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Managing Pain

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Managing Pain

Psychology and Pain

Pain is a very personal experience.  What causes you pain and how you feel it is likely to be very different from the person next to you.  Evidence, for example, shows that women feel pain differently than men and that some drugs that work well for men do not benefit women as much.

It is not uncommon to find that people affected by CMT experience pain, to some degree, at some point in their life – sometimes briefly, but it can become a long-term problem.  Generally, pain experts believe the earlier you treat pain the better.

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

1          Neuropathic pain, which means that the pain is caused by a problem in the nervous system.  Neuropathic pain is often felt radiating from the spine into the legs and the arms (peripheral neuropathic pain) and often seems to have no particular cause, but this should not mean that doctors take your pain any less seriously.

Neuropathic Pain:

“pain initiated or caused by a primary lesion or dysfunction in the peripheral or central nervous system”

This results clinically in a complicated combination of symptoms which don’t appear to add up.  There can be both negative and positive sides to neuropathic pain:

Positive signs (excessive neural activity)

Increased sensitivity (touch becomes pain)

Disproportionate pain from painful stimuli

Pain continuing long after stimulus removed

Discolouration of affected skin

Nail changes in affected area

Negative signs (impaired or lost neural activity)

Numbness, lack of sensation


Reduced function


Loss of balance and co-ordination

Abnormal reflexes

2 Pain due to tissue damage.  It may be caused by stresses and strains on your body due to the CMT, especially the bones, joints, tendons and ligaments (may be called mechanical or nociceptive 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.

This can be categorised into two types:

Acute pain

This is pain of recent onset and probably limited duration

Arises from specific tissues, which can be traced

 Often time limited

Related to degree of damage / disease

Physiologically useful, in that it initiates escape / prevents further injury/  assists in healing by reducing stress / re-injury

Chronic pain

pain which persists beyond the normal expected healing time

May be difficult to identify specific source, as there could be many factors involved

Tends to spread

often serves little physiological purpose

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

Specialist equipment to give your limbs more support (known as orthoses)

Retraining how you move with a physiotherapist

Various drugs

Specialist pain clinics

If you have had your pain for a long time, you may find that various psychological, social and behavioural training methods and counselling could help you manage your pain and generally function better.

This "Pain Toolkit" might help get your pain under control.




Neuropathic Pain in Charcot-Marie-Tooth Disease
Gregory T Carter, MD, Mark l? Jensen, PhD, Bradley S. Galer, MD, George H. Kraft, MD, Linda D. Crabtree, LLD, Ruth M. Beardsley, BA, Richard T. Abresch, MS, Thomas D. Bird, MD



Date reviewed:   02/07/2013

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