Re: hurting and tired

[Guest guest]

,

I am drinking whey protein and wow what a difference it has made in my

energy level. It took about a week and a half for it to really kick in. I love

having energy. I was only good for a few hours in the morning before I felt dead

tired.

I also take citicoline and from time to time I take vitamin c. I think they both

help with circulation and that helps with pain.

I was watching Dr. OZ and he said Ribose is what he suggests people with really

low energy to take. I haven't tried it yet but I may if the protein energy wears

off.

[Guest guest]

,

I have a thyroid condition (hypothyroid) that makes me really tired. Have you

had your blood tested for a thyroid condition? I don't think your level of

fatigue is normal CMT or not. I hope it's something easy to fix.

[Guest guest]

,

Pain and fatigue hit us all with CMT differently. I suggest you check

in with your neurologist for starters. Going back to work and money

worries may have created an underlying stress that is exacerbating CMT

symptoms. Not to mention that the holidays in general are stressful for

everyone, CMT or not!

You might want to look through our Files section on Pain and Fatigue.

Gretchen

[Guest guest]

Hi ,

Your story sounds a lot like mine.  I was also diagnosed at age 5 and the last

few years have been very painful for me and I take a lot of pain medicine but

nothing helps that much.  I also work in an office environment and have a good

career and can't afford to go on SSD even if I did qualify. 

For me if I stayed home and didn't work I would perseverate on the pain more and

I do believe staying on your feet and moving around in short distances

throughout the day is actually healthy and work is good for the body and mind. 

Of course too much of anything is not good. 

The weather maybe impacting on our pain.  The cold for me makes my body stiffen

up which causes great pain. I only starting having pain a few years ago.  I am

not a doctor but what works for me is Neurontin, Cymbalta, and Ultram CR.  Also

I go to aquatic therapy and the water is 100 degrees and is soothing and helps

the tense muscles.  I wish you the best of luck...

Andy

[Guest guest]

Hi ,

 

As Gretchen said, we are all different.  This is true even within the family.  I

have a high level of pain, but other CMT family members have no pain, so

unfortunately it's not very helpful to compare ourselves to others, even our own

family members, to determine what is CMT related.  What you describe is not

uncommon among those with CMT.  You said, " I just thought I had pushed the

limits, and my body was pushing back. "   My guess is that your instinct is

correct, but it's a good idea to see your PCP and get checked out for other

issues, i.e. anemia, thyroid, etc.  If you are unable to continue working due to

CMT, perhaps disability may be an option to help your family financially.

 

  

 

[Guest guest]

Thanks, I will look in the files, and hopefully find what I need to get Mom and

Dad off my back. CMT is hard enough to deal with without your own family being

in denial. Dad says I should not be hurting because he doesn't nor any of his

family who has CMT. They want me to see another doctor (internist). I am

afraid he will not know anything about CMT and put me through a bunch of tests I

don't need.

I did go to my MDA neurologist last week. She is having me try some different

meds. You are right, stress is probably a big factor. I have been trying to

care for my Mom taking her back and forth to the doctor & hospital, as she was

diagnosed with breast cancer in February of this year, then having money

problems, trying to work after being on disability for 7 years, being informed

by SSI that I had been over paid by $4,000. and demanding repay when I do not

even have enough money to pay the other bills I have. That is why I had to try

to work again.

On top of that my daughter and my two grand children moving in with us because

her husband is off working in west Texas. I love having them here it is just I

am so tired and hurt.

[Guest guest]

Hi ,

Besides agreeing with what people said about how some have CMT pain

and some don't (even with the same family), we all have different

tolerance to pain. Part of that is how well our brain chemicals kick

in and part of it is just plain tolerance. Your pain defenses may not

have kicked back in to full gear,

You didn't say what meds the MD doctor prescribed. Pain meds can be a

big cause of fatigue and sleepiness. If you are willing to share what

you take, people can respond.

It might be just that you pushed the limits, but if you are more

active now that you are working it may be just that it takes us longer

to get back into shape. PT might help if you can get it in when you

aren't too tired from work.

Stay in touch with the doc, though, and make sure s/he rules out other

causes. You'll hear many stories here of docs writing off every

symptom to CMT. They said my mom's fatigue and even labored breathing

was CMT until they found her Congestive Heart Failure.

[Guest guest]

Thanks Amy, I truly appreciate your concern and reply. It some how makes us

feel better to know we are not alone. I hope all goes well with the consult

Friday. I live about 100 miles east of DFW. That's neat huh?

[Guest guest]

Hi Amy,

 

I'm very interested in hearing what you find out as well.

 

It's my understanding that Cliff Sheats' diet book, " Lean Bodies " , is very

similar to a diet book that my husband really likes called " Burn the Fat, Feed

the Muscle " by Tom Venuto.  I say 'diet' book, but they are really 'lifestyle'

books because they emphasis exercise and proper nutrition.  Tom Venuto is a

bodybuilder.  He presents some great concepts for losing body fat as well as

combining food to maintain blood sugar levels and reducing hunger.

 

If anyone is interested in buying either of these books, you may want to check

out the reduced prices available on half.com and amazon.com (click on other

new/used button).  The books can be purchased for just a couple of dollars, plus

shipping.

 

But...be careful with regard to all the supplements and programs that they

sell.  Neither of these guys are medical doctors.  It's a good idea to check

with your medical doctor(s) before beginning any of the supplements.  Also check

the supplements against the CMTA medication alert list.

 

Also...I personally think it's a good idea to read negative reviews as well as

positive reviews, to get a balanced view before beginning any program.  There

may be ways to accomplish something similar without a big outlay of cash.  JMHO.

 

Amazon has lots of reviews.  Also, this is an interesting read...

 

" LEAN BODIES " HIDE SKELETONS, By Tim Gorski, M.D.

http://www.ntskeptics.org/1993/1993july/july1993.htm

http://www.ntskeptics.org/1993/1993september/september1993.htm

Also, if anyone decides to follow the diet program, my husband created a

worksheet to help him keep track of the carbs/fat/protein for each meal.  It's

in Excel and requires manual entry of all of your food items, so it requires

some skill to use, but he's willing to share it, if it could be of help to any

of my CMT friends.  Just email me privately.