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Re: Fatigue/Low Energy Levels/Recovery after exercise

Dear Zishan,
What helps my fatigue is rest...complete rest, sometimes for more than a day. I read, or play games on the computer, or catch up on emails, or zone out and watch TV (sometimes watching TV while playing a game). I take care to eat correctly while I rest, and I have learned not to let anyone or anything convince me that I should be doing anything other than resting. If I start to feel guilty and begin to think that I should be doing something besides resting, it will only cause me stress, which will make me even more tired! The key is to be comfortable with resting....to give oneself the "permission" to rest. There's an acceptance of limitations that has to occur.
Because of my age (60), taking Vitamin B12 has helped me too, but as Jan mentioned previously, that should be taken under doctor's care. I had an allergic reaction while taking 500 mcg of B12 everyday, so now I take it every other day, and that has definitely helped.
I am especially fatigued during the holiday season, and I want to do so much more than my body will allow, but that's when I need to "schedule" rest days the most. If I know I'm going to be doing a lot, I "schedule" rest days in between, and I remember the "reason for the season." Sometimes I can do a few things in the morning, and then I rest for the remainder of the day. I try to put something in the crockpot in the morning so it will cook all day, and then I don't have to worry about it in the evening when I am getting fatigued. When I cook, I double-up the recipe if possible and freeze some of it for quick future meals. I even just purchased a Foodsaver so I can seal meals in plastic without all the air. Crockpot meals can all usually be doubled.
Yesterday, for example, was a definite fatigue day. I wrote out Christmas cards all day and slept in between, and for dinner we had leftovers from the weekend.
My husband and I have learned that while we are on vacation, we must be careful to schedule days when we can just zone out in our timeshare. Timeshares have a bedroom, kitchen and living room and are very conducive to resting, just as one would do at home. We always bring a puzzle with us that we can put together on the kitchen table in our timeshare unit, and we bring a ton of videos with us to watch on the DVD player that is almost always provided. In between traveling, sightseeing, walking a lot and other activities while on vacation, we REST!
Even my husband sometimes forgets my limitations and will make suggestions or recommendations to me. Now I am very quick to remind him that it can take every ounce of my energy to clean the house, cook, do laundry, iron, do bills, food shop and keep up with our social calendar. It just proves to me that no one can fully comprehend Myotonia Congenita and its effects unless they have it.
All of this leads me to a suggestion for the forum:
that we share with each other the steps we have taken to make our lives easier, whether it's a way to set up our homes so that things are in easy reach or are easier to clean, or a lifestyle change, or a habit we have changed or developed, or some way we have discovered to give ourselves "permission" to rest!
Besides the doubling up of recipes as I mentioned above, I will share this tip:
I spray Arm & Hammer "Clean Shower" on surfaces after each shower I take. It almost completely eliminates the need to ever "scrub" the shower to remove soap scum and mineral buildup. Scrubbing REALLY weakens my arms and makes me tired. Sometimes my hand is too weak to even squeeze the trigger on the "Clean Shower" handle, but it still beats scrubbing!!
Okay...now I sound like a commercial....but it works!
Please share with me any tips you have to make life easier.
Happy holiday season, everyone, and remember....you are not alone in any of this.
Mary

Type of Myotonia: Thomsens

Country: USA

Re: Fatigue/Low Energy Levels/Recovery after exercise

Hi Mary:

I had to comment after reading your comment on how scrubbing fatigues you.

Though I do like to be active, I generally have the same problem when it comes to scrubbing thing like bathtubs and showers and the likes.

When I first got my car, years and years ago, the drivers side fender would always be much shinier than the rest of the car. The reason being, I'd wash the car on a regular basis and then resolve to wax it. I started with the driver's side fender and that's where I'd have to end :-)

Type of Myotonia: Becker

Re: Fatigue/Low Energy Levels/Recovery after exercise

Jenna,
That is so funny. I had the same problem with window washing. I'd start on the kitchen windows, gravitate to the living room windows, and never make it to the bedroom windows. I guess the solution is to "start" with the bedroom windows the next time....if I can remember to do that!
Mary

Type of Myotonia: Thomsens

Country: USA

Re: Fatigue/Low Energy Levels/Recovery after exercise

While reading your posts about window washing I remember how much I hated doing car washes for fundraisers in high school. There's something about that circular motion, whether it's washing windows or washing and waxing a car, that really taxes the muscles.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Re: Fatigue/Low Energy Levels/Recovery after exercise

Thanks guys. Im overwhelmed by the response and interesteing stories. I think i will see my GP about the vitamins and from January I will also try and take a lot of rest. Im having a har time this winter. It seems a lot colder dont you think?
Anyway il keep looking every few days and agree that we should try to help each other.

Type of Myotonia: Unknown

Country: England

Re: Fatigue/Low Energy Levels/Recovery after exercise

Careful not to rest too much though. I stopped going to the gym last year (after going for a few months) and two days ago I went to help move a shelf...I helped get it down a few steps on a dolly by making sure it didn't fall off, and picked up another 15lb dolly and moved it a few feet. It was really nothing but the next day my arms and hands were very sore and weak and I had the worst bout of myotonia in them that I've had for a while. Turning the car steering wheel felt like I was on the last few reps of something at the gym and I nearly flung a mug of water right out of the microwave because I didn't realize I wasn't going to be letting go quite so fast after I put it in.

I'm sure this would not have happened had I been working out on a regular basis.

Type of Myotonia: Becker

Re: Fatigue/Low Energy Levels/Recovery after exercise

Hi Z,
I have experienced similar fatigue and aches post exercise. I was still playing sport competitively until quite recently and hope to do so again but yes after training I was exhausted. Some days worse then others of course. On tegretol now but I hope that maybe through a good yoga regime and training I can overcome (at least to an extent) the motonia.
Good luck.

Type of Myotonia: Beckers (not certain)

Country: Ireland

Re: Fatigue/Low Energy Levels/Recovery after exercise

I am so relieved to hear about other people who are having similar issues. Since I also have some permanent muscle damage, I am very limited to the physical activity I can do. Walking for 15 minutes to 1/2 hour is about my maximum before I literally can not walk another step (Can you say inconvenient?)

My Neurologist suggested stretching excercises three times per day. (I always do at least two). This has helped considerably with the muscle cramping and stiffness.

I also plan ahead a great deal, it is simply a fact of life that my mobility is limited. We are going on a cruise soon, and have a scooter rented to take me to and from my cabin. Then I can use my cane or my husband to lean on once I get where I am going. I was extremely resistant to using a cane at 53, but when I finally did start using it on bad days, I found that I could go farther, for longer periods of time, and Much Faster! People in back of me everywhere appreciate that!

Thanks for the suggestions everyone, please keep them coming. MC is a lot like running a car on a quarter tank of gas and trying to go the same distance that someone with a full tank of gas goes.

Happy New Year everyone.

Type of Myotonia: MC with permanent muscle damage and atrophy

Country: USA