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Weight questions


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#1 Libby

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Posted 09 February 2009 - 08:28 AM

I lurk here from time to time and I have a question for everyone. I have CREST syndrome with pretty bad Raynaud's. I got diagnosed in 2004 and I am managing pretty well with my current regime of meds. The question I have is has anyone else suffered weight gain with Raynaud's? I know I got depressed after my diagnosis and all, but I have gained a lot of weight. I exercise 3-4 times a week, plus chase my 2 yr old a lot. None of my meds seem to have weight gain as a side effect. I know this sounds silly, but could my body be keeping extra weight to keep me warm? it is getting pretty frustrating. I see my rheumatologist at the end of the month and I will ask her too.

Thanks for any help!
Libby

#2 debonair susie

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Posted 09 February 2009 - 08:51 AM

Hi Libby,

So glad to see that you found us... Most importantly, that you posted!

As active as you are with your 2 year-old...all of us moms can attest to that... as well as the exercise regimen you keep, it's quite possible the muscle contributes to the gain.

Also, I noticed that my body changed substantially, when I became chronically ill. It seems nothing stays the same. However, after time, things settled down and my body "got back" a bit closer to where it had been....pre-illness.

The timeline for you, is very close to what mine was, so chances are things will settle down for you also! (I too, have CREST...the 'REST' of CREST)!

Now, I've just related MY experience, but I'm sure there will be others who will have much more to add to your thread.

Take care and hope to see posts from you often, Libby!
Please let us know how your appointment turns out, won't you?
Special Hugs,

Susie Kraft
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#3 Sweet

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Posted 09 February 2009 - 10:35 AM

Hi Libby,

Welcome to the Sclero forums. I'm glad you've decided to post.

I have gained 35 pound since my diagnosis. However, I'm not sure what to attribute it to. My guess is you can't pin it on any one thing, unless that "thing" is prednisone!
Warm and gentle hugs,

Pamela
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#4 JANQ

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Posted 09 February 2009 - 11:38 AM

Hi Libby:

I got pretty bad in February of 2008, but wasn't diagnosed with UTCD until December of 2008, and this was after 6 years or more of some pretty nasty symptoms. I am glad you addressed this issue. I gained 30 pounds from February of 2008 to August of 2008. I did not change my diet at all, so I knew this was something associated with my, as of that time, undiagnosed disease. I did address this weight change with the rheumatologist I am seeing, but have not had any feedback.

I am going to persist on getting an answer. I will post another reply if I find anything out!

I know it is frustrating!! Especially when you are active with an energetic 2 year old, and keeping up an exercise routine.

I wish you the best of luck!

Best wishes.

Janet

#5 Jeannie McClelland

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Posted 09 February 2009 - 11:43 AM

Hi Libby,

Me too - on both the weight gain and more especially the welcome. I gained 25 lbs after the diagnosis and blamed it on stress eating, but who knows? A couple years down the line and the weight is slowly coming off.

I'm with Susie (bearing in mind we've never laid eyes on you and definitely aren't medically qualified to say much more than ouch!) - it's gotta be muscle!

Welcome again! Best wishes,
Jeannie McClelland
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#6 Jeannie McClelland

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Posted 09 February 2009 - 11:48 AM

Hi JanQ,

Welcome to you as well! I'm sorry you and Libby needed to find us, but am very glad you did.

Can't doctors be frustrating?? Good for you for being persistent. We definitely must be our own best advocates.

Again, welcome and best wishes,
Jeannie McClelland
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#7 Amanda Thorpe

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Posted 09 February 2009 - 11:51 AM

Hello Libby

Welcome and glad you've posted.

Weight gain or loss seems to be tied up with sclero and I am not sure if it's meds or the disease. Yes I know some meds are notorious for weight gain e.g. prednisilone and for some of us we have a radical lifestyle changes and become less active.

My weight has gone up and down since I became ill and it has not all been tied up with medication. Before sclero bit I was a UK size 14, I then went down to size 8 at my most inactive and unwell. I am now a size 12 and seemed to go from a 10 to a 12 overnight! What I find weird is that I am more active now than when I was an 8 so the weight gain can't be because I am doing less and I am not on appetite increasing meds so not eating more.

Also the weight is sitting in different places from what it did before so much so that my shape has changed from that of pear to apple! :lol: Mind you I can't complain because when you're apple shaped the blubbery bits are easier to hide! :D I have now reconciled myself to the fact that my weight may well yo yo so much that I'll be the one going ho! ho! in December.

Seriously your point about the body retaining the weight to keep warm is an interesting one, the body could also be holding onto weight in response to the trauma of sclero. It having been suddenly reduced to a smaller size than it liked may be determined to not let this happen again by fighting to hold those fat reserves. It's like it has a mind of its own and I do wonder if a bit of horizon adjusting is required in relation to what size we can realistically achieve post sclero. Remember whether we're too skinny or too big we are amazing and unique because every day we do battle with sclero and win, win, win!!

Take care.

Amanda
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#8 Libby

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Posted 09 February 2009 - 12:33 PM

I would like to think it's muscle, but I don't think so. :) Oh well. I will bring it up to her (my MD) when I see her at the end of the month. I will keep you posted and I will visit more often.

Thanks!
Libby

#9 Snowbird

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Posted 09 February 2009 - 12:47 PM

Well Libby, it looks like we are all on the same wagon as far as weight goes....so I just want to welcome you too!
Sending good wishes your way!

#10 Margaret

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Posted 09 February 2009 - 01:21 PM

Hi Everyone,

This weight issue was a learning lesson for me!!!

Gareth was a size 36" waist before the sclero/UCTD hit. He quickly began to lose weight and dropped all the way down to a size 30" waist within 2 months. Well, dummy me, got rid of his old pants and, of course, bought new ones. Long story short....he is now back into size 36" pants and I have two full drawers of old, slightly used pants from size 30", 32", and 34" that he can't wear any more but I won't make the same dumb mistake of giving them away this time!!!

Take care, Everyone.
Margaret

#11 ozzy69

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Posted 09 February 2009 - 03:29 PM

Hi Libby,

I have actually lost about 30lbs in the last 6 months since I was diagnosed with Sclero. In prior years I was diagnosed with interstitial cystitis (IC) and fibromyalgia, and the doctors tried lots of meds on me. They made me gain weight. I got off all those meds. I eat small meals all the time because I feel sick if I eat large meals now. I do exercise at least 3 to 4 times a week because if I don't I get stiff and hurt worse. I don't want to lose anymore weight so I make sure I eat even when I do not feel good. I guess Sclero effects everyone different.

Hugs,
Nina Lynn

#12 Shelley Ensz

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Posted 09 February 2009 - 05:43 PM

Weight issues should always be addressed with our doctors, of course. I've never heard of Raynaud's causing weight gain, but of course, I have no medical training, unless you count that first aid course I flunked. :blink:

However, Hashimoto's thyroiditis or other thyroid problems occur quite often, either alone or along with autoimmune diseases, such as scleroderma. I have Hashimoto's. It piled on the weight in an astounding fashion, before it was diagnosed. I believe it went undiagnosed because my doctor just thought I must be eating too much, even though I was leading an aerobics class three times a week, swimming three times a week, and on a strict diet throughout the entire rapid and massive weight gain.

But you know some doctors, they just go "Oh yeah, SURE you are dieting and exercising! Pull my leg farther will you?" and don't even bother to run a thyroid panel. It took many more years before I found the right treatment (Armour thyroid) and dose. Once I did, it stabilized my weight, at least by putting a stop to the gain.

If I had it to do over again, I would have educated myself about causes of weight gain (besides diet and exercise) and asked for a complete thyroid panel with autoantibodies. And I would have changed doctors if the test was declined, for it would have meant I was not believed, and trust is or should be a two-way street with doctors and patients.
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Shelley Ensz
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#13 JANQ

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Posted 05 March 2009 - 12:59 AM

Hi Everyone:

The yo-yo-ing weight issue is truly confusing. My last weigh-in was on January 20 at the rheumatologist's office. I remained steady until about six weeks ago, when I noticed my weight going down. I am now 10 pounds down in six weeks. It surprises me since this yo-yo-ing weight isn't associated with a change in diet or activity level.

Well, I'm not complaining, it seems to be coming off now as quickly as it came on!

Take care everyone!

(((Big Hugs)))

Janet