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Supporting people affected by Charcot-Marie-Tooth disease.

Pain

Many people with CMT experience pain at some point in their lives – sometimes briefly, sometimes long-term. Generally, experts believe the earlier you treat pain, the better.

Pain is a very personal experience. What causes your pain and how you feel it is likely to be different from the person next door. For example, evidence shows that women feel pain differently from men.

There are two types of pain that people with CMT might experience:

  • Pain due to tissue damage. It may be caused by stresses and strains on your body due to CMT, especially on the bones, joints, tendons and ligaments. This is called musculoskeletal pain, or sometimes mechanical pain. If, for example, you are walking with difficulty due to foot drop, you are likely to be putting extra pressure on other parts of your body.
  • Neuropathic pain, in other words pain caused by a problem with the nerves themselves.

However pain affects you it is important to remember that there are many different treatments available, including:

  • orthoses
  • re-training how you move with a physiotherapist
  • medication
  • specialist pain clinics

If you have lived with your pain for a long time you may find that various psychological, social and behavioural training methods and counselling can help you manage your pain and generally function better. Also, physical therapy and exercise can help control pain. For more on this, see Stretching, exercise and physiotherapy, p xx.

Drugs for pain

Everyone responds to drugs differently: if one doesn’t work, another may. Remember to take special care if you have another medical condition or take other drugs (including over-the-counter and complementary treatments). If in doubt, check with your GP or pharmacist.

Paracetamol
Paracetamol is very effective at relieving pain and is recommended as a first option pain relief, especially for musculoskeletal pain. It is cheap, easily available and gentle on your stomach. It is safe as long as you follow the directions on the packet but can seriously damage your liver if you take too many.

Non-steroidal anti-inflammatory drugs (NSAIDs)
NSAIDs, which include ibuprofen, reduce swelling (inflammation) and pain. There are many different brands, so if one does not suit you, talk to your doctor about trying another.

  • Taking NSAIDs regularly can irritate your stomach and cause problems like ulcers, especially if you are over 65 or take high doses. About one person in ten suffers these problems
  • Serious side effects can include stomach pain and bleeding. Talk to your doctor immediately if you have either of these
  • People with asthma, high blood pressure, stomach problems, kidney and heart failure may not be able to take them
Stronger painkillers

If paracetamol or NSAIDs do not work, stronger painkillers like codeine or tramadol, may be recommended. You may hear them called opiates, opioids or narcotic analgesics. They are sometimes combined with paracetamol.

  • Constipation is a common side effect of strong painkillers affecting up to half of people. Drinking plenty of water and eating foods with a high fibre content may prevent constipation
  • Some people suffer from drowsiness, nausea and vomiting
  • Opioids can be addictive so could give withdrawal symptoms when stopping. This is less likely with weaker opioids like codeine, but can still occur
  • Some people find that they have to take higher and higher doses of opiates to get the same level of pain relief, although ‘tolerance’ – as this is called – is not common

Anti-epilepsy drugs
Anti-epileptic drugs such as gabapentin and pregabalin are used for treating pain arising from some peripheral nerve disorders, either diseases or injuries. In most cases pain in CMT is due to mechanical problems. However in a sub-set of patients it will be neuropathic. Your neurologist can assess if the pain is likely to be neuropathic, in which case these drugs may be recommended.

Antidepressants
Certain antidepressants, in particular a type called tricyclic antidepressants (TCAs) can be extremely helpful in the management of long-term pain. They can give you a dry mouth and can make you drowsy, or constipated but these symptoms usually disappear after a short time.

Other treatments for pain

Other treatments that are most likely to help relieve pain include:

  • TENS machines (which block pain carrying nerve impulses)
  • acupuncture
  • osteopathy
  • massage
  • herbal remedies, such as devil’s claw or willow bark (the original source of aspirin)
Pain clinics

There are around 300 pain clinics in the UK. Most are in hospitals and have teams of staff from different medical areas, including occupational therapists, psychologists, doctors, nurses and physiotherapists. They all work together to help people with pain.

Pain clinics vary but usually offer a variety of treatments aimed at relieving long term pain, such as painkilling drugs; injections; hypnotherapy and acupuncture.

You will need to be referred to a pain clinic by your GP or hospital consultant.

You can find your nearest pain clinic by putting your postcode into http://www.nationalpainaudit.org/

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