Advice about pain, disability, etc...

January 12, 2011

Hello everyone,

I am 37 years old and have CMT3 (Dejerine Sottas syndrome the most severe form

of CMT), I was diagnosed at 18-months-old and have had progressive neuromuscular

deterioration throughout my teenage and early adulthood. I have been unable to

walk since I was 15 and in the past 5 years have had significant muscle wastage

and am now unable to use my arms and hands (I use my computer through dictation

software called Dragon NaturallySpeaking).

I have had scholiocis at age 15, and I now rely on a breathing machine (bi pap)

to assist with breathing at night while I sleep. Generally my peripheral nerves

are not communicating with my muscles and I am suffering from increasing

respiratory stress now as well.

Over the past 3 years I have developed neuropathic pain and I have tried Lyrica

and Neurontin as well as a number of other stronger drugs, however I have found

that the side-effects of these drugs including extreme fatigue/drowsiness and

inability to control my bladder meant that these drugs were not a suitable

option. Also I did not find the pain relief significantly beneficial.

From my experience the best pain management results I have had for the intense

neuropathic pain which I have in my right foot and leg (symptoms include extreme

electric shock/burning sensations which can also feel like my foot is in a vice

being twisted) has been a constant 3 to four hourly dose of Panadol Osteo which

was originally recommended for my osteoarthritis in my hip joint.

I take one tablet every 3 to four hourly and this controls the pain

significantly (although not totally). I still get occasional sharp spasms every

day, but these are momentary and quickly pass, whereas without the Panadol Osteo

the pain is frequent and longer lasting and I am often unable to sleep at all or

concentrate during the day.

I know that many CMT sufferers experience significant pain and it is always a

challenge to find a balance between the side-effects and pain management, but

for me Panadol Osteo has meant that I have no side-effects and am able to

function from day to day with manageable pain levels.

This may be an option for many of you guys to try, and although it sounds like a

simple remedy, it has taken me many months/years and a number of doctors

including my neurologist, physician and GP to finally settle on a drug which

from the outset is probably not the initial first choice for severe pain. My

advice though, after trying many of the stronger drugs, is to give it a go and

see if it works for you if pain is a problem.

Hope this helps. Keep me posted.

Regards

Therese (Brisbane, Australia)

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