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how do you burn calories/when exercise intolorant??

Posted: January 29th 2009

lorimar

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hi  it's Lori, I get terrible, terrible pain, with the least bit of exercise. I don't want to become a couch potatoe.  What do all of you do for exercise.  I march in place, When I'm watching T.V.  Then I'm up alnight in pain.  I've tryed everything and can't find that balance..............thank-you...Lori:)
cellolover's picture

I would like input on this

Submitted by cellolover on Thu, 01/29/2009 - 8:29pm.

I would like input on this subject too. I don't deal with pain as much, but the least bit of exercise and I'm completely wiped out for the day. Plus, with walking my legs give out after a few seconds.
__________________

Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.

lorimar's picture

hi, maybe together, we can

Submitted by lorimar on Sat, 01/31/2009 - 2:20pm.

hi, maybe together, we can figure out that balance,My legs get that weak rubbery feeling, and give out too.For the fatigue, I bet you have plenty of that. For fatigue, my husband had a great idea. He said to pretend you have money (the amount depends on how you feel, when you start the day). Then any time you exert energy your spending money. The tricky part is not to go broke at the end of the day. I'm usually busted:)

Hello Lori & Raechel, I am

Submitted by janice on Mon, 02/02/2009 - 4:18pm.

Hello Lori & Raechel, I am in the same boat. I have only had success with swimming & water mobility excercises. The key is that the pool temp. is warm, otherwise my muscles are not happy with me and let me know it! It's a slow process, started w/ one (slow) lap, before pain was too much. Am now up to 7(slow) laps, before the pain is too much. The pain will always be there they say, but is stretching the lenghth of time before pain is too much to handle. (For me, it's more about keeping myself mobile) I like your husbands idea, although I don't think I would like to go broke every day! I use the same method, only it's spoons.(you start w/ 12 spoons) It is far easier to tell a friend that you are simply out of spoons for the day or need to use them on something else later that day, than to try to explain "why" you choose not to do something with them at that time. -----TIRED OF COOKING ALL THE TIME? * I have recently started making some of my dinners; for 6. ( There is only my husband and I here, and thank goodness he likes leftovers!)It's really not much more work, and I freeze the other 4, for his lunches or a time when I have no spoons left to cook dinner.It's amazing at how much energy you can save this way! Enough rambling, hope all are having the best day they can! jan
cellolover's picture

Swimming laps was the last

Submitted by cellolover on Tue, 02/03/2009 - 8:18pm.

Swimming laps was the last exercise I could do fairly well. I quit because it was wiping me out too much. Recently I have been wondering how much of that was because the pool was really cold. Hmm, maybe I'll try that again! On a different note, I recently switched from trying to do about 15 min. of stretching and strengthening a day (which wasn't working) to doing 3 min. at a time. I haven't done this long enough to be sure, but I think this is a better way for me to go. Today I have been able to do four 3 min. segments! I'll let you know if it turns out I'm just having a good day today and the short exercising doesn't make any difference!
__________________

Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.

lorimar's picture

I think your idea is

Submitted by lorimar on Wed, 02/04/2009 - 5:16pm.

I think your idea is great,Rachel, I'm going to try it too; last time I was at Mito Doctor she said to give stretching a try. Keep me posted Good Luck....and keep smiling. The cold even bothers me when I horse back ride.I rode the other night, and as much as I love riding, it wasn't worth all that pain, it was a cold night.No more cold rides for me. They told me to try crunches, to strengthen my core muscles,because I collapse when I ride. I laughed, but I'm going to try it, I always go for broke;It's not good to do though.Janice, that idea of making extra meals is worth a try too!Nice talking to you...Keep on hoping....Lori:)

Hello! Wow, you ladies are

Submitted by Patti on Thu, 02/05/2009 - 12:29am.

Hello! Wow, you ladies are all describing what happens to me! My legs go weak too and do what I call the noodle leg. One minute I'm walking fine and then the next, I wobble, stumble and even fall on occasion. Some people look at me like they think I am drunk or something. And the whole exercise thing I have trouble with, I try to walk but am wore out within a block. When I go to stores I always make sure I have a shopping cart otherwise I would never make it around the store. It's sort of like a walker. I get so frustrated!!! I know that I need to loose weight and keep moving, but what do you do when you wear out so quickly? Just trying to make it through 8 hours of work five days a week is like running a triathalon!! Thanks for the ideas thus far, anybody have any more?

lorimar's picture

Patti, funny you should say

Submitted by lorimar on Thu, 02/05/2009 - 3:21pm.

Patti, funny you should say that, even walking in the house I walk like a drunk, my legs feel so much like rubber, at the end of the day, I fall. Once I had to crawl to bed How scared was I! I was home alone. I'm also paralyzed on one side so my right leg does most of the work, which makes it tire even faster.I'm afraid sometimes, what the future holds, but happy in knowing who holds it.....So lets keep the Hope! God Bless....Lori:)Thanks so much, for everyone's input:)
cellolover's picture

Reading the comments is like

Submitted by cellolover on Fri, 02/06/2009 - 10:57am.

Reading the comments is like reading about myself! I too sometimes fall and have on more than one occasion crawled or dragged myself somewhere. Lori, I have programmed the speed dial on my cellphone for a few key peoples numbers. I try to keep it with me all the time so that if I need help all I have to do is press one button. Sometimes I have called someone in the kitchen asking for a snack! But it works for serious matters too. Of course, I don't have all the same symptoms as you. We want to be able to move so much, but I have found that in this busy world people really appreciate a person who will sit quietly and listen to them. This I recall to my mind, therefore I have hope. The Lord's lovingkindnesses indeed never cease, for His compassions never fail. They are new every morning; great is Your faithfulness.
__________________

Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.

cellolover's picture

Oh, I forgot what I was

Submitted by cellolover on Fri, 02/06/2009 - 11:05am.

Oh, I forgot what I was originally going to write! I was talking to my family doctor about exercising. She agreed with doing little segments at a time and not doing more than a few seconds work on a single muscle at a time. She also pointed out that a normal person who hadn't been able to move much for a long time would get worn out and sore very easily. Of course I'm not particularly normal. :) Just made me realize again how pushing until I break is not the best way to exercise! I hope you ladies are having a lovely day!
__________________

Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.

lorimar's picture

You Sure are Normal! God

Submitted by lorimar on Sun, 02/08/2009 - 3:44pm.

You Sure are Normal! God doesn't make mistakes.We are all,contributing something to this crazy world.Thank-you, so much for your idea, about the phone, Wow, I used to do that,but once I was in the back yard, fell on the ice. The phone slid and I couldn't reach it, my dog was wondering why I was lying on the ground? I've since trained him to pick things up for me,now he gets carried away. He likes getting paid(food)He's a lab,they love food. We now have a pup hoping she learns from him.I broke the back off the phone that day, and never fixed it. But now that you reminded me about it, I'll sure do it again. Thank-You........................Keep Smiling...Keep in touch.....Lori:)
beck7422's picture

I don't swim or take baths

Submitted by beck7422 on Sat, 03/07/2009 - 9:23pm.

I don't swim or take baths anymore. Too many times of almost drowning after trying to exit the pool, Jacquzi, and bath. I stand up to get up or get partially up a ladder, turn into a wet noodle, and then flow back into the water sinking like a stone. Had to get rescued too many times. That was 4 years ago when I was in BETTER shape. On exercise. I find that light exercises that use my entire body simultaneously that are constantly varying are the easiest to sustain with the least amount of energy drain.

That doesn't sound like

Submitted by janice on Sun, 03/08/2009 - 1:26pm.

That doesn't sound like much fun!Do you know if it is related to " Autonomic dysregulation"?.... Vascular dysautonomia , can alter heart rate and blood pressure. It can occur with orthostatic changes in position, or after excercising too much,extreme temperatures or for no apparent reason. It sounds like you have trouble when you stand or after exercise? just food for thought. I have found that if you print off the "physicians Mito manual" from this web site, you can find answers to 99% of our questions.Also when we chat on here, you realize your not the only one with this "peculiar" body.* What i thought was muscle pain all these years turned out to be a neuro cause of it. I was put on Gabapentin for the neuropathic pain and i felt like i was 20 again, only to gain 40 lb.s in 8 weeks and chose to stopped it. Were you given a Mitochondrial Myopothy exercise guide? It explains what to do, how to do it, for how long and why.I just looked on the back of mine and it is from the mito clinic in Vancouver,B.C. If you don't have any info available, i will gladly copy and send.
beck7422's picture

I got a note from my doctor

Submitted by beck7422 on Sun, 03/08/2009 - 3:41pm.

I got a note from my doctor saying suspected Complex 1 and the meds to try. Nothing else. Trying to get daily functioning advice is difficult. Whenever I go out of my way to get this advice, I am usually the one training the Occupational Therapist or Physical Therapist. I even once went to a Pain management specialist and taught him stuff he didn't know. Sigh.
beck7422's picture

Please send me management

Submitted by beck7422 on Sun, 03/08/2009 - 3:42pm.

Please send me management info. I could use the help.
cellolover's picture

Janice, could you send me

Submitted by cellolover on Sun, 03/08/2009 - 3:53pm.

Janice, could you send me the exersice guide too? Right now I'm figuring this stuff out by trial and error. I wouldn't mind skipping some of the error! I'm also going to check out the physicians mito manual much more carefully. Thanks!
__________________

Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.

I would be glad to send it.

Submitted by janice on Sun, 03/08/2009 - 5:04pm.

I would be glad to send it. It is 43 pages, so let me figure out the best way.(maybe photocopy and mail)you can e-mail me with your address' through the contact in "users profile". I have 30 years experience with the trials and errors of living with mito, and am now with the help of my G.P. are figuring alot of it out.( you have to do the research of how it affects you,and take it to him,discuss it and he orders the tests to prove or rule out something.) You girls remind me of me, 20 years ago.So if you would like me to share some Mito experiences,and the things i find work and those that make it worse. I would be happy to share, as i know your frustration!...and yes, even in 2009, mito patients have to educate thier physicians. Sad.... I found forgiveness,when i learned that it wasn't even in the medical books yet, so how could they know?