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How To Lose Weight/exercise With Diffuse Sclero Attacking The Lungs


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#1 millerscrossing

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Posted 26 August 2007 - 02:55 PM

I just joined today and am grateful that I have done so - facing up to the fact that I have this disease is a big step for me.

My weight has skyrocketed from 227 pounds in December 06 to 307 pounds on Friday. But my steroids have come down from 60mg to 5mg

I have decided to go on a healthy diet- which is difficult - considering most of my day is spent indoors at a computer.

I have just moved to New York and conditions are muggy. I get out of breath very easily, take oxygen at night whilst I sleep, I have sleep apnea too....climbing the stairs I am out of breath..

So what exercises can I do without it completely killing me.....?!!!

Anyone else with lung related sclero know of a regimen that works despite the diffculty breathing ?

Bless this forum.....

#2 WestCoast1

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Posted 26 August 2007 - 03:52 PM

Hello MC,
I read your intro today and I am also glad that you have joined us. You mentioned that you used to swim quite a bit. I was thinking that you could do some light swim arobic excercises. This would get your heart rate up, but in a safe and controled way. Another idea is useing an excersise ball around the house. Of course you need some ballence to do this safely but you could use it at your desk while working on the computer. It will strengthen your core and get you ready for moderate exercises.

You must always ask your doctor if he approves of these activities before begining, but just a few ideas.
*WestCoast*

********

#3 peanut

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Posted 26 August 2007 - 04:04 PM

I use to just walk on the treadmill or elliptical for 20-30 mins. Nothing strenuous. Easy yoga and pilates are good. You could also get some light 3-5 lb hand weights.

Since I've been on oxygen it's hard for me to get out and with the 100+ heat I just haven't made it to the gym... terrible excuses... I know.

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 Clementine

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Posted 26 August 2007 - 04:04 PM

Hello!
I am sorry you have Scleroderma and especially sorry that it's getting your lungs.
I have interstital lung disease due to the scleroderma and am also on oxygen.

I know Erin suggested swimming. I would be concerned that you may need oxygen to exercise. I have to use it to exercise.

Perhaps you could start out with a short walk each day, and build up to two short walks. Walking is so good for us and low impact.

Losing weight is so hard. I just spent the weekend with a nutritionist and I am really motivated. I think we all know how to eat but it's so hard to apply it!
Take care and you are not alone.
Jennifer

#5 Shelley Ensz

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Posted 26 August 2007 - 06:06 PM

Hi MC,

Welcome to Sclero Forums, it's delightful to have you join us!

You'll need to consult your doctor for exercise advice.

An idea you might want to consider, for starters, is cranking up your oxygen a bit, setting a kitchen timer, and just walking around inside your place for a few minutes. That way you don't have to worry about outside air or anything strenuous, and it is simple enough to do even while the computer is booting up. Start with 1 minute at a moderate pace about 3 times a day, right before each main meal (while it is warming up.)

I also do stretches or a little walking in place while waiting for anything in the microwave, since I tend to just stand there and stare at it anyway.

Also, use the computer to your advantage by using online diet and exercise tracking software. There are many free programs or 30-day trials to use. Experiment until you find a plan that suits you and your lifestyle. Also you could order diet food/meals via the internet, to be delivered to your place if shopping/carrying groceries, etc. is problematic for you. By ordering healthy food and avoiding junk food (or eating out) even though it may seem like more money, it may actually save you a ton...of money and weight.

These things may not be enough to actually lose weight. I've tried a great many things but seldom lose more than a pound or two. However, I think the main advantage is that I am not gaining even more weight, as in, think where I'd be (a kazillion pounds?!) without making a consistent effort to improve my health.

Good luck to you and let us know if you find any ideas that work!


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 LisaBulman

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Posted 27 August 2007 - 01:52 AM

Hello MC,
Welcome to the Forums! I am glad that you have found us here but I am so sorry that you have been diagnosed with sclero and ILD. I have ILD too but I don't require oxygen yet. I have two young girls 9 and 7 so that is where most of my exercize comes in. A few years back I needed to loose some weight because I just felt awful. I tried one of the very popular mainstream diets and it worked. I lost about 20 lbs in 3 1/2 months. It was difficult in the beginning but once I got the hang of it, it really worked. Most people go to "the place" weekly to get weighed in but someone gave me all the stuff so I did it on my own. Since this summer started I have been sitting on my behind on the beach eating bags of snacks one after the other when I wasn't even hungry, I am going to start back up again on the diet. Healthy eating is hard to do, but so worth it. :)

Good Luck!

Hugs,
Lisa
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#7 epasen

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Posted 27 August 2007 - 06:25 AM

There are these "hydrobelts" what you can use while you're "running" in the water. I tried it few times last winter while I couldn't go jogging and it didn't make me out of breath, but It's still pretty good ecxercise, trust me. You should try it.

There is also some research which proves that "running in the water" with hydrobelt makes people lose weight more than normal jogging, or faster at least, even with slow tempos. Old grannys do that a lot, even that they seem to be just swimming with that belt carrying them a bit : D And it will be very fun if you have a friend with you.

#8 susie54

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Posted 27 August 2007 - 06:39 AM

Welcome and I think you have gotten some great advice here. I choose water as my best exercise. I use cuffs on the ankles to keep my weight of the ground in the water. The belt is also a way to do this. You can just jog in water and get a good workout. I do many different exercises and stretch alot in the water. Keeps me flexible. I hope you find a way. The eliptical is great at getting heart rate up quickly but I would find out if you need oxygen to exercise before you get into getting the heart rate way up there.
I have lost alot of weight in the past and have to work at it everyday. I know it can be soooo frustrating . Good luck with everything. Susie54

#9 Piper

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Posted 27 August 2007 - 12:17 PM

Hi James, Welcome to the forum! You'll get tons of helpful info and support here, they are all so great.
I also take a drug that makes me ravenous and I had gained weight. One thing that the druggist told me that was helpful was to eat something nutritious when I felt hungry like an apple or banana rather than cookies or chips. I also started on the 2 diet ( well I call it that) but it works like this. You eat 2 of everthing every day, 2 servings of meat, 2 of milk, 2 of fruit, 2 or more of vegetables, 2 breads, and 2 servings of fats (which includes peanut butter). I did loose weight and I try to stick to something similar now and I'm eating better than I ever have because I'm getting all the food groups in and omitting the junk.
Take care,
Hugs, Piper

#10 susie54

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Posted 27 August 2007 - 03:14 PM

Hey Piper,

This is interesting. How do you know what groups of food can you have two in? This one sound fascinating and easy to go by. SUsie54

#11 janey

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Posted 27 August 2007 - 04:08 PM

Lots of great ideas you've already received! I'm going to have to try some of them myself. I know how hard it is to loose weight - believe me. I've been fighting the weight battle all my life. since I was diagnosed, it's been an even yo-yo. I'm finally at a descent weight and am having to work really hard to keep it. I have found that the one thing that works the best for me is how I eat -I eat small portions about 4 times a day. It helps to keep my energy level up (for whatever level that is). I use to eat too much and was always miserable afterwards. Now I don't get that miserable feeling.

I do stroll about 0.5 miles (with my oxygen) about 3 times a week. How fast you walk at this point doesn't matter,as long as you are moving. Just moving around the house, it doesn't matter - just move.

Good luck Darlin'!

Big Hugs,
Janey Willis
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#12 Piper

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Posted 27 August 2007 - 04:26 PM

Hi Susie, I'm not sure what you mean but you can have 2 of the 5 food groups per day. I include starchy things like potatoes and corn in the bread section. In the fats I include salad dressing, peanut butter, butter or oil. In the milk I have either milk or yogurt( I love the activia vanilla flavor with some blueberries stirred in) or some cheese. I make a list in the morning of all the groups and when I have something I tick it off and then I know how many I have left.
Take care,
Hugs, Piper

#13 jefa

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Posted 27 August 2007 - 08:28 PM

Hi, all. Some good suggestions here, like Janey, I have found things work better for me with frequent small meals. It pays to keep snacks around which are in themselves part of a healthy diet rather than empty calories, so you can feel good about eating them. Susie and Piper, the "2" diet refers to 2 standard servings, not 2 items, so it ends up being a healthy overall diet with representatives from each of the food groups. Obviously this doesn't mean two breasts of chicken or 2 loaves of bread. :)
Warm wishes,
Jefa

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#14 susie54

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Posted 29 August 2007 - 01:14 AM

Thanks Piper,

I understand how it works now. Great diet and easy once you understand serving sizes. Might try this one and see how it works. I have a pretty standard diet regime but sometimes it is nice to shake it up. THanks and all of you had wonderful ideas. I know everyone will enjoy reading them. Susie54