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
Loss of balance and co-ordination
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:
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
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
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