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Myositis Support Group

DM and Diet

#1

Has anyone noticed a change in your symptoms when changing your diet habits? I've tried here and there, but nothing long enough to tell.

I'm so fatigued all of the time, and I have added exercise, fruits and vegetables into my life but the fatigue is even worse.

Maybe more food and water intake is necessary when dieting, I know I've not had enough water.

Thoughts?

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#2

I’m sorry you are having trouble with fatigue, Nichole. I read the notes from a myositis support group meeting that said a frequent concern of members was a worry they might fall asleep at an event or gathering. I’m not sure what can help the most, but I hope our members have some ideas. Is green tea a possibility for when you need to get going? It is anti-inflammatory.

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#3

I do have some green tea on hand, I'm not a tea drinker, but it's worth a try!

I have an appointment with a pulmonary specialist too. I had part one of a sleep study in 2010 (two years before diagnosis), so I'm in need of getting back for a whole new study. I sleep horribly at night.

Getting that under control could help a lot. I fall asleep while driving, while talking to people, all of the time. It' pretty bad.

Thanks for the tea idea! Hope you are well!

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#4

You might want to take a peek at the narcolepsy network, where there was a recent thread about things to do to increase wakefulness in the daytime and sleep at nighttime. The link is on the right hand side of the page here.

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#5

Hi!

I have recently been learning a little more about autoimmune diseases and diet in general and have found a few great bloggers, books and blogs! Apparently the Paleo diet is good for autoimmune diseases, too.

Here is a list of great auto-immune/foodie bloggers:
http://paleomagonline.com/introducing-the-paleo-autoimmune-bloggers/

This gal and her cookbook... and blog, and fb page are amazing! I have quite a few friends who eat Paleo and they love the recipes, so it's in my shopping cart!
http://www.amazon.com/gp/product/1936608367/ref=ox_sc_sfl_title_2?ie=UTF8&psc=1&smid=ATVPDKIKX0DER

I have Fibro too, and holy moly do foods trigger those flares. Sugar and booze are the worst, so I have learned to be careful not to overindulge.

Let me know what you guys think!
M

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#6

I believe a diet of cream cakes, nice greasy chips and pie is in order Nicole. If nothing else it'll cheer you up for about 10 minutes before the guilt sets in.

But seriously, have you gone gluten free yet? It helped me with issues like IBS (I mean it literally cured me of IBS after 10 years of it) and Im convinced that if I wasn't gluten free already the DM would've been worse. I was staunch gluten free for a year - no gluten whatsoever, but now I have a bit here and there, now and again. Also though, I've been a vegetarian for 32 years, and did the paleo diet, just before I got DM so not sure if it helps or not, again, maybe if I hadn't of been eating well and lots of veggies, etc. I might have ended up worse, who knows. One thing though, having a good diet doesn't make things worse.

Good luck with trying out some things (oh and junk the sugar if you can, or reduce it to a minimum if you can at least)

(after all that I really need a big fat chocolate bar, but I will resist, I promise)

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#7


Hey, you can bad talk the pies and the chips all you want, as long as you don't drag my buddies chocolate and soda into it! You're right though. It's temporary fulfillment. I have very little will power, so I have not tried gluten free or paleo, but have heard great things.

I've recently met a friend who follows a pretty healthy regimen and she's helping me learn some different things. She brought over some cauliflower soup today and some chia seed jam (both are in the refrigerator, the jam I'm excited for, the soup, I'm not so much.

I'm glad to here that diet has helped you! It makes me think that it's worth a shot. I will be juicing a lot more than I do and maybe look into that gluten free business…

(Put the chocolate bar down!) No, I'm talking to myself, I know you never picked one up ;-)

suzedablooze said:

I believe a diet of cream cakes, nice greasy chips and pie is in order Nicole. If nothing else it'll cheer you up for about 10 minutes before the guilt sets in.

But seriously, have you gone gluten free yet? It helped me with issues like IBS (I mean it literally cured me of IBS after 10 years of it) and Im convinced that if I wasn't gluten free already the DM would've been worse. I was staunch gluten free for a year - no gluten whatsoever, but now I have a bit here and there, now and again. Also though, I've been a vegetarian for 32 years, and did the paleo diet, just before I got DM so not sure if it helps or not, again, maybe if I hadn't of been eating well and lots of veggies, etc. I might have ended up worse, who knows. One thing though, having a good diet doesn't make things worse.

Good luck with trying out some things (oh and junk the sugar if you can, or reduce it to a minimum if you can at least)

(after all that I really need a big fat chocolate bar, but I will resist, I promise)

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#8

Thanks for the links!!

Maren Holzinger said:

Hi!

I have recently been learning a little more about autoimmune diseases and diet in general and have found a few great bloggers, books and blogs! Apparently the Paleo diet is good for autoimmune diseases, too.

Here is a list of great auto-immune/foodie bloggers:
http://paleomagonline.com/introducing-the-paleo-autoimmune-bloggers/

This gal and her cookbook... and blog, and fb page are amazing! I have quite a few friends who eat Paleo and they love the recipes, so it's in my shopping cart!
http://www.amazon.com/gp/product/1936608367/ref=ox_sc_sfl_title_2?i...

I have Fibro too, and holy moly do foods trigger those flares. Sugar and booze are the worst, so I have learned to be careful not to overindulge.

Let me know what you guys think!
M

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#9

I had cauliflower soup for my lunch today coincidentally. It was spicy. Very nice indeed. I make a mean soup. I should put some recipes up actually. Have a go at gluten free Nicole. It’s really not that hard once you get into it. Xxxx

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#10

What were the chances that you were having cauliflower soup today? I haven't tried hers yet, a little nervous since I'm not a soup eater…

If you want to share some recipes, that would be great!

Talk soon!

Nichole


suzedablooze said:

I had cauliflower soup for my lunch today coincidentally. It was spicy. Very nice indeed. I make a mean soup. I should put some recipes up actually. Have a go at gluten free Nicole. It's really not that hard once you get into it. Xxxx
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#11

I'll put the recipe for lentil and sweet potato soup up later (IM supposed to be working now!!) its really delicious and hearty - although not really paleo, but vegetarian and low calorie and no gluten!

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#12

Can't go wrong with sweet potatoes!! Work is SO over rated!!

suzedablooze said:

I'll put the recipe for lentil and sweet potato soup up later (IM supposed to be working now!!) its really delicious and hearty - although not really paleo, but vegetarian and low calorie and no gluten!

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