Posted 10 January 2010 - 05:35 AM
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.
Posted 10 January 2010 - 10:29 AM
Posted 10 January 2010 - 10:47 AM
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.
Posted 10 January 2010 - 01:42 PM
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Posted 12 January 2010 - 09:31 AM
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! :-)
Posted 14 January 2010 - 01:22 PM
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!
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Posted 15 January 2010 - 03:57 AM
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.)
Posted 15 January 2010 - 03:58 AM
Posted 16 January 2010 - 06:58 AM
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!!
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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Posted 16 January 2010 - 10:43 AM
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
Posted 26 January 2010 - 05:23 AM
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.
Posted 06 March 2010 - 05:34 AM
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.
Posted 06 March 2010 - 02:23 PM
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
Posted 06 March 2010 - 07:34 PM