With CMT the variations are endless. I know several individuals that have CMT that their symptoms are not nearly as severe as mine but I also know some that are worse. CMT is a progressive disease. And onset ages vary as well. Some people are not diagnosed until late in life as some are diagnosed early on. I myself was diagnosed at the age of 12. Pain symptoms I endure are:
Nerve Pain ( Burning – Stabbing feelings) in my hands, feet, and lower legs.
Misfiring nerves (Electric impulses) also in my hands, legs and feet.
Arthritis- (Old People Joint Pain)
Pressure – with CMT comes foot and hand deformities. Among them the fifth metatarsal bone protrudes out the side of each of my feet. It creates a quarter sized point that takes the majority of my weight with each step I take.
There is no cure for CMT. The only thing that can be done is attempt to keep pain under control. I where AFO’s (Ankle Braces) that are custom made to me that the attempt is to spread weight distribution in my feet. Along with support and stability. And then there is medications….. the jury is still out if pain medications are worth the hassle. a lot of times the side effects of the meds are worse then the pain itself. All nerve pain meds are sedative which means the main side effects is drowsiness and fatigue. Which for me makes things extremely difficult because i already battle extreme fatigue. And as a new father drowsiness is not my best friend so a medication that increases that is not an option. I am currently taking a muscle relaxer that helps frequency of misfiring nerves but doesn’t eliminate them or dull the intensity when they occur. I am also on a nerve pain mediation but this particular one causes drowsiness and on top of that doesn’t seem to be working with pain at all. Most likely will be discontinuing once I speak to my doctor regarding it. I was also gifted a few natural oils that help with nerve and arthritis pain. Most likely will be moving forward with these for the foreseeable future. Unfortunately my body is always changing and more muscles waste away further and further. So nothing comes as a long term fix, so for the most part its a grin and bare it ordeal. Today’s fix until tomorrows is discovered.