expect a mild painkiller to control very severe pain which, in this situation it cannot do. As this is not the most satisfactory way to control pain they quickly become discouraged and stop taking the painkiller, describing it as useless.

Drugs Prescribed To Control Pain

The two groups of drugs most commonly prescribed to someone suffering from the Ehlers-Danlos Syndrome are:

Analgesics - this is the medical term for a 'painkiller' and examples of these are aspirin, paracetamol, codeine, co-codamol, co-dydramol, dihydrocodeine, co-proxamol, Tylex, etc. Many of these also have brand names.

These drugs, with the exception of aspirin, are painkillers ONLY and have no anti-inflammatory action. Painkillers are usually prescribed to be taken 'as required' and within a maximum dose of 6 or 8 in 24 hours, depending upon the drug involved. Except for aspirin, they can be taken at any time of the day or night, with food or without food, and at the same time as most other drugs. Aspirin, because of the gastric side effects which can occur, is the least favoured of the analgesics and should always be taken with food. These drugs are not dangerous or habit forming PROVIDING the maximum dose is not exceeded.

Non-Steroidal Anti-inflammatory Drugs (NSAID's) - Because of their name these drugs are sometimes confused with 'steroids' which they are not. In fact, steroids are very rarely prescribed for someone with Ehlers-Danlos Syndrome. There are approximately twenty five NSAID's on the market, examples are ibuprofen (Brufen), indomethicin, (Indocid), diclofenac (Voltarol), piroxicam (Feldene), naproxen (Naprosyn), and many others.

These drugs are supplied in various ways, including slow-release preparations, these are usually taken only once a day often last thing at night, or as suppositories which are used once a day also last thing at night, and more recently as gels or foams which are applied directly to the painful area, up to 3 or 4 times a day. NSAID's act as PAINKILLERS and they also act by RELIEVING INFLAMMATION. In addition, in order to avoid the gastric side effects which can occur, NSAID's should NEVER be taken on an empty stomach, they should always be taken with food. If other side effects such as headaches or skin rash occur, then the drug in question must be stopped and an alternative NSAID prescribed.

Pain Control Using Painkillers (Analgesics) And NSAID's

Usually taking a NSAID plus the occasional painkiller will be sufficient to control pain but, sometimes, pain manages to break through and appears out of control. As a result many people have felt confused and uncertain as to what action to take.

The key factor in controlling acute or chronic pain is to act quickly, and not wait until the situation is out of hand. In this way the person concerned will be in control, rather than the pain controlling them. As soon as you are aware of your pain worsening beyond mild to moderate, try the following guidelines and see if you cannot gain better control of your pain.

If you have not been taking the maximum dose of the NSAID prescribed for you, increase this immediately. IN ADDITION TO THE NSAID, take two painkillers and repeat every 3-4 hours, remember do not exceed the maximum dose in 24 hours. By doing this the painkiller will build up within your body until a steady concentration is reached and pain is brought under control. You may need to continue doing this for as little as a few days or for as long as two weeks and, in some instances, even longer. Eventually, as you gain control of your pain you will be able to reduce the painkillers. Do this cautiously and do not be afraid of returning back to the full dose if your pain dictates that you do so.

For some people, following these guidelines will not result in the desired effect and pain will continue, in which case a change in painkiller may be required. Tell your doctor that you have tried the above regimen without success and a different painkiller can then be prescribed.

Anti-Depressants

Anti-depressants are occasionally prescribed to help people break the stress-pain depression cycle. The dose is smaller than required to treat depression itself and when taken at night can help to induce sleep.

Additional Methods Of Pain Control

In conjunction with the above guidelines, any or all of the following additional methods can also be used:

Application of heat or cold

Apply either a hot electric pad or a well protected hot water bottle to any painful area and leave in position until the pain is eased. Some people prefer to apply a cold compress and the easiest one to apply is a well protected pack of frozen peas. You can now buy a proprietary product called a Hot/Cold Pack, which can be placed in the freezer or microwave depending on your preference. Neither heat or cold will cure pain but they will help to subdue it and particularly so when used in conjunction with a painkiller. A warm bath or shower will have a similar but more widespread effect.

Massage

The laying on of hands to heal pain goes back to biblical times and, indeed, is one of the most potent forms of pain relief. If you have a willing partner, relative or friend, then allow him/her to massage GENTLY the painful area using a non greasy oil as a medium. Never try to massage without using a medium, otherwise the skin will be stretched and possibly broken. Even a few minutes massage can prove most beneficial.

Relaxation

When someone is in pain, relaxation is the most difficult state to achieve but it is not impossible. Many relaxation tapes are available, though before using them it is worth noting that relaxation is something that needs to be learned - it does not occur automatically when the tape is switched on. Most people find it easier to learn to relax in a group, rather than alone.

Diversion

Another form of pain control is diversion therapy, so try and engross yourself in a favourite hobby. Many pastimes can be achieved with considerable success, eg embroidery, sewing, painting, jigsaws etc. These pastimes are found to be equally suitable to both sexes. Try also to maintain an active social life. Quite often good company can very successfully divert thoughts away from pain.

Overcoming Sexual Difficulties

It takes little imagination to appreciate that sexual problems can arise when painful, stiff, unstable, and perhaps deformed joints have developed, regardless of whether the person is male or female. The very act of making love can be extremely physical and damaged painful joints may not respond as the couple would wish. Providing any sexual problems are due to mechanical defects and are not psychosexual, the following advice may help.

a. Why wait until night-time? Take advantage of what ever time of day your pain and stiffness is least. This may be all you need to do.

b. Take your painkillers 30 minutes before sex.

c. Have a warm bath or shower first, together with your partner, if you wish.

d. Rest in the room you intend to use. Arrange pillows to support vulnerable joints.

e. Turn on your relaxation tape or favourite music.

f. Using a body oil, your partner can gently massage any painful areas.

j. Enjoy yourselves.

Pain Associated With Work

For many people going to work acts as a form of diversion, which results in a reduction in pain. In addition, a feeling of satisfaction and personal achievement can ensue though they may feel exhausted at the end of each day. This of course is where massage or relaxation or further diversion through hobbies should be applied.

Summary

Even though your pain may at times feel extremely bad and out of control, providing you follow all or some of these suggestions a reduction in pain, if not total alleviation, should be achieved.

REMEMBER, if pain seems to be increasing, DO NOT WAIT HOPING IT WILL GO AWAY, act immediately and gain control for your self.

The views expressed are those of the author(s) and should not be construed to represent the opinions or policy of the Ehlers-Danlos Support Group or it's Trustees.

MEDICAL ADVISORY PANEL

Prof P Beighton MD PhD FRCP DCH, Prof H A Bird MD FRCP, Prof R Grahame MD FRCP FACP, Dr D Merrild MD MPH,

Dr N Burrows MD MRCP, Mr A P Barabas MD FRCS, Mr A I Attwood MB BS FRCS (Edin), Prof F M Pope MD FRCP