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#1 miocean

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Posted 10 January 2010 - 05:35 AM

I have always had problems with my weight being overweight since I was a child. There were times in my adult life when I lost weight but only due to dieting and lots of exercise. My weight would constantly fluctuate and I tried every diet in the book. When I got scleroderma I spent a month in the hospital and lost 30 pounds. I started dialysis and the renal diet which includes a lot of protein, more than I can eat. Little by little I gained weight. After five years I was back to where I started. You can't cheat on dialysis. They weigh you when you get there and when you leave and every month they do blood work which tells them how you have been eating. I am always low on protein and am supposed to do a supplement which I am not good about doing. It seemed that my weight was always going up. My clothes from last year didn't fit me this year and I had to go out and buy new ones a size bigger.

Well, since November I have been losing weight. I was having trouble with my mouth and couldn't eat very much then. I am better now but still don't have much appetite. I have lost 10 pounds. My nutritionist at dialysis sat down with me this week concerned that I was losing weight too fast. Usually people are talking to me about gaining weight, not losing. She is concerned that I am not eating properly. I would still like to lose some more weight, maybe about 10 pounds which would still put me at 150 pounds. No skinny minny by any means.

What has been your experience with your weight with scleroderma? I know some of you have gained and some lost. I am curious. Looking forward to hearing about your experiences.

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#2 ladyhawke

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Posted 10 January 2010 - 10:29 AM

I have been up and down with the weight, depending on the medications. Since I have started to get better I have put on weight, this is the heaviest that I've been. I'm "trying" to wean off the prednisone now, the doctor says it will take me a good year. I'm hoping to drop some as I lower it but we'll see. I can see where a there would be a concern if you are dropping weight "fast" I don't think that is healthy no matter how heavy you are. It's best in any situation to lose slowly. I also think that if you have weight on, if you did get into a flare or get really sick it would be better for you than if you were thin and not able to afford to lose any weight. Will be interested to see what others have to say. Keep us posted on how you're doing. Hugs - Lisa
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#3 judyt

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Posted 10 January 2010 - 10:47 AM

Hi miocean,
I was always a seesaw person as far as weight went.

Sometimes I was about 140 to 150lbs some years more. I was married at 22 and weighed 147 and by the time I was 40 I was mostly about 155 - much too heavy.

Then in 2003 I had a crisis with my stomach and was diagnosed with CREST. The stress killed my appetite and I lost about 10 to 15 lbs in a short time.In December 2004 I had a partial gastrectomy to remove tumours (which was similar to the procedure which is carried out on obese people) and since then I have stayed at 130lbs as an average and I love it.

My appetite has stayed the same too so I try to eat really well to ensure my nutrition is OK. Lots of meat and vegetables and fruit, very little refined carbs, NO Alcohol, caffiene or chocolate (boo hoo) because of my Heart (now pulmonary hypertension) and I really no longer have any appetite for sweet things except ice cream.

I know that THEY say losing weight fast is not good for you, but I did so now I just think make the most of it and try to stay where I am happiest. I try to weigh myself every Thursday morning before I get in the shower and if I have gained too much I don't find it hard to have a quiet day or so food wise and I get back again to where I was. My friends are quick to tell me when I am getting too thin and when we all go out to eat they give me a hard time about the small portions I choose so we just make it all a bit of fun.

I don't have kidney problems yet and I know one has to be very careful about diet when that is the case but I still think if I am happy with myself then I will feel better.

Good luck to you with all your hopes and dreams, and more HOT hugs to you from New Zealand.

Judy T

#4 Jeannie McClelland

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Posted 10 January 2010 - 01:42 PM

Sigh~ I've gained weight. My diet and calorie intake are fine, my exercise levels are good, but no matter what I do, I just cannot shed the extra pounds I've gained. Even coming off prednisone and starting thyroid medication hasn't made a difference. I'm not hugely overweight but there is a 5-10lb. increase that seems like it will stick with me forever. I wouldn't honestly mind being well rounded, but I know the extra belly fat is taking up 'breathing room' and is tiring to lug around.
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#5 Deb1million

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Posted 12 January 2010 - 09:31 AM

hi Miocean
My weight went down a bit after my diagnosis, and I thought this may have been due to stress at the time. I've since gained weight due to medications and am now at my heaviest ever. My diet hasn't changed as I have diabetes and take insulin, also have thyroid problem which affects my weight.

I may be wrong, but found myself wondering that if I get further problems in the future with my kidney disease going to the next stage (dialysis), or maybe my GI involvement gets worse, ie malabsorbtion, that I may cope better if I have some weight to lose. Who knows?
One thing I know for sure, is that when I used to be thinner, I felt the cold much much worse! So I'll hide under my fat this winter! :-)

#6 Amanda Thorpe

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Posted 14 January 2010 - 01:22 PM

Hello Miocean

Well I was a UK size 14 (no idea of weight) and went down to a size 10 in 6 months then went down to an 8. All because of scleroderma of course. Now at year three I am back to a 14 and prefer being this size. I did start to creep up to a 16 so started watching what I ate and weirdly the weight came off quicker than it did when I used to exercise regularly when I was well! Go figure!

Take care.
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#7 warmheart

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Posted 15 January 2010 - 03:57 AM

My weight has always gone up and down. When my esophagus first bit the dust years ago I was pretty skinny and thought the silver lining in the cloud was that I'd be skinny forever. NOT! Eventually I adjusted.

Then a couple of years ago I got severely anemic and went into heart failure and lost about a pound a week for a few months even though I was eating an insane amount of calories; eventually I stopped eating much because I didn't have the energy, so I was really thin, but unfortunately too weak to get out of the house to show off (or probably to care anyway).

Now it's your basic battle of the bulge; I have to eat healthy and walk a lot. My GI motility seems to be slowing down, so I try to eat lots of roughage (which sometimes works, sometimes doesn't), which is probably a good thing because I eat a lot healthier. Swallowing is often still a bit of a chore, but once a glutton, always a glutton! I don't let it slow me down (unfortunately). ^_^

Amanda, UK sizes run a size below US sizes. For example, a Laura Ashley size 10 is a US size 8. (I'm a huge fan of Laura Ashley dresses, which is how I know.)

Hugs,

warmheart

#8 warmheart

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Posted 15 January 2010 - 03:58 AM

P.S. Miocean, glad all went well--hope you're healing up!

#9 Joelf

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Posted 16 January 2010 - 06:58 AM

I'm 157cm & weigh about 55kgs but I have to work very hard at the gym & watch what I eat constantly to maintain it as I really don't do weight gain!! :(

Since taking prednisolone I have found the weight wants to accumulate around my stomach; I keep hoping the one upside of Sclero is that I'll lose weight easily........I should be so lucky!!! ;)

Amanda, maybe the reason you've lost the weight quicker now is that you could possibly have lost muscle as well as fat which you didn't when you were able to exercise; lucky you to be able to lose weight anyway; I'm very envious!! ;) :D

Jeannie, I can really sympathise as I think it's actually much harder to lose a small of weight when your're near your ideal than it is to lose a huge amount if very overweight, if you get my meaning!! ;)

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#10 alice1

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Posted 16 January 2010 - 10:43 AM

Miocean,
When I got scleroderma six years. ago,I went from 135 lbs(my ideal weight) to 117 lbs (my lowest) and I lost my appetite which I have not gotten back since. However, my waist went from 28 inches to 31 inches which does not make any sense. I am now 122(still skinny)and I can't seem to get any higher. I agree with others, I think it is healthier to be over weight than under.....alice

#11 miocean

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Posted 26 January 2010 - 05:23 AM

Hi All,
It was interesting to hear your stories of your weight gain and loses. I found out that losing weight has not necessarily been good for me, My eating habits were not good for a couple of months and now I find my hemoglobin is low which will probably interfere with a kidney transplant. I have to eat better but my appetite is not that good. I find I have to make myself eat which is a first. I fit into my clothes much better since the weight loss and that feels good but in this case I think the bad outweighs the good.

miocean
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#12 Sweet

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Posted 26 January 2010 - 10:23 AM

Unfortunately I gained 30 lbs.
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#13 miocean

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Posted 06 March 2010 - 05:34 AM

It has been very interesting to me to hear your stories about your weight gain/loss. My weight keeps going down. I went to my scleroderma specialist yesterday and the first thing she said is you are losing weight. You lost five pounds since I saw you in January ( I am now close to my 150 goal). She didn't think this was good and I reminded her that once I came to see her and she commented that I had gained weight and I might have to diet like the rest of us. I can't win. The bad thing is I don't have much of an appetite and find I really have to force myself to eat.

Apparently when you are sick doctors prefer you to have a little extra weight as a buffer. Then she said that after the kidney transplant I'll be taking a lot of steroids and will gain weight. I hope that doesn't happen as I feel better now at the weight I am at. I have never been able to keep a steady weight unless I was heavy otherwise it has been up and down, a real yo-yo. Let me know how you all are doing. Thanks.

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#14 Lynnie

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Posted 06 March 2010 - 02:23 PM

Hi

I'm under active thyroid wise and have been for 6 odd years. I'm still rounded, but I feel *firmer* somehow. I carry tummy fat,typical baby belly, saggy muscle but it's alot less than it was but little excess fat elsewhere. I'm over 10st; I dont weigh myself at all, but friends and work mates say I'm thinner than I used to be!.

I get round the appetite issue by not making a big deal of it, I cook the family evening meal and put a small plate up for me,and eat a little of what I fancy during the day,say a cup of soup and a small sandwich and yoghurt.

Please dont stress about your appetite and weight as long as you're steady. Go with it.

love and hugs Lynn

#15 Sharon T

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Posted 06 March 2010 - 07:34 PM

I've yo-yo'd 15 lbs up and down over the last year - down when hospitalized or having a really nasty GI attack, back up when not. Then I started on Imuran and a higher dose of prednisone and gained another 20 lbs in 3 months or so, most of it around my middle. Now I have "fatty liver" deposits and have to lose weight. And I've started back on Ambrisentan (which of course has the side effect of making you gain weight...) The extra pounds are not coming off nearly as easily as they went on! Quelle surprise, eh? Anyway, it is helpful mentally to read about the weight trials and tribulations of fellow sclerodermians - too bad it doesn't also remove a few fat cells! <_<
Sharon T.