Yes, CMT can have lots of secondary issues. My doctors have commented I have the worst case of carpel tunnel they've ever seen; I have hypoglycemia, auto-immune, anemia, asthma, Chronic Fatigue , Fibromyalgia and Sciatica.
The thing that I have found that helps it to manage your activity according to energy. I also have used my anti-depression med. to help me rest better as it puts a certain balance on your serotonin levels. Also I've used Melatonin to help as well. I also sit for about an hour or so then get up and move about doing a task then come back and sit again at the computer; managing my tasks between rests; the hard part is to stay motivated to get up and do something else. My motto is PACE Practicing Activity Considering Energy. Also, eating lots of small snacks rather than large meals as it seems I metabolize very slow; By being a " grazer" it allows the metabolism to work without over taxing my energy for other activities. Biggest lesson I learned with CMT is to be in tune and listen to your body!
Most of us do not realize how much energy it can take for our body to metabolize large amounts of food at one time; the other thing I do is eat yogurt which helps the digestion work better. We have goats, and goat milk also is helpful to digestion. Daily tasks have to be done but not finished all at once, I've learned to take breaks often, though prefer not to stop until complete; But, breaking into smaller tasks helps so I don't tire so quickly.
Glad you posed the question, as many have difficulty admitting that they get tired or have lost ability to keep up with what seemingly is small tasks but to us with our limitations they can be huge and we become overwhelmed and want to quit trying! I used to think I was just a wimp and "why" did things look so easy for others when I struggled to do even the smallest things. We all struggle and it helps to share that we are not alone in that struggle!
I just got some info from one of my good friends who holds an MD and a PhD, that in many cases of fatigue, there is dehydration, so perhaps an easy way for us to cut some of this from our lives is to simply drink more water. I know it sounds almost too easy, but who isn't thankful for something that is actually easy once in a blue moon?
Agreed SK; Great suggestion! I drink lots of water and always have but it is one thing more and more people don't even think of and it makes a huge difference! I drink water before a meal but not during a meal; actually dilutes the digestive juices so is not as good to drink anything with your meals; but, DO drink more water and any time I get a headache I think to drink water and allot of times it is my body reminding me I've gotten a bit dehydrated! Especially some meds dehydrate and dry us out so think about this little change SK suggests.
I too am tired all the time. It feels like I can NEVER get enough sleep. Then when I do go to bed I sleep for 2-3 hours and I will be up for around 3 hours in the middle of the night then go bed again. I take meds to help me sleep and I take plenty of pain meds that should help with sleep too bad they don't. I understand how each of you feel and I hope someday that we will all find a cure for our sleeplessness.
Fatigue??....2-3 years ago, I could do gardening work almost non-stop for 5-6 hours....Last year and this year esp., it's hard to get out of bed to do it.....When I do, it's about 20 minutes, and I'm sweating and exhausted.....From my failed back surgery, then the diagnosis of this, I developed depression....So, it's twice as hard now on top of that.....God Bless!
I sure relate to the depression; I go through bouts myself; because CMT is progressive, chronic and never going to improve and we suffer changes often and have to adjust our "normal" once again.
I get so tired way too quick; In my mind I can still accomplish but I must take breaks so often I'm lucky to get one task done that used to take me an hour tops, now takes all day and cannot do it to my standard I once had. I used to garden, do all the lawn work; cleaning my house thoroughly in one day; and now have to rotate the chores, one, one day, another the next by the time I get through the list it starts all over again.
I spend most of my day sitting now and never was a sedentary person but I'm learning to find new things to become useful again.
Actually moderating this group has enriched my feeling of productivity. I go out in public and sing to inspire others and to be able to talk about my disease. I used to go volunteer at the school, and talk to the kids about disability and the TOOLS to become able. (Wheelchairs, braces scooters etc. label or stereotype us as "crippled" but actually just b/c you are in use of a wheelchair doesn't mean in many cases you cannot walk, but you have a tool to make it easier, working smarter rather than harder, you can be out of your home and not be so fatigued or unsafe and possibly fall so we are fearful to continue to try to live. Be encouraged we all still have usefulness; we just have to find ways to be able and to participate in what we can at whatever level we can. Reaching out to others and feeling a shared burden can sure help that state of mind!
You sound just like I do now.....God bless you for getting some energy to go out of your home and find extra things to do.....You're right---I'm doing one thing in one day, and that's a big chore that I must split into segments, taking breaks in between continuing...This depression on top of it all has really blown me away....Talk about quacks?....Psychiatrists are merely 'dart throwers,' taking aim at the target and throwing(pills) hoping just to hit part of the target...They usually have one eye on their clock, while already writing prescriptions and maybe listening to you....I saw a few, and they ALL said I had something different, plus totally different meds....What a disgrace!....God bless you1
CM said:
Chuckk;
I sure relate to the depression; I go through bouts myself; because CMT is progressive, chronic and never going to improve and we suffer changes often and have to adjust our "normal" once again.
I get so tired way too quick; In my mind I can still accomplish but I must take breaks so often I'm lucky to get one task done that used to take me an hour tops, now takes all day and cannot do it to my standard I once had. I used to garden, do all the lawn work; cleaning my house thoroughly in one day; and now have to rotate the chores, one, one day, another the next by the time I get through the list it starts all over again.
I spend most of my day sitting now and never was a sedentary person but I'm learning to find new things to become useful again.
Actually moderating this group has enriched my feeling of productivity. I go out in public and sing to inspire others and to be able to talk about my disease. I used to go volunteer at the school, and talk to the kids about disability and the TOOLS to become able. (Wheelchairs, braces scooters etc. label or stereotype us as "crippled" but actually just b/c you are in use of a wheelchair doesn't mean in many cases you cannot walk, but you have a tool to make it easier, working smarter rather than harder, you can be out of your home and not be so fatigued or unsafe and possibly fall so we are fearful to continue to try to live. Be encouraged we all still have usefulness; we just have to find ways to be able and to participate in what we can at whatever level we can. Reaching out to others and feeling a shared burden can sure help that state of mind!