I have a few books I've acquired that were helpful to me when learning and trying to help myself understand CMT better. Do any of you have books or resources to recommend that has helped you? I especially recognized the affects diet has on CMT and the seemingly slow metabolism we tend to have. When early in my diagnosis, I read books on auto immune disease and the affects, and also MS is similar in symptoms and found books on those issues seemed to help identify some of the problems and causes. One huge change for me was not to take supplements in great quantities b/c my body tended to process slowly in concentrated forms, therefore it treated the supplements as toxins rather than benefit it caused my system to be more fatigued. I also grind my coffee beans fresh before brewing each time and do not reheat or allow coffee to cook down in the pot. This affects nerve mylein greatly. I learned both of those things from a book explaining MS. Let's hear some of the things that you learned and found helpful!
Since my symptoms are so mild l have not done a lot of reading or research on CMT. lnteresting about coffee though. Just the smell of coffee makes me ill. All the way to a full blown migraine sometimes. My hubby loves coffee and will drink a gallon a day if he could get away with it.
When fresh ground and brewed I can drink coffee all day and even into the night. No "shakes" or tremors. I sleep the same even after drinking coffee; actually can make me rest well ,having something warm and soothing before bed. But, the nerve myelin is damaged by anything that goes rancid, butter sitting out for room temp, oils that are not cold pressed, coffee ground and stored too long etc. Rancidity and processes are the biggest culprits to damaging our already compromised nerves. One huge caution, aspartame is very toxic to nerves! And, sorry to say, many doctors prescribe diet soda to diabetics instead of regular sodas with sugar! Neuropathy can be a result and even greater issues. Lost of limbs b/c of nerve damage. Educate yourself b/c as pointed out in other discussions, we are finding too many "so called" professionals do not have knowledge of our disease. I was given vitamin B shot that should have boosted my energy, but instead it fatigued my body to the point of being in bed, weak as a kitten for weeks.
So very true CM. l have gone to a proper foot specialist who prescribed a special compound of vitamins/minerals to aid in the repairing of nerves. She also got me a compounded cream that has gabapentin in it for nerve pain.
A gyno took out my appendix which has caused me lots of issues with toxins in my system. l am super sensitive to a lot of things, one being MSG. l try to avoid sugar of any kinds, but l am a professed carb freak. Try to eat only GF though.
Changing our diet,eating smaller quantities, but more often perhaps to give metabolism a chance to work without overload and doing things to aide digestion can be very helpful! I'm still learning diet alternatives to help my body and for things to function better. I was fortunate my parents raised me on healthy foods and informed choices. But, find out new things all the time that make a difference for me.
BTW tga we are not too far from each other geographically; if the opportunity arises I like to make an effort to meet all fellow CMT'rs if they are game! Just sayin.
Most definitely up for a meet and greet someday. lt would be a long drive for a day trip though. l have been trying to get to the DFW CMTA group meeting, just can't get there. lt's over 2 hours away for me. l don't travel as well as l used to. Bout time l started moving again. 3 years of not doing the things l used to is wearing on me a bit.
I have family in Dallas Texas and was thinking it might be a good stop off and take a break on one of our trips down that way to visit my family. I'll let you know when we might be doing that and see if it can be arranged! I understand about the travel, as went about 4 yrs without getting to see family after my parents passed away, I had some real bad issues most likely from the stress of it all; I wasn't able to go more than a 15 minute stretch in the car and even then limited to how many trips in a week or month I could handle. I'm back to being more able now but have to pick particular times and how I'm doing health and physically able to bounce back and depending on what else is scheduled as to whether I can convalesce to recuperate.
CMT is a constant weighing, balancing and checking balances!
Aspartame? This I did not know about. I am a avid diet soda drinker. I was reading about using vitamin c. Does anyone know about studies about this? The one article I did see was about children with early forms of CMT? I am new to all this and am trying to learn about CMT as I go along. My Dr. said I am her first CMT so we are learning together.