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:
However pain affects you it is important to remember that there are many different treatments available, including:
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.
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 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.
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.
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.
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 that are most likely to help relieve pain include:
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/