Feeling Fat

[abloedel]

I hate to repeat myself, but for those of you who don't know, I was diagnosed with CF at the age of 36...so much of this is new to me.

Anyway, I have been taking my enzymes (not religiously) and had managed to put on about 20 lbs. (I had lost 15 while in the hospital, so a gain of +5 I thought was really good)...anyway...it put me at 120lbs. This is more than I have weighed my entire life except for when I was pregnant. Stupid people still told me I needed to eat and I "looked" sick...but that's another issue.

My point is that I just finished a course of Prednisone and being on that gave me sort of the "moon" face and also caused me to gain ANOTHER 10lbs. Now, none of my pants fit and the ones I can actually pull up I can't fasten. I'm feeling SOOOO fat, and my friends don't seem to be at all compassionate about this. They just keep saying "welcome to the real world"...oh please, gag me!

I know that having the extra weight is good and I will lose it the next time I get sick and am on IV meds, but for the moment I just feel fat and no one wants to allow me to just feel FAT.

Thanks for letting me vent!

Amy
36 w/CF, recently diagnosed with Osteopenia, and mom to 16 yo w/o CF

 

[2sickkids]

I have been taking prednisone for over eight years I alter weekly now and while on for a week I gain 15lbs. My doctors think that and the very high doses of insulin while pregnant are why I am having a time losing all my weight from being pregnant. I have had the round face thing for a while that is not uncommon for prednisone users. I say feel fat I do even though I have people tell me I look like a person now and not a stick. I was 104 most of the time before my kids and am 5'6" 1/2 . I can't stop the predn my doctors flip out when I ask and say it's better to be bigger then I like then not breating. I am not a cfer just pretty sickly.

 

[Mockingbird]

This sort of thing isn't very common with CF, but i know you're not alone. There have been other posters feeling the same way.

And if my friends ever said "welcome to the real world" to me, i think I'd lose it. <img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[Emily65Roses]

At one point a few years ago, I gained 50 lbs in under a year because of anti-depressants and birth control. I felt fat and was really depressed about it for over a year. Finally I decided I had had enough. And in a matter of 4 months, I lost 40 lbs. It's possible, just difficult.

And I agree, if any of my friends said that to me I'd smack them upside the head.

 

[luke]

Amy,

When I was younger (16) I was put on high prednisone for months. I probably gained 30 pounds but looked like a gained a hundred. My face was so swollen I looked absolutely nothing like myself and hated looking in the mirror. Of course another nifty side effect from prednisone is depression, so swollen + sad = home bound tutoring. I finished my junior year of high school at home hiding from people. I only felt comfortable around a few people and that list shrank everyday. When I was around those I knew I just did not feel comfortable because I not only received 0 support but even better....I got ridiculed. Then one day a hospital employee energized me to lose weight, she told me she liked me heavy because I looked like my mother (who is very overweight) I, like Emily went, on a diet (except my was a crash diet and looking back I am lucky I didn't kill myself) and lost the weight. If you decide to "lose" the weight exercise and cut back on your the nutrient of your choice (fat, carbs, calories) it will work but it is hard!

I know how very hard it is to deal with the "prednisone" I will encourage you to trudge on, the look will go away once you are able to get to an lower or ultimately an every other day dosing regimen.




Luke 29/cf (I will be 30 in 28 day and am anxiously awaiting my party!)

 

[kybert]

i feel your pain <img src="i/expressions/face-icon-small-sad.gif" border="0"> i use to take prednisolone. i gained 10 kgs when i was on it. some people might go oh 10 kgs whatever you have cf thats ok. but it was awful. i had so much trouble doing everyday tasks with the amount of fat that was on my stomach. it got to the point where i had to ask people to tie my shoelaces up and pick things up from the ground. bending over felt like i was crushing my lungs. it also cost a truckload for a new wardrobe. but that was the least of my health problems where prednisolone is concerned. the side effects are so bad for me that i refuse to take it, luckily i havent needed it. i honestly feel that if i take prednisolone, it will kill me before cf does.

oh, i am now back down to my normal weight <img src="i/expressions/face-icon-small-smile.gif" border="0"> it takes a lil time to get rid of it once the course is finished but it does happen!

 

[abloedel]

I am going to try to lose the extra 10lbs...I just hate the way I look! Unfortunately (or maybe it is fortunate), I can't do crash diets...I get a major headache if I don't eat something every 3 hours or so. I'm going to try cutting out the soda and see what that does. I've heard you can lose like 5lbs in a week just by doing that....we shall see.

And to Luke......Happy Almost Birthday! Are you doing anything special to celebrate your30th? For mine, I did Karaoke for the 1st time....didn't do it well, but had a lot fun trying!

Amy
36 w/CF

 

[Emily65Roses]

Try doing some exercise too, if you can. Even the littlest bit helps, because it takes more out of us to exercise than it does most people. This, of course, leads to losing calories faster. It's a pain in the butt, but you can do it. I'm just about the laziest person I know, and I lost 40 lbs, once I decided to do it. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[abloedel]

I inadvertently exercised yesterday....I was with a friend and we were playing pool...I ended up walking around a lot...I know, not really truly exercise, BUT the scale says I lost 2 lbs! <img src="i/expressions/face-icon-small-happy.gif" border="0">

I will at least try to walk, Emily...I do have major coughing fits if I do too something that causes me to breath too deeply. Thanks!

Amy
36 w/CF

 

[cfmomma]

Hello Amy, I was on very high doses of Prednisone for a long time. I don't have CF, my son does, but I have taken quite a few of the same medicines used to treat CF. I went on prednisone at the age of ten and it did wonders for me, I went from 50lbs to about 70lbs in a very short time and went into remission. I was never able to completely wean off of the steroids but I was on a maintenance dose. Once I got to high school I got sick again and had to increase my dose. I gained so much weight in such a short period of time that I got stretch marks on my thighs, hips, etc... and I got the "moon" face.

And just like Luke I ended up on home-bound. I missed most of my senior year of high school, not that I wanted to be there anyway. I was very depressed and wanted to stay at home all the time, people can be very cruel and very insensitive. Here are some of my favorite: "Holy F***, what happened to your face", "Stop feeling sorry for yourself-at least you're not starving", "you needed some meat on your bones", "I wish I could stay at home and do my schoolwork"

People, including your friends, will always say stupid things, that they haven't thought through. Confront them and let them know how offensive their remarks are to you. You WILL lose the weight, most of Prednisone weight gain is water and will come off rapidly. The "bloated" feeling will go away first and with a little work the "fat" will come off too. Cutting salt out of my diet helped speed up my weight loss--however, with CF I wouldn't recommend that.
You can get through this and just know that your friends will be jealous of you very soon!!!

 

[cfNana]

I keep trying to talk my Dr. into letting me have prednisone. How tall are you? I'm 5'6" and am currently at 105, thats only because I have recently had a PEG put in, I do understamd how you feel though. I've always weighed around 92 to 98 during my good times, but a year and a half ago they put a PICC in for TPN and I gained 10 pounds right off. In the beginning I had a very pudgy stomach and for someone that has never weighed very much it was hard to deal with and like you no one understood. I ended up loosing that PICC and then got a port, that time I didn't get the pudgy stomach but it took me forever to gain what I lost after loosing the PICC ( about 2lbs a month). I finally got to 112 and got sepsis so I lost the port as well, then I got another PICC but it went bad within a month I maintained 98 but wanted to gain more so I talked my Doc into the peg. He was afraid to let me have one because I'm pretty much totally pancreatic insuficient and he didn't think my digestive system could take it but after the initial infection so far so good. I'm sure you aren't fat but I know it feels wierd. My short term goal weight is 110, but I really want to get to 120. ( I think ) I'm 46 with cf and wasn't diagnosed until I was 28. cfNana

 

[abloedel]

I'm 5,4", so if I lose the 10lbs, I'll still be at 120 (118 if I don't count the 2 I've already lost), which I think is quite good for anyone, let alone someone with CF. I do have the pudgy belly, which is way new for me and I think what's making me FEEL fat...

My average weight has been around 100 lbs, until a couple of years ago, when I started putting on weight, a little at a time, which I didn't mind and thought was a good thing. At my sickest points, I have gotten down to 85-90 lbs range. When I have gotten that low, it generally takes me a good year to get back up to 100lbs. I "feel" the healthiest around 110 as far as energy levels go and how I look.

I just get so frustrated with my friends because they know I've struggled for years to keep weight on...and the weight I recently gained on the prednisone literally was overnight and now they're like "ha...now you know what we go thru!" I have never NOT been sympathetic to their struggles with keeping weight off, but I have also NEVER seen anyone of them gain 10lbs in two weeks!

I'm so glad for all of you and your understanding! The one "good" thing that's come out of my diagnosis has been finding this site and finally having friends to talk to that can actually relate to what I'm going thru!

Amy
36 w/CF

 

[anonymous]

Oh my gosh. I am right there with you! I am steadly at 140ish pounds all the time. I could live with this. I am 5'5" and I'm very proportioned. However, recently, I am at 150 pounds. In my mind I'm thinking "Oh it's ok! I have CF and I'd rather be on the heavier then thin side incase I get sick." Then the realistic side say "I don't ever lose weight when I'm sick." I have decided to do weight watchers and I start tomorrow. I know I need to exercise more but I am lazy and I can find every excuse to not go. (including it's not air conditioned so I feel like I'm suffocating.) I feel SO horrible about myself right now. I could cry daily and I swear my husband is not allowed to look between the areas of bellybutton to knee. I have so many dimples it's so gross. I knelt down the other day and you could see the fat under my skin. I feel like an old over weight lady. I am so depressed about it.
I am so glad I'm not alone and I just didn't have the courage to post this because so many CF'ers are thin that I didn't want to be told to shut up for looking the way that some people try to look. But I'm so unhappy with myself and my body, I HAVE to do something!
Thanks for posting this topic.
Kelli

ps. Emily how much did you weigh before you lost your weight? And how tall are you? I would be happy to lose 20, I don't think I could ever do 40. You da bomb!

 

[anonymous]

Have any of you gained weight from Advair? Battling extra pounds and having CF is unsettling, especially after all the years of pumping up the calories. Those of you who have this issue...what kind of PFT's do you have? I am hoping this is a symptom of good health.

 

[anonymous]

Well, I don't have CF. But, I am 30 weeks pregnant and extremely emotional right now. Everytime I go to the dr's office it seems I've gained 5 or 6 more lbs. My once thin body (5'9 120lbs) is now a whopping 180 and I just want to sit home and cry all day. I hate coming to work because people are always commenting on my weight gain, "Wow, do you think you will be able to lose it this time?" URRGGHHH, I could bite their heads OFF! I'm sorry your friends are so insensitive, mine are too. Its like can't you think before you open you mouth? How hard is that? How hard is it to be supportive and say something kind to someone who is obviously feeling down. What you feel is never wrong, if you feel fat then you feel fat. But trust me, your not fat and I bet you look great! Your just not comfortable carrying the extra weight because your not use to it and you don't feel like you. Maybe give it sometime and you will adjust.
Jen

 

[anonymous]

Jen - I'm sorry you're not feeling good about yourself right now...when I was pregnant with my daughter, I gained 70, that's right - 70, pounds! I lost it all 3 weeks after I had her. I'm sure you will too!

Thanks for the kind words to me about feeling fat...I still do feel fat, and yes, my "friends" are incredibly insensitve at times. I have lost 3 lbs in 3 days, so I'm feeling quite good about that. Most of my clothes still don't fit, but I don't feel as bloated/swollen as I did. Does anyone know if the feeling like your whole body is swollen is a side effect of predinisone?

To the poster who wanted to know about gaining weight from Advair...I'm on Serevent and Spriva and believe that the Serevent has also contributed to my weight gain, but not to the extent that the Predisone did. Don't know if it's true, but I think that Servent has Advair plus something else in it. My PFT's are in the low to mid 50's pretreatments, and low to mid 60's after treatments.

Amy
36 w/CF and still feeling fat! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[cfmomma]

Yes, prednisone will make you feel very bloated. You retain much more water than usual and it can cause major weight gain, which can be good if you are ill. You gain weight over your whole body but especially on your torso and face (moon face). It is primarily water weight and should be very easy to lose once prednisone is discontinued.

 

[anonymous]

Amy-
70 lbs in three weeks, WOW!! Thats what I want to do I don't want to come back to work until I look great, so I can rub it in everyone's face. I can't wait to have this baby and get back to being me.
Jen

 

[anonymous]

Prednisone can make you very bloated. Exercise does help, but it doesn't take away the bloated look. I was on prednisone for 17 years. Growing up I was very active. I did swimming, track, gymnastics, and martial arts. Doing all that the prednisone still made me look bloated. I'm 4'9 and usually weighed under 100 lbs as a kid. I have since switched doctors and they put me on advair. I thinned out so much that I had to throw in some weight lifting and more eating so I wouldn't look like a starving child. The bloated look is gone. I am still active (figure I'll keep it up for as long as possible), but now I look more normal. I still have the CF belly, but according to my boyfriend I am a work of art (flattery does help a person feel better). See if your doctor will change the type of steroid you're on.

-Sunnie

 

[JazzysMom]

How long did it take for everyone to be on the Prednisone before this substantial weight gain started? This recent flare up is the first I ever used any steroids of any type. I was only on them for about 1 month & the reactions I had were the acne (not my usual..almost rash like) & an unstoppable appetite.