Sjogrens World Forums

This thread is dedicated to those of us with concerns about their weight...too much, not enough, losing, gaining, whatever the concerns are.

It's a place to discuss various diet plans, successes, non-successes,  achievements, frustrations...basically whatever we need to talk about in the realm of maintaining a healthy weight.

If you like, it can even be used as a check in site for progress reports, if you are following a plan and just want some documentation and accountability.

It will be "stuck" near the top of the board for easy accessability.

LInda

Thank you for this. I need to lose some weight. I shall be a frequent visitor.

Kathy

Hi Linda,

Excellent!!!  I shall be a frequent visitor as I need to lose some weight (slight cough :D).

Patze

I'm actually going to go on record with this...I'm trying to lose 5% of my current weight!

When I saw Queen Latifah's commercial for a national weight loss chain, it struck a chord with me. She has always presented herself with such grace, and her size hasn't been an issue, but she is following the plan to become more healthy! She's isn't divulging her weight or how many pounds she's losing either. I think that is a much better approach than " I can get into my skinny jeans", at least for me (and I've never had skinny jeans anyway).

I'm following the guidelines and nutritional advise of the Canada's Food Guide, and Sparkpeople.com, which also helps with suggestions for activity and exercise.

My goal isn't fast weight loss, I'll be happy with a pound every week or two, which is how I lost 15 % a little over a year ago. Unfortunately I seem to have to be taking 7.5 mg/day of prednisone or less to lose weight, and last summer I had to go back to 15-30 mg/day for a while, thats where the additional 5% came from.

Wish me luck and perseverance, and please forgive me if I get cranky!

Great idea, Linda!

Count me in.

I've got plenty to lose, so am kind of hesitant to commit to a certain amount. I like the idea of committing to a healthy diet and lifestyle long term.

I have joined weight watchers and have lost seven pounds so far.

My problem is that, no matter what I seem to eat when I am dieting, I always end up with terrible heartburn. I think that's weird, and am wondering if I'm just anxious about the whole thing, and the anxiety causes the heartburn, rather than the foods that I am eating? Anyone else have that experience?

Julia

Julia your heartburn could be Sjogren's related. Just throwing that out there.

I need to lose weight and am frustrated. For two years I was pretty sick. I was diagnosed with colitis. Weight was running off me like water. I lost 55 pounds!! Seemed like I wasn't even trying. I had no appetite for a long time.

Then came the Sjogren's diagnosis. The plaquenil prescription. And suddenly my appetite is back!! OK, it's a decent tradeoff...the plaquenil has helped way more than having an appetite has hurt! But I liked it better when things were easy!

So now I am approaching it in a small steps fashion. I'm not thinking of a 30# weight loss, I am thinking in terms of 5# at a time. Maybe this will help me! Seems like when I think of ALL the weight I need to lose I get overwhelmed.

It helps that a friend told me today that I look like half the person I was before. She said she actually saw a waist today! Yahoo!!! I need to focus on that.

I need to lose too.  Actually about 1/2 my weight would be good!!!
Susie, good for you!! Keep up the good work!

Hi-

I'm definitely a member of the weight-loss-needed group. I've gained 50lbs between back surgeries and steroids.

My question - I'm still on 8mg of Medrol, and every doctor I've talked to has said I can't lose weight while I'm on the steroids.  I try hard to curb the weird cravings - I can get on a kick where I really only want to eat one thing - for example graham crackers with low fat margarine and strawberry preserves - and this might go on for weeks.

I make myself eat fruit and high fiber cereal each day (I have a morphine pump, so having a high fiber diet is important) and I'm trying to watch my portion sizes, but I don't seem to get anywhere because the crazy cravings come along and I give in.

Has anyone been successful with weight loss while on steroids?  How did you do it?

Thanks, Tracy

I doubled my body weight in the last 9 months or so a la Prednisone.  I've been trying really hard to loose weight since getting down to a low dose.  The last few weeks I've had no appetite though (probably my Pancreatitis as usual).  So now I'm back to forcing myself to eat.  Twelve pounds came off in two weeks.

I feel like I'm always at one extreme or the other.  I still have about 85 pounds to loose.  It's so weird to have to make sure I'm eating enough while at the same time trying to loose weight.  It makes it a lot easier I guess until it gets to point where I can't keep food down and loosing weight way too fast and end up back on a high dose of Prednisone.

And round and round I go.

Tracy, Medrol 8 mg is equivalent to 10 mg Prednisone, and I couldn't effectively lose weight until I got down to 7.5 mg...for some reason it just seemed to be my magic number. My doctor told me I couldn't lose weight on steroids, too, and almost accused me of stopping the Prednisone when I did lose weight.

I did find that with each wean of steroid, I was slightly better able to control the appetite cravings and surges, for example the final 10 pounds I put on while taking my maximum dose came off when I was dropped to half that...that was a relief, because I found it was that 10 that seemed to give me the Cushingoid appearance, under that I just looked fat. 

Most annoying to me is the distribution of excess weight; in the past I've had overall but proportional weight gain  with my back seeming to take most of it; with steroids my face got rounder and I have a "belly" but my arms, legs, hips and back are not that much bigger than they were. Through 50 pounds up, 30 pounds down, and everything in between, the only things that haven't fit have been things fitted through the torso (tops with fitted shoulders and sleeves, but lose bodies still fit, as do "comfy" pants with elastic waists) and my glasses!

The steroid cravings were ruthless, it wasn't just a matter of "I need such and such to eat" it was "what can I eat next" while I was still swallowing, and the NEVER feeling full, no matter how much I ate. It was getting up in the middle of the night starving to make a pot (not one bowl...a pot) of oatmeal and eating the whole thing with sugar (and I had to go out an buy the sugar the first time because I didn't keep any in the house then).  It meant buying candy! I never had much of a sweet tooth before steroids, and thank goodness it's back to my normal of slight nausea with white sugar or anything containing it.

Since my 3-5 days a week at the gym aren't possible anymore, I have to rely on portion control and healthy food choices to lose anything now, but it's slowly working. Luckily I've always been a bit of a naturalist when it comes to food...I prefer locally grown for the most part, non-processed, minimally packaged, "real" food. Of course I can't get local grains like rice or quinoa, or my very favorite steel cut Irish oats, but I'm not a fanatic about it! I try to avoid anything with the word instant on the package, and (except for dried pastas, beans, grains or fruit) any thing that has a longer shelf life than I do. It isn't convenient food, but I have a lot of time on my hands since I retired. Even when I was working, I cooked on my days off and had my own packaged meals for busier days.

I have to actually measure everything, if I don't I find I'm a very generous guesser! I keep a glass of water or cup of tea (black, green, white or herbal) at hand constantly, and snack on almonds or half a cup of dry cheerios when I need the "chew factor". Cinnamon is my secret weapon, I love it and add it to just about anything that I think needs a bit of sweetness. It has also been shown to help control blood sugar, although that hasn't been an issue for me, even on steroid.

Like any other aspect of living with SjS (and steroids) weight loss is individual and trial and error...you will find what works well for you. Try not to worry about "giving in" to the cravings...once in a while! Your graham cracker snack sounds great, and maybe you could (once in a while) just skip the low fat margarine, every little bit helps, and most of the flavour in that snack would be in the cracker itself and the strawberry preserve.

I know the last few weeks have been heck, but am surprised to find I have lost 10 lbs. Am now down to
104 lbs.   Only noticed when I realised that if I don't wear a belt with my jeans they fall off.
I presume it is just the stress of recent times, but on the other hand wonder if I should get it checked out.
I know most of you want to lose weight and this probably sounds a bit pathetic, but I need energy at the
moment.

Not pathetic at all Uker, the purpose of this thread is "healthy weight control" whether you are concerned about loss or gain. You're probably right about the stress, but if it continues you should probably mention it to the doc. In the meantime, maybe you could start to make a habit of at least one protein and nutrient packed drink every day, just to be sure you have that one boost of nutrition, without having to take a lot of preparation and dining time.

There are many prepared drinks available, I'm just not sure what names they are marketed under in the UK. You could also grab a blender or processor, throw in some yogurt, fruit, protein powder if you can get it, egg substitute (I wouldn't recommend raw eggs, but the liquid substitute is pasteurized), maybe even some chocolate syrup, and sip away! I often put a bit of wheat germ oil in my smoothies.

As much as I need to lose weight - I understand completely the exact opposite - having to gain it.  Neither is easy to the person who has the problem.  You may be the minority, Uker, but we know it is just as hard.  I heard once that a milk shake (real milk, ice cream) is one of the best things to use to gain weight.  You get good from the milk and lots of sugar too.  Trouble is, I love those!!  I have found Steak'n'Shake makes a good one! LOL

Concerned about your weight? - Count me in!  Over the last year or so, I've probably gained 20-25 pounds.  It is so disheartening to get on that scale!  I lost 30 pounds about 5 years ago by watching what I ate and exercised.  This past year has really turned that around.  I gave up my gym membership and don't even walk anymore.  I'm too tired!

My rheumy has really tried to encourage me to lose weight as it will help my fatigue.  She suggested the DVD from Leslie Sansone, "Walk Away the Pounds."  It's something you can do in your home.  I ordered it several weeks ago and it is sitting collecting dust. :-[  Maybe this thread will be what I need to get moving again!

Jackie

For those of you trying to gain some weight I want you to know that Walmarts Equate brand French Vanilla supplement is really good cold with some vanilla ice cream added.  ::) ::) ::)

I will come back some time and talk about my "extra wight" and prednisone. Irish ;D

I make my smoothies out of ground flaxseed, almonds, green tea, vanilla yogurt, and any frozen or fresh fruit I have!  They are yummy and has added benefits supposed to help autoimmune issues!  ( I put some HOT water in the bottom of the blender and let the tea seep in there - then add everything else!)  I make enough for 2 mornings and just leave the rest in the blender in the fridge so all I have to do the next morning is mix it again!  Blueberry is my favorite. 

I find that I am just not hungry anymore - want to lose 10 pounds, but have not been able to.  I have been keeping track of my calories each day and found out I was only eating about 600 a day - Was told I need to get up to 1200 calories a day to lose weight  -  I am trying to get that much every day -even though I really do not feel like eating! Sometimes a few bites and I am done  -  I just feel full.  Maybe it is all the water I drink! I think I will try making more smoothies during the day! :)  Tami K

Hi everybody,

So I'm wondering how everyone is doing with their goals? What seems to be working, and not working?

I have been a little bit successful with weight watchers so far, have lost 7 pounds in three weeks. :D

What works for me is having a bowl full of fresh fruit around at all times so that if I get snacky I can grab an apple before I do something terrible.

What isn't working is going out to eat. It is so HARD! Portion sizes are so huge and it's hard to guess what points values are of some of this stuff.

With my fatigue it is also difficult to get exercise in. I did some housework today - mopped some floors etc., and then headed for my buddy, Couch. Napped the whole afternoon. Guess I'll just have to count the housework as my exercise for the day.
Interested in hearing how others are doing.
Julia

I made it to the gym today and walked 30 minutes on the treadmill! That is a big accomplishment!! My goal is to walk for 30 minutes a day -somedays I break it up to 3  - 10 minute sessions when I am really exhausted -easier to convince my body that I can do a 10 minute walk then a 30 minute one sometimes!  I bribe myself by allowing myself to lay on the couch after my walk!! O.K -I have to be honest - I have only done 10 minute walks a day for the past week and today was the first I did  30. My goal is 30 a day  -now I know I can do it so I am going to commit.  Since I jsut put it in writing I can't back down!  Walking loosens me up in the morning -the stiffer I am, the more I know I need to walk and it does feel better.  As I am walking, I am visualizing the stiffness disappearing!   

Julia, when they put your food on the table at a restraunt, immediately ask for a to go box and put half of it in there so it is not staring at you from the plate -then you have tomorrows lunch!  AND DON'T OPEN THE BOX FOR ANOTHER BIT UNTIL THE NEXT DAY!!!! (can you see how I cheat?)  :)  No matter how yummy it was!  Just a suggestion!!

Tami K

Great suggestion, Tamik!!
Now will you come with me and make sure it goes IN THE BOX? ;D

I need to lose weight, at least 50 pounds thanks to prednisone...grrrr......   ;)

I don't eat alot when I'm not on prednisone but watch out when I am, nothing is safe!!

I'm also starting out slow on my walking.  I walk to the post office which is about 3 blocks down the hill.  I want to break it in slow so I don't over do it!

Debora

Hi Debora, I'm with you girl friend!  I'm working on trying to loose the weight myself, and I walk a ton every day (at the job) and it's not doing much for me (ugh!!!).  Oh well, I need to start doing some yoga or something in addition too. 

I'm having a lot of trouble losing and am now an extremely slow loser (1-2 lbs per month maybe and I used to be able to lose that without even blinking every week before the thyroid did it's thing); I've switched endo's recently and have asked the endo to possibly add T3 to the Levoxyl (and the funny thing is that this doctor has even said that my T3 is on the low normal side) and she hasn't as of yet (Patze banging head on the table).

Hi TamiK, you go girl!!!!  I'm with Julia on the "making sure it goes into the box" ;)!!!  I don't often go out to eat because I get so tired of the stares, and the comments; and I get so feed up with eating salads all the time.  I'm so surprised I've not grown whiskers yet! :D

Take care -

Patze

2 days in a row of walking on the treadmill 30 minutes!!  :)  YIPPEE!!! My goal is 5 days a week.   I really like the treadmill better then walking on my own because it moves my legs for me it seems. I found a gym that costs me 30 bucks a month for the first year and then drops to 9 bucks a month for the rest of my life - and it is so worth it. 

OK -for those of you who have a hard time getting your food in the box, ask the server to put half in the box before she/he brings it to the table : - if you still can't stay out of the box, have her throw it away.. or ask the person dining with you to guard it from you :)   Either that or invite a friend with you when you eat out who will split your food with you!  I also have decided it is better to throw food away then to pack it on my body... it is a bigger problem as a health issue then it is wasting food.  Took a long time to get that perspective changed after being raised to eat everything on your plate!  I don't force my kids to clear their plate - when they are full, they are full and I don't force myself to clear mine either -of course, we do talk about taking small amounts and getting seconds if they are still hungry.  I also keep a bowl of fruit on the table - we all grab a piece of fruit if we want a snack.  And my bag of Hershey's Kisses - when I absolutely need to have some chocolate, I eat one - yes - just one and suck on it for as long as I can!  Usually satisfies the craving!

How much have you moved today?  I am up to 30 minutes but started with 10 - committ to moving your body 10 minutes of the day  -ESPECIALLY ON THE BAD DAYS!  NO EXCUSES! 

FYI - I spend my days encouraging high school kids to do their homework - NO EXCUSES - I figure the NO EXCUSE attitude would work for me! :) 

Tami K

Hi Everyone!
Count me in on the weight loss issue!  I was looking really good this past winter when I dropped 30 lbs. due to constant nausea and the inability to eat!  I still would never want to lose weight like that again, but suffice it to say that since the nausea has pretty much subsided except for small episodes, my appetite is Out Of Control!!!  I have cravings to have some kind of food in my mouth at almost any time of the day!  I have this horrible cravings for sweets and oh I hate to confess this, but actually can eat a can of icing in about 3 days time :-[  I am on 20 mg prednisone, so this is partially to blame, but I never use to eat this unhealthy before I got sick this winter.  It's almost like I'm making up for the months I couldn't eat.  Needless to say, I gained back all the weight I lost and I'm not happy about that.  I run around all day at work (which is the most activity I do all day) and then come home and lay around exhausted.  I too, would like to cut back on the unhealthy sweets, try to walk after work and loose enough weight that my uniforms don't feel unconfortable around my waist!  This thread was a great idea!  I[ll check back in and let everyone know how it goes.  I guess that means I should put the chocolate covered raisins back in the cupboard ;D  Hey...they have fiber!

Barb

My Mom's doctor told her to quit eating when full and the food looks better in the garbage than on her!

I like to dip my fruit in yogurt!  although I just finished eating some nilla wafers BUT it was dipped in applesauce!!   :D

I am another of the small minority who is very underweight and has difficulty keeping weight on. 

I eat lots of bananas.  When I don't feel like eating they slide down easily and they are good with nutirtional drinks.  For me the easiest way to add calories is by drinking grape juice, which I love, also milk, and eating nuts and avocados.

nisha

OK -2 days of intense walking did me in! Yesterday, I was very tired and sore  - but forced myself to go for a 10 minute walk. I did feel better afterwards! Today is absolutely beautiful outside, so I just started walking and before I knew it, I had walked for 40 minutes! This was a leaisurely walk and not the intense treadmill walks!  I just want to keep moving -I have this big fear of eventually not being able to since I was there before. 

I also have to eat foods that slide down easily-  I often skip lunch because a sandwhich is just too dry to eat.  I just bought some lean cuisines to eat for lunches so I make sure to eat them.  I am struggling to eat 1200 calories a day  - which is my daily goal. I think it is due to all my water consumption because I am not hungry!   I had to eat a couple oreo's and milk last night to make that goal!  I am really trying to do it with healthy food though since my focus on treating my sjogrens is to get my body into optimal healing mode.  I AM IN CONTROL OF THAT -even if I cannot control my Sjogrens!  Amazing what feeling in control does! 

I used to be addicted to Diet Coke - can't drink ANY soda anymore becasue it tastes nasty and burns my mouth.  That happened suddenly one day!  I tried 3 different cans thinking the soda was bad! ANyways. I read somewhere that it was better to give your body some sugar when it is craving it instead of grabbing a diet soda - the diet soda will make you crave the sugar more.  I have a friend who mixes 1/2 regular soda with water and cuts calories that way and doesn't get the artificial sweetners.  Works for her! 

I hope you are all doing well with your Healthy Living plans.

Tami,

Great job on the exercise!

I agree about the soda pop irritating the mouth. Sometimes my sense of taste is totally absent, and the sensitivity on my tongue seems worse then, too. What is really strange, though, is that it isn't consistently that way. Other times I can taste things really well. Too well!

When my taste sensation is gone, it doesn't seem to decrease my appetite though! I find myself eating just to see if I can taste things the way that I used to. Gotta quit doing that.

I had a really good week calorie wise until today. I think Sundays are my most difficult days because it's usually the day that we have more time to cook, or eat out, etc. Hubby is usually very helpful but when he gets the notion to splurge it's hard for me to be the one to be good.

Mondays are my weigh in days for weight watchers.

I like to hear about other's success stories  - keep 'em coming.
Julia

Hi Tami, congratulations on the excerise program...way to go!!!!

Hi Debora, ah the dipping in the apple sauce - one of my favorite tricks!  :D  I just love the apple sauce, eh, would prefer the chocolate instead, oh well.

Patze

I am so going to try the applesauce for dipping!  I never thought of that!  OK - I read that if I put my commitment in writing and share it with others, I am more likely to stick to it. Here it is..

Tami's Plan for Healthy Living

1.  I will walk at least 10 minutes a day, but do 30 when I feel I can.
2.  I will eat at least 1200 calories a day of healthy foods.
3.  I will allow myself a Hershey's kiss after each meal (have to have the chocolate in here!)
4.  I will remember to take my vitamins.
5.  When I wake up in the morning, I will spend a minute thinking of all the positive things I have to be grateful for.
6.  Before I go to bed at night, I will reflect on the best part of my day.


I believe in the KISS method - Keep It Super Simple.....  There is my plan - what is yours?  I can't wait for my walk today -  It is supposed to be 70  :) 

Tami K

I seem to be loosing a pound a day... which I know is way too fast for weight loss.  I haven't done the math on how many calories I'm managing to eat, but I'd be really surprised if I'm breaking 1000.  Today I had to take a Zofran before breakfast, so I could keep my cream of wheat down.  And I managed one piece of toast for lunch.  It would be much more gratifying to be losing weight if I felt I could take credit, but its really all my pancreatitis's doing.  Blah.

I also dip my fruit in yogurt!

Patze:  Try dipping chocolate graham crackers in applesauce!   ;D 

I do try to take it easy on that, (haha) the applesauce helps the graham crackers go down easier same with graham crackers and yogurt!

Debora

Hi Debora,

That sounds so good!  I better go buy some graham crackers tomorrow!!! :D

Patze

Applesauce sounds yummy and healthy.
When I want to splurge, I dunk chocolate graham crackers into sugar free chocolate pudding, and top with a bit of cool whip free. Yummmmmmmm
Julia

ohhh Julia that sounds good!!!

I buy the whip cream that has 1/2 the calories so that I can have twice the amount..........   ;D

Take Care
Deb

I gained weight because sjogrens fatigue plus i'll add in some depression and frustration.  Also the pain ruined my running and racing(and i mean 5k's on the weekends not professional) fun.  Now I am loosing ........some but I have  the pooch, you know the food baby.  Some times it's a chinese food baby some times it's mexican but mostly it's it's a grilled cheese food baby.  I've never been pregnant with an actual human baby but right there between my ribs and pelvis contently lies, and I know it's content cause it's not %$#$%^^& going anywhere is my food baby.  It has been nutured, NURISHED, and NOTICED.  But come on it's been well over 9 months and you gotts go food bebe.    Sorry but I needed to vent.   Greenbean  PS I don't know if anyone's posted this but Nufachel cheese tastes the same as cream cheese and is right next to it and has 1/3 the fat or 1/3 less fat I can't remember sorry

Applesauce and graham crackers, yummy!!!

I am fortunate to have lost 40lbs of excess weight and have kept it off for over 5 years.  I follow the weight watchers way of doing things, all things in moderation.  I continue to eat pretty much everything, but must remember to keep the portions under control.  Another thing that works for me in controlling my weight is drinking water with a slice of lemon in it, just enough to give the water a slight lemon taste, not too tart.  I don't know why, but it helps to keep me from getting hungry between meals.  Maybe the lemon just kills my appetite!!!   :D

Also, no matter how much we hurt, and we all do, we must keep ourselves moving in what ever way we can, we must stay active.  I do some form of exercise everyday.  When I am feeling lousy or in tons of pain I rest, but I also make sure that I do not stay in bed all day.  Even just walking around the house is burning some calories rather than storing them lying in bed.

We all live with pain everyday and it is NO FUN, so we must motivate ourselves and each other to do the best we can and be the best we can be.  That was told to me when I was overweight and it helped to inspire me to lose the weight and it continues to inspire me now. I know I am not always the best person I can be, but I'll keep trying. 

I wish all of you success on your journey to weight lose, don't give up, just do your best.

Take Care,

Sue

    Greenbean, The pouch is the last to go, and I especially love the mexican food baby.  ::)

Hi Sue

Congrats on losing the weight and keeping it off!     ;D

Having this extra weight is hard on the joints and all other parts.

Take Care
Deb

So.. I have been waling everyday and yesterday I was just too tired to walk.  Then here comes my 11 y.o. daughter home from school insisiting that I go for a walk with her and the neighbors dog.  I dragged my tired butt out of bed from where it was nice and comfortable and went for the walk.  Before I knew it, we had walked a total of 2 miles.  AND I FELT BETTER!  More energy...more alive.   I am so glad my daughter is so persistant and will not allow me to stay down  -must come from years of watching me do that with her dad while fighting his cancer.  I HAVE SJOGREN"S, but SJOGRENS DOES NOT HAVE ME! :)  I promise myself that I will not take a day off from walking again.... however tired I am or how comfortable that bed is.......

I have lost 2 pounds last week!  8 more to go!  :)

Tami K

Well today I made it to under 200 pounds... 199.  I'm rather happy about that.  Its a lot easier to walk around without those 18 pounds.

I'm not happy with the way I'm loosing it.  I have no appetite and have been living mostly off of toast.  I've had to resort to tactics one would never normally use while attempting to loose weight.  For instance, today my mom took me out to breakfast after an early doctors appointment.  I order a waffle with strawberries.  Normally I would happily eat the whole thing, but today I had to eat it as fast as I could before my stomach decided it was full.  So I managed to eat more than I single slice of toast, but now I'm all nauseated.

I'm probably going to have to put in a call to my GI doc.

I wish I was losing weight through effort so I could feel proud of myself.  :-\

Tami, Congrats! on your ongoing weight loss and walking program!!!
Send some of your determination and resolve my way.

Wordnerd - I am so sorry that you are having a rough time right now. I'll bet that even with the weight loss, it feels as though you aren't in control of your body and it's symptoms. Not fun.

Hugs,
Julia

Beautiful sunny day and still walking! 2 miles!!  I even saw a woodpecker! :)   I swear by positive thinking and that is how I am getting energy and determination. I had to change my negative thinking  -that was just focusing on everything wrong with me - to positive thinking -focusing more on everything that is right with me.  It really has helped. The mind is very powerful.  That doesn't mean that I am in denial -especially when at my physical therapy wednesday I was so weak that my muscles were shaking after 3 reps of the excercises - I usually do 20 with weights.  Plus I had mild vertigo and felt sort of drunk.  Weird.  First time my therapist has witnessed what I tell him happens -He said he likes working with me because I am an interesting patient.  :)  I did manage a walk that evening though! 

Tami

Well I'm officially in a size 12. I went shopping today and the 10's were so tight. I definitely need to exercise so I am going to start weight watchers tomorrow and exercise everyday. I'll let you know how that goes. ::)

I am so glad that I found this post. I got put on predisone since the 1st part of January. It is suppose to get rid of my lymphatic _____ something. in my lungs( I had a lung biopsy in December). They say this is from my sjogren's. Well, anyway the month of January I did 50 mg everyday, then 40 the month of February, 30 the month of March , 20 the month of April, right now I am on 10 mg. then in June I go down to 5 mg. The lung dr. isn't sure if I will ever get off of them,

BUT!!!!! I have gained 25 pounds since I was in the hospital in December for the lung biopsy. It seems like I am always hungry. It never dawned on me, that it is the predisone. Thanks you guys. I know I have to lose the weight, but at least now I know it isn't just me,lol.

What a great idea this is.

I need to lose some weight and have noticed it of late. Especially looking at photos. It really worried me as I don't want to put any extra stress on my body as I think it already has enough to worry about.

One thing I have been tryingto do is get off the computer and get out and move. Thats one reason I think I have put on more weight.

I took the kids and dogs walking twice last week...and of course per usual I am now sick witha virus. Both my kids are at school and preschool and of course no walking as I don't feel like my body could cope with the stress.

It always feels like I take 2 steps forward and 8 back. >:(

Still walking!! skipped yesterday though because I was teaching 6th grade - so I played with them at recess instead! :) 

Tami K 

OK - confession time ;D

Mother's Day was last weekend, and I splurged on mega calories. But mother's day was over on Sunday and I'm finding it hard to quit splurging!

I didn't go to my weight watchers weigh in this week because I am avoiding those scale numbers......

Bad, bad, Julia   :o

Hi Julia

Well, I guess I'll "fess" up too.... I've been eating and eating!  I bought alot of fresh fruit and veggies to munch on but for some reason I'm craving sweets!!
I finished off all the sweets and am now eating the fruits and veggies. 

I guess when we fall of the wagon we need to get on it again!  I was doing my walks in the morning but now it was 80 degrees at 8 am!  Early heat wave!

Debora

i was wondering if the prednisone really did make you loose weight, my rheumatologist did prescribe it to me, i fear of gaining more weight, because that doesn't help at all with the digest problem concerning sjogrens, it just makes it worse.

no prednisone for me :o

For most people, Prednisone causes weight gain, but there are a few people who lose weight while taking it, possibly because for some people it "revs up" the metabolism and energy levels...obviously I'm not one of those!

my Dr said just watch what i eat while on prednisone.  he said stay away from sweets -that the drug makes you crave sweets.  i eat mostly fruit and veggies, some meat , eggs, cereal and i have not gained anything yet ;)

twilite

So.....now I understand why I want to digest a can of icing when I have never had this urge in my life before!  It's the prednisone!  I cannot stop craving chocolate and other bad things like that!  I lost almost 30 lbs this past winter from being so sick and now I've gained back 40!  I'm at a plus 10.  This is not good, but I am so trying to eat good foods, but my mind takes me places I don't want to go.  I'm glad others have the same problem!

Barb

Go........Apples, Veggies, Strawberries, Yogurt, Milk......!!!!!

Barb - I loved your comment "My mind takes me places I don't want to go" - how perfectly stated! I need to find a way to quit going there.

Those tubs of icing tempt me too.
Julia

I'm jumping back in a few pages later...

I haven't lost any weight that I know of, but have been having a terrible time with my stomach.  I'm going for a gastroscopy July 1, the earliest date the doctor had.  My family doctor thinks I may have and ulcer where my stomach meets the small intestine.  She said that would help explain why the only foods I'm really interested are breads and sweeter things. 

All I have to do is look at something that has any spices other than cinnamon or nutmeg and my stomach automatically rebels - I don't have to even put it in my mouth.  I managed some chicken the other day that my husband had pretty much boiled - so it was moist and bland.

But I'm still up at least one a night or early morning, looking for that extra bowl of cereal or piece of bagel to eat. I guess I'm just a bit stuck until the medrol goes awaY.

tRACY

Okay, it's been interesting trying to loose and Lyrica sure does not help either!  :)  Anyway, I'm starting to develop those small blisters in my mouth (on the tongue and everything is hypersensitive) again so that ought to help a bit ::).  Ouch.

I do so crave the chocolate right now, oh well, when this ends I'm going to buy a ton of it and dive into it!!!! ;D

Patze

Patze, I'm right there with you on the chocolate thing.  Saw a picture of the tongue blisters when I "googled" Sjs images. OUCH!

Dear one, I am sorry for you and hoping it clears up soon!

Since starting Plaquenil (2 months) I've gained 10 BLOODY POUNDS!  I hate to say this but I kind of miss the subtle nausea I used to have that kept me from overeating and craving sweets all the time.

Every medication that says "weight loss" is a possible side effect makes me GAIN!  I mean every single one of them!

Janna

Geez I am a regular on this sjogren's board, but it took me till tonight to even read all this on the weight board. :-[ I have a lot of weight to lose, and even my rhuemy said the last thing he would put me on is any type of cortisone, because of how it causes people to gain weight.  ::) Nevertheless, I went with my husband on Monday of this week to see our regular doctor. Him for a follow up, and me for meds for kidney infection. They always weigh us. I had lost 5 pounds. I don't know how I did it. I had been trying to make healthier choices, but not counting calories. Like others, I use to be able to exercise, but now always am so tired. I was so proud though to see that weight loss.

We both go tomorrow for my husbands final day with a diabetes nutrition etc. class. It will be held at a big fitness center.  :D There will be a couple of pools there though. Anyway, he and me along with him are suppose to learn a lot tomorrow. It is going to be a hot sunny trip driving there though. I dread that part, but wouldnt miss it. She told my husband some things on our short one hour visit last week that has brought his sugar readings way down. He is so proud of that. Tomorrow will be all day classes on different things. Time out for lunch.

Well, I will check back in later after tomorrows fun. ;D  Good luck everyone. Lots of good thiings going on with you guys. And hang in there to everyone working on it, whether it is to lose or gain.

susanep :)

Hi Everyone, I have been resting a lot today. Yesterday on our trip it got up to 100 degrees. We are so tired after an all day class. We found out that high sugar readings can also cause dehydration. We are writing down our goals, but going to try to make little changes at a time. They basically let us know we can eat anything, but just have to plan it all in to be eating more good healthy foods. The one lady said she loves chocolate better than anything. She said she would eat a whole bag of chocolate kisses if they were around. So her husband hides the bag, and gives her 3 per day. I think she told that little story to make us feel better in what we are to do. :D

I did learn a lot of good things to work on, and so did my husband. My biggest problem is knowing what diabetes medicine to get on, because the metformin makes me sick, and they put me on actos and I am worried it will cause me to swell. Well I will go for now. My health plan is to eat more good foods. We have to portion vegetables like potatoes , corn, beans, and  peas, but all other vegetables are free to eat, including green beans. Then we portion, the other foods. (moderation) She calls in 3 months to check on how we are doing.

susanep :)

You can stick with that eating plan! :)  I am still walking 2 miles a day, 5 days a week and feeling so much better.  Have only lost 5 pounds - my goal was 10, but I am not willing to starve to get there!  :)  Tami K

We weighed yesterday, and my husband had lost 8 pounds and I lost one more so that makes 6 for me. We were so happy about that. Most of you are exercising better than me. But, yesterday I use a one of those rubber resistant bands and stretched it different ways. I did pretty good. I think I pulled one knee muscle a bit, but it's not that bad. In the class they said they are good to use, and how anyone can use them sitting in a chair even. That is what helps me.

susanep :)

Excercise starts in baby steps!! If  you start to aggressivley, you will give up on it quickly!  Just start slow, do what is right for you, and you will see a difference!  This is a journey!! Enjoy the journey as well as the results!!  :)  When I started walking, it was only 10 minutes a day! Now I am up to 45 - 60 a day and loving it!  Not everyone will like walking though so find something you like!  Tami K

Yes Tamik it does start a bit at a time, but I do feel good about that. It sounds like you are doing really good. Good for you.

susanep

Heres something little that I do for extra exercise...Instead of just standing there brushing my teeth or straightening my hair (WARNING: hold heated product with a strong hand  ;)) I do leg lifts to the front, back, side, squats and lunges...Hey...why not, right?

Hi  :)

Good for you joi!

If I did that I'd fall over. I guess i could always hold on to a chair rather than my toothbrush though!  ;D

Take care - Scottie  :)

I dance when I brush my teeth!  Forget everything my mother told me  about standing still with a toothbrush...... great time to move!! :)   I just bought an iPod.... it is now my best friend on my walks and makes them even more enjoyable!  It is amazing how upbeat music can make the body move more! :)  Tami K

Oh Yes, I can relate to weight concerns too.  I put on about 80 pounds over 3 years and numerous IV solumendrol treatments.  For MS, my usual treatments are 1000 mg  (1 gram) per day for five days via IV.

The effects of the medrol seem to last for years, not months.

So, I have been methodically decreasing my portions.  It's so discouraging to have so much weight to lose.  I try to keep focused on the short term.

The first 40 years of my life, I worked at gaining 5-10 lbs.  It was hard, believe me.  Neither side is easy.

I wish all of you the best with your efforts.

Vicky

I know that prednizone can cause you to gain weight.  Is there any other of our usual drugs that can cause weight gain.    I recently switched from Plaquenuil to Cellcept and was just wondering.   As I suffer from depression  weight gain will put me over the edge!!!!   My rhumy says I need to get some exersize.  I'm 6ft and 240 pounds.   I say right....you try to work out when you live in a hot climate and you are heat intolerant and need to avoid the sun.   You try to afford a gym membership when you are barely getting by because of not working as much.  You try to get exersize when all you want to do is sleep from the fatique.
Steve

Steve,
my biggest form of excercise since I am in Los Angeles for the summer andit is too hot to walk, is turning on music and dancing crazily.....  I find it is fun, plus it works!  Plus, it is free!! :) Tami K

Well, I'm sure in the boat with everyone who needs to lose, last time i weighed this much, I was ready to deliver a baby..and it is seriously depressing me!  >:( I"ve just blown up like a house the past year (25 pounds) Its bugging me since I've gone to such an extreme different  diet the last 2 weeks. I thought gluten free (no wheat or flour, ie bread) low fat and no meat would make me drop like crazy. but nothing.. If my joints weren't feeling so great, I wouldn't bother  ;D, but I know it is helping me...
Steve, I live in the Phoenix area, and sure relate to the heat. If I can get outside to walk around 5 am, it's nice out. I find that starting the day when it's early and cool kinda makes me stay cooler all day! 
Also I was wanting to ask if anyone ever feels they are retaining mass amounts of water in their tissue? I see and feel it in my arms, thighs and around my upper back.. And do you ever feel like exercise makes you just swell like crazy?
When sjs dries out one area, does the fluid shift out into our tissue or something?
Today I'm starting a cleanse to see if I can pull some of this water off  :(
missyb

Everyone wants to lose weight,, and I cant seem to stop losing it,,, SIGH,,

I am now up to fast walking 30 minutes a day on the treadmill, plus working out on the weights another 30 minutes and then stretching for 10 minutes afterwards! I feel great!!  Since my functional medicine doc put me on mass doses of vitamin D (mine was not traceable) as well as a cleanse to rid my body of toxins and some great multivitamins, I have so much more energy!  I have not had a relapse in 2 months -since I started with the functional medicine doc -  that is a record for me!  I am thinking a lot of my issues were related to the low D and B-12 - no telling what else was low!  I am spending the summer in L.A. California and the sun is not even bothering me!  I spend hours in it with my daughter at the pool!   Hopefully you all are still moving! I am fine with my weight, just want to make sure I can keep moving and after not being able to move freely for so long -2 years without dystonia on my right side - now gone, I am really enjoying it!  :) Tami K

Hi Tamik  :)

It's great to read such a positive post. It sounds as though you're doing really well. it's so nice that you're enjoying it too.

Keep up the good work!

Take care - Scottie  :)

Tami, the smoothies you make sound great, they seem to have all the goodies one needs for Sjoegrens and other AI complaint. I can´t wait to make some and see how they work for me.
:) Evenice

Tami,

What did you do to "Cleanse?"  I would like to give it a try.

Janna

I take a Biocleanse made by Biogenesis. I get it through my functional med. doc,  but maybe you can order it online.  I take 2 pills capsules before eating , 2x a day.  really easy to do!  Make sure it is OK with your doc before you do it. A conventional doc probably will not support it though.  My functional medicine doc has given me back my life though - a lot more than my rhuemy has done for me.  I still see her though as well so in case I need both one day.  Luckily, she is supportive of my efforts and is willing to work with my other doctor.  Tami 

I know prednizone can cause weight gain but does anyone know if Cellcept causes weight gain?
Steve

Wow, what a fantastic forum.

Not only are you all helping me cope with my Sjogrens, you are encouraging me to stick to my diet.  I started the Weight Watchers diet two weeks ago so it is still early days but I am determined to lose weight.

All I can say is thank you

Egads, do I know about the "presnisone weight". I just can't seem to lose any weight what with being on a high dose of it right now. Last year I had a knee replacement because of "dead bones" I need to have my other leg done but I can't right now because of the SJ flare up. I laughed when my surgeon told me I needed to lose weight.

If any of you out there know how to lose weight while on huge amounts of prednisone, I could use the help!!!!!!!!!!

You would think that with all the nausea and the hard time swallowing that I would lose weight. NO. I even chocked on watermellon yesterday. Watermelon causing me to gain weight. Sheeez

Denise

I'm on board with the Weight Watchers crew.  I'm actually a life-time member.  I went on WW the first time right after I was dx'ed with SS.  I had gained about 10 lbs from anti-anxiety medicine and another 15 from prednisone while they were trying to diagnose me.  I lost 30lbs on WW over about 5-6 months.  I did gain some back when I stopped going to meetings.  My husband and I both go now and I'm just a couple lbs away from my original goal weight.  I have some really helpful tips:
- Stock up on Veggies and learn to cook new ones.  I found that I love cooking with Zucchini, Spaghetti Squash, and now I'm using turnips in soups.
- Pre-portion your foods.  When you get home from the grocery, go ahead and put snack foods in baggies with the serving size amount you want.  This makes it easier to not over-indulge. 
-Make Soup.  It easy to make a big pot of healthy soup with veggies, then put it in individual containers to grab and heat up all week. 
- If following a plan like WW, let yourself splurge once a week.  My husband and I try very hard not to go over our daily allowance of points all week and then after each weigh-in, we go out to dinner and eat whatever we want.   

My latest soup recipe:
1) Olive Oil Spray
2) 1 TBS minced garlic
3) half-bag of pre-shredded coleslaw cabbage.
4) 1-2 cups shredded, diced, or thinly sliced carrots.
5) 1-2 cups shredded, diced, or thinly sliced turnips.
6) 1 lg. can crushed tomatoes.
7) 4+ cups Low Sodium/FF Chicken broth.
8) 1-2 Bouillon cubes (if you can have the salt)
9) 1lb ground Turkey (99% FF)

Instructions: Spray bottom of large pot with Olive Oil spray.  Add Ingredients 2-5.  Let these soften and stir often.  Add Tomatoes and Chicken Broth, and bouillon cubes.  Cook Turkey in separate pot/skillet and add to soup.  Simmer for at least one hour.  Add more Chicken broth if needed if liquids have cooked out.  Turnips should be cooked through enough that they are no longer solid white. 

Enjoy!

I guess I am lucky. (for once!)

Prednisone hasn't increased my appetite...if anything, I have eaten less since I've been on it. I haven't lost any weight (could stand to lose 20-30 pounds) but I've also stopped all the exercising that I was doing because of breathing issues.  I am happy that I am at least not gaining weight.

The pain and weakness is much better on prednisone, if I could breathe I'd be back to all the walking  I was doing!

Donna

Does anyone else find they put weight on during a flare?  I have been flaring on and off since January and I just seem to swell up.  I am 55 and I know that weight can be a problem at this age, but I seem to have no control at all at the moment.

Beverley

Hi Everyone,
Steve, I checked in my Drug reference book and there was no mention of weight gain for the Cellcept. 

I have a question for all you over the age of menopause ladies.  Do any of you find that you still get that once a month, a week before your period (if you were still getting it) craving?  Also do any of you find that your cravings increase around the time of a full moon. 

Okay, okay, I know it sounds nuts but I had to ask.  I haven't had my period since '87 but I can tell when I should be getting it, if I still did.  I crave chocolate so bad I can hardly stand it.  And around the time of a full moon, oh boy, even the woodwork isn't safe from me munching. 

Right now I am doing fine with my weight plan.  I've lost 51 lbs this past year, but right now am at a stand still due to the fact that my Rheumy put me back on PREDNISONE again!!!!!  I haven't gained anything, but the scale refuses to move in the downward direction no matter what I eat or don't eat. 

Take care and keep up the great work, all of you are doing great?

Hugs, Pooh

Pooh,

I'm afraid I will bust with pride over your weight loss!  You are an inspiration on so many things!


Steve,

I think you are right that flares cause weight gain!  I tend to munch to settle my stomach and also before meds especially advil etc and also to settle down and rest after a long day not feeling well!...and I am sedentary because everything hurts more....and more depressed (which I SWEAR makes some chemical change that causes weight gain!)

WOW POOH!!! WAY TO GO!!! :) 

I am commiting to a triathlon next year.  1/4 mile swim, 8 mile bike ride, and 2 mile run.  I can do this!! :)  Anyone want to train virtually with me?  I walked/ran 2 miles on the treadmill today...

Considering I could not move my right side a year ago, I am really excited!  My dystonia has not returned since starting my B12 shots! I am fully functional!! YIPPEEEEE!!!  I CAN DO THIS!
;D Tami K

GO TAMIK!!! You can do it!!

My neuro wanted me to go to PT for my neuropathy (Fred) and I didn't want to.  I've seen and heard of the torture they put you through and I wanted to try something on my own first.  He wanted mainly to get my left shoulder moving and build up the strentgh in my arms and legs.  So I talked my friend Carolyn into going to Curves with me.  I went and tried it for a week.  I didn't move to quick from machine to machine so the owner allowed me to hold on to the next machine while doing a little movement on the pads between. 

I made it through the first week, felt great (a little stiff) and was sleeping really good.  So I joined and continued the following week.  On Monday of last week something snapped in my left shoulder.  No pain, just the snap.  Monday night it hurt like crazy.  Hubby rubbed it with Myoflex and I used my Rice bag on it.  Tuesday I went back and worked it some more.  I'm happy to say I can now lift that left arm up over my head for the first time in over 5 yrs.  I evidently broke the calcium deposit lose that had froze it up. 

Anyway, I'm not trying to brag, I just wanted to let you all know, that if this old girl can do it, you can to.  I haven't worked this hard and had this much fun in ages.  Of course, after taking 2 pain pills before I leave and 2 when I get home, helps a lot.  I am also doing 5 miles every 3rd day on our Exercycle at home. 

Now if I could just get that scale to start going down again, I would be a very happy person.

Thanks for the congrats, but you too can do it, if you just do what Pud says, "Don't let this disease rule your life"  take charge and fight back. 

I also wanted to say, please check with your doctor before doing any type of exercising to make sure you physically able and won't be damaging a joint or muscle, PLEASE.

Hugs, Pooh

Pooh you are an inspiration!  I don't horseride anymore (not being able to get off at the end proved a bit of an obstacle) but my husband and I are hoping to get a Canadian canoe and take up kayaking together.  I have wanted to for some time and I really feel the need to do something physical.  I still garden but I feel ashamed that I don't do anything like running or walking or cycling.   Note to self - MUST DO BETTER.  After this flare is over I am definitely going to do something.  As for TAMIK - I am just in awe of your positive attitude.  Well done you!

Beverley

Good on ya's!!  Tamik and Pooh!

Please brag away, you are earning it!

Janna

Pooh,
I to find it better when I go to the gym!  I FEEL ALIVE and somewhat in control of my body!  Even in a flare, I go - just walk a little slower and not as far and I cannot lift as much or do as many reps on the weights -but I am doing it and feel better for it! :)  I remember being told by a doc to limit my activity because of sjogrens - I tried that and was deteriorating.  If you do not use the muscles they will waste away and that happens even faster over 40!  I am trying a new approach and loving the results...  the scale still says the same thing, but I FEEL BETTER!  Are you aware of any research involving excercise and sjogrens?  I encourage everyone to start walking - even if it is only to the mailbox and back to start!!!!   That was were I started - even with my right side with limited mobility...  :)  The best part is that I m only taking vitamins now -and an antinflamatory every once in a while...  I do have issues with my ligaments in my neck still -working on those though!   Loving life, Tami K

Thanks Pooh.   My cloths are fitting a bit tighter.  I think that its just this summer of not feeling well and getting absolutely no excercise. I've got the classic middle aged beer belly and I don't even drink beer!!!!
For some of us...like me....food is a comfort.   I remember as a little boy when I didn't feel good or was crying my mother would give me a cookie to feel better.     Is there a cookie big enough now????
Steve

Steve,
The world is your cookie. You just gotta choose how to eat it!!!!!

Im watching the wait cause the pred munchies are hitting hard. As soon as the powers that be figure out what is going on in my body im at the gym doin a walk on the treadmill. I lost 5kg while i've been sick but the pred munchies are pputting it back on again. I am coming in to summer so im going to use the opportunity to try and drop some more weight. I've got plenty to spare if anyone needs some!!!!!


Congrats to those who are making inroads. To those that are struggling hang in there, your turn will come.

Pud

Hey! I forgot to mention on this thread -I had food allergy testing (blood test) and found out Iam allergic to milk, eggs ,halibut, pork, and turkey...  I have  been complaining of being bloated for years and now that I am avioding those foods, I am not bloated!! :)   I also feel better!  I had no clue - milk and eggs are in all the good things!  Cakes, cookies, browinies - ICE CREAM..  it was tough changing the first few days, but now it is easy because of how I feel and not being bloated! People keep asking me if I lost a lot of weight and I only lost a pound!  :) Tami K

It was definitely worth getting done! :)   

Hi,
Well I am still waiting on a diagnosis.  Went to the rheumy on 8/26 & he decided I needed to be tested again for some Lupus markers.  This was an expensive visit being that I had to fly from my island to another to see him for my 1st visit.  He then comes once a month to my island.  That came out negative so now I have to go back to the GP, who says I have the classic SJS symptoms.  So, since I am seeing a Naturopath Dr for my digestive issues, she comes to the rescue again.  Previously I was tested for hyperthyroid & since the tests were within the normal range my GP left it @ that even though I was having alot of symptoms including weight loss.  Anyhoo she tested & is treating me for bacteria, low stomach acid & leaky gut.  This is not cheap my medical coverage covers 1/2 of the office visit & I buy my own supplements, natural bacteria killer & vitamins from the clinic.  Good thing they cost less than half the cost of prescriptions & I don't have to deal w/ side effects.  I think it must be working because I am feeling lots better & if this keeps up, I may not have to go back to the rheumy.  :)  I'm crossing my fingers & praying.  I am hoping that I will start to pick up some weight, which will be the hard part because I cannot eat dairy & fatty foods & the liquid diet supplements give me diarrhea. :'( 

j-dry,

I hope you continue to feel better!  The cost of all this is staggering, especially when you add on the dental and eye docs!

Thinking of you and wishing for your wellness,
Janna

The money I have spent on my natural path is worth every penny! I think I have spent a lot more in conventional docs in my deductables!  :) Tami K

Quote from: Tamik on September 10, 2008, 10:24:11 PM
WOW POOH!!! WAY TO GO!!! :) 

I am commiting to a triathlon next year.  1/4 mile swim, 8 mile bike ride, and 2 mile run.  I can do this!! :)  Anyone want to train virtually with me?  I walked/ran 2 miles on the treadmill today...

Considering I could not move my right side a year ago, I am really excited!  My dystonia has not returned since starting my B12 shots! I am fully functional!! YIPPEEEEE!!!  I CAN DO THIS!
;D Tami K

congrats!!!!  Let us know how the training is going and for sure post about your Triathalon next year.  Get someone to take pictures!   ;D

Me too. I was a happy size 10 when I got sick in 1989 with Addiosn's disease, although the disease made me a sickly size 4. But the answer to Addiosn's disease is prednisone, I gained 15 pounds back within the month, which was ok as I was too thin. Since I have gained about 30-35 pounds and am a size 14. Not so bad considering the prednisone. But still I have always been a health concious person, not crazy helth concious but healthy like my size 10 on a 5'1" frame. I have been told so many times that the weight i now carry is a non issue by every doctor I complain to. It's not just the prednisone that changes the way a body motabolizes food but the additonal diagnosis of fibro and sjs that are the bug-a-boo. Toomuch pain and too much fatigue. Doctors just treat me like I should just be grateful I'm here at all. Myself i know I could not eat any better or any less it's the exercise thing. It hurts! :o I like to walk my dog allot but it doesn't get the caalories burning like biking, running that I could used to do. And honestly I fear the repocussions of just pushing on through and exercising like I used too. When I have in the past it puts me right down in all body pain, stiffness and fatigue, and for weeks. So I have just had to work on acceptance and I have done ok with that but what really hurts that process is the fact that they just don't make nice, comfortable clothing for a 5' size 14! I hate feeling like a frump in plus size clothes that hang off my shoulders and under my arms and the sleeves past my hands! Why is it so difficult for clothing manufactures to make something for me! I know I am not the only one out there that deals with this. Anyway any ideas about losing weight without pain? thanks, Sandra

Sandra,

I'm nearly your twin  :D I'm almost 5 feet tall and an unhappy size 14 - could be 16 soon. I'm trying to lose some of my blubber. I can't blame pred, but I have around 15 prescription drugs, some of which have weight gain as a side effect. I have also found that too much exercise - even only walking, knocks me up for ages. So, now I am aiming to do a 5-10 minute walk in my lunch time. It's not a lot, but its a start.

I can't remember if you are in the UK, but I went to a big Asda store today and noticed they have a new range of petites. Some of them looked really nice. I plan to go back and investigate, when I get time.

Kathyx

OK - I just ent to my rheumy...  my allergy testing for food showed that I was moderately high for  milk, egg yolk, egg white, and halibut.  I am malnourished because I have not been absorbing nutrients due to the allergy.  I am on many more vitamins now - and have to avoid everything with milk and eggs.  I don't eat halibut anyway... but no milk and eggs means brownies, icecream,  cake - CHOCOLATE...you get the picture...  I have lost 5 pounds this week -not even trying -just not sure what to eat!  I MISS CHEESE....  I am now at 133...  I am not bloated anymore which I love... 

Tami K

I am 5'4 and a size 12, 10 if they are cut right but I weigh 175 lbs. I know part of it is my chest and arms... I used to walk 3 to 4 miles a day... With my seizure I can't do that any longer and need to use a wheelchair. I am think of getting the Wii fit. I have seen some things you can do sitting down or holding on... Has anyone tried this?

Hey no one commented after I put my weight LOL!! I was hoping for some SUPPORT LOL!! j/k I have all of this skin on my belly from when I was prego with my daughter 16 1/2 years ago... I mean I can just pull the skin up while I'm laying down lol!!!

Michelle ...that weight sounds petite to me!   I'm 6ft and 240 pounds!   Sorry to hear about your seizures and wheelchair.   On that program of House this week the Sjogrens patient had a seizure.  Is that typical for Sjogrens?   
Steve

Tamik,
You mentioned a blood test for food allergies???  This used to be done with skin tests.  What is the name of the test?  I, too, have bloating and have gained several inches in my waist.  I only wear elastic, stretchy things now.  I'd like to be able to wear my old clothes .  Hope you see this.  Thanks, Tinker  :)

Tinker--Yes, there are blood tests for allergies but they are VERY expensive.  The allergist/asthma specialist I saw said that she wouldn't waste the money (my insurance money) on the RAST (blood allergy tests), but rather, we would do skin testing.  I have to bring in certain foods that they don't have on their list, such as eggplant, which is the only food that I know that I am allergic to.   

Each individual RAST test (blood) is very costly, although they do have some common RAST panels (such as nuts, dairy, etc.).  A lot of docs won't order the RAST blood testing due to the expense and the exhaustive list of tests, unless an anaphylactic reaction is suspect for a particular food or food category. That was the opinion of the doc I saw anyway.

If you suspect certain foods or food categories, they may agree to order the RAST blood test.  I don't know what RAST stands for........maybe one of the lab techs or nurses here does.  All I know is that my allergist mentioned it, but said that it was too expensive to do, particularly without many clues as to what foods are causing the problems.

Reenie

Thanks, Reenie, I'll look it up.  I knew someone on the board would have the answers.  Doesn't sound like something my insurance will approve since I've had every test in the book the last 2 yrs.and costs them lots of money.  It sure stinks bloating up like a cow after eating.  I don't seem to eat much but gain wt as I cannot exercise.  Gotta do something. 

I'm thinking of taking Alli since I can't lose any wt and if I start steroids (oh, please, NO) I'll gain lots of weight.

Has anyone ever tried Alli?  I know all about the side effects but I'm still thinking of doing it if doc says ok.

I am not sure of the name of the blood test  -  it only cost me about $100 bucks though if I remember correctly - it was ordered by my naturalpath (who is also an internal medicine doc so my insurance covered the rest of it....  The blood tests tend to be more senstive then the skin tests - which are not sensitive enough (according to my rhuemy) -the blood tests tend to overreact and the skin tests underreact...there is no ideal test - for example, I showed very high for milk, egg yolks, egg whites, and halibut -but also showed minor allergies to pork and turkey.  I may not really be alergic to the pork and turkey but could be just that the test was oversensitive -  allergies are autoimmune too...  I am feeling better -but it could take 6 months for me to feel the complete impact of avoiding those foods.  I chose to first be checked for allergies to foods I can avoid vs. taking the drugs suggested to me.  The cost of those drugs are more than the cost of the allergy testing was for me! :)  I hope this helped...  I am definitely not bloated anymore!  Tami Kruger

Absolutley,
When I first moved back to NE ohio,, I was finally in decent shape, I had lost over 30 lbs. Started back to work and school,, and found my self in 3 years almost doubling what i lost. I have been to sick to be able to exercise, or plan my meals. I work til 4:00 get home around 4:45, pick my daughter up from high school activity (whatever season it is, she always is into something). Finally getting home around 5:00, I am starved y then,, either I fix dinner,, someting fast that my husband will eat, or he fixes spaghetti, or we go out to eat. By 7:00 I am heading up to bed. Take my shower to get ready for the next day. Everyday is the same, By the time I have a few minutes to myself all i want to do is get into a nice relaxing bath and bed. My feet hurt and my eyes feel like they are ready to fall out of my head. My husband comes upstairs with me ,, we turn on the tv ,,I listen for a while and fall asleep. My days are all like this except weekends,, I get to sleep until 8 or 9, only to feel exhausted from the week. By sunday evening i am dreading the week again,, and looking forward to not working on the weekend. Pretty sad isnt it? What is one to do?
Teresa

Hi Teresa

I can understand having energy for nothing but work. Believe me, I have had many evenings where I have fallen asleep straight after dinner, only to wake up and go to bed. However, I have also had some good times when I have managed not to sleep until 10 pm and even, very occassionally, when I have had an evening out :).

The thing I have realised is that I now have to make decisions about what I am going to do with the energy I have. As I'm the main earner, that usually menas that work has to come first, and anything else is a bonus. Sometimes though, I will arrange to go to a social event and then book the following day or two off work as annual leave. That way, I feel that some of my needs have been met, without putting the job at risk.

I have been off work for nearly two weeks after some minor surgery, and am due to go back tomorrow. It has been wonderful having time to lie in at mornings and just plod along doing a few jobs and resting, so much so, that I'm dreading getting back on the treadmill tomorrow.  Although it will be good seeing my colleagues, I will be so relieved when my first day back is over.

Teresa, I hope you soon get some days when you can do more than work and sleep. Do you have any flexibility with your annual leave/wprlomg hours, so that you can pace yourself more?

I hope you get  some relief from the tiredness soon.

Kathyx

Hey there Teresa,

I am in amazement actually, I'm very proud of you and others here that can work with the pain and issues we have to face on  day to day, if not even hour to hour day.  I am sorry that you are so tired. I feel the same way and I cant do anything right now because of my back.  I need surgery so all of my joint/muscle pains are getting worse because I cant do anything.

Hang in there love!

This is the first time I've read this thread!  I see a whole bunch of us trying to accomplish the same thing, while we must take meds that cause us to gain weight.  I've been on Lyrica for a few months and have been eating through cardboard packaged and wondered why.  (not really)....I have nothing to add except something for us gals who are 5'ish and size 14ish as far as clothes that fit.  I buy a lot of Alfred Dunner clothes, or at least did while I was working. I can get most of this stuff in petite and it doesn't require hemming.  Alfred Dunner is not the high fashion we see on ELLE magazine, but most of us are not those size 3-4's either.  Alfred Dunner clothes can look a bit dowdy, but if you look around you can find some pretty nice stuff. 

I used to work with a lady my size and she always wore Alfred Dunner stuff too.  She then lost about 40 lbs and I'm not sure what she wears now.  Anything that can help me from hemming pants, or paying to have it done is a real treat.  Lucy

I'm a newcomer here and new to SS. Since I had surgery that put me into menopause I have been gaining weight.  Now the neurologist wants to put me on Neurontin.  I don't want to have to go out and buy bigger pants again.  I don't eat a ton either, so it just seems unfair.  I can't imagine what Neurontin or Lyrica will do.  I don't feel well enough to do heavy cardio exercise.  The only thing I do pretty much every day now is a combination of stretching, yoga and qi gong.  If I don't do this I am so stiff I can hardly move, but it is not enough exercise to burn any calories. :-\  I'm not tall either, barely 5'.  I hope I dont' turn into a bowling ball.  ::)

Terri

Hi Terri,
    I can't relate to the menopause stuff; other than to know when It's best to let my wife have her space ;).  I have been on Neurontin 300mg 4 times daily since 2004.  I have not suffered any weight gain, although my best friend, (he is also male) said it did make him eat everything in sight at least for the first few months.  He did say, that after awhile, the side-effect mellowed out.  As far as side affects go, this drug has very few.  It is extremely short lived in our bodies.  For most people the dosages taken today will be gone after after a few hours and in almost all cases it will be gone overnight.  I don't know if any of this is of value to you, but you may use this info to talk to your neuro about how or when to take your doses.

Thank you so much for the information Nad.  I do have a concern with how Neurontin and probably Lyrica too are processed through the kidneys.  I have serious kidney damage in one kidney and some reduced function.  I think there is some kind of chart the neurologist can use to gauge the dosage.  So, basically Neurontin increases your appetite?  Did you have any edema from it?

Thank you again!!!

Terri

    Terri, I had absolutely no problems.  I only experienced 1 side effect, that was for the first few weeks, I had some increased energy.  I didn't mention it because it didn't last long, and I wasn't sure if the energy just came from my pain level decreased.
    I haven't had any experience with Lyrica, but I had you don't find it problematic. 

Good Luck
Nadmcd
Dan

Thank you Dan!

I have problems with my back and am in a lot of pain. I love to walk and have wii fit. Now I can't even use the wii so I gave it to my daughter until I'm better. I have gained weight and feel like...SCREAMING!!! After I get the nerves burned in my back and the epidural blocks done I'm going to be WALKING!! Anyone have any advise for right now?? I'd really appreciate it :)

I have lost about 45 pounds since experiencing worse symptoms and remain undiagnosed, though have appt. with new rheumy in about a week.

I have mentioned the wt. loss to physicians and everyone of them has not seemed all that concerned, just nods and makes a note of it.  A month ago, I was hospitalized and on high dose steroids and other than gain facial wt. I only gained maybe five pounds and it's been about a month but I'm now down to 5mg just today.  Prednisone has always put the wt. on me and impossible to shed it.  A year ago, a neurologist took me off my 5mg of daily Prednisone and I figured that's why I was losing wt.  But this much wt.?   I also reduced Lyrica from mega dose of 900mg/day to 600mg/day sometime way, way back, and figured maybe that played a role, but I still continue to lose.

Concerned,
Karin

I hear you Karin.  I have lost 20 lbs. since the end of Dec.  Normally, I would be thrilled by that--before my tongue and swallowing issues I had said this is my year to lose 40 lbs. (also my year to turn 40!)   But this has come off fast and not in a healthy way.  Now my focus is not to lose much more.  Boost and homemade smoothies with protein and cream of wheat are my staples these days.  Yuck.  :(

I am tired of being fat.  Gaining 15 lbs. with no change in lifestyle has me baffled.  I can't exercise due to polymyositis and overwhelming fatigue.  Friday I am going in to have lipotropic injections.  My realtor told me about this and all the realtors in her office have lost lots of wt.  My friend has lost 20 plus lbs.

These injections are amino acids with B12. I already take B12.  I googled these lipotropic injections and can find no side effects.  My daughter just started this program and has lost 3 lbs and inches as her clothes are loose.

Gotta do something.  I will see a doc beforehand and have blood work and a complete physical. 

Sure hope this works.  I'll keep you posted.

I have been reading this with interest and noticed that a couple of people mentioned losing weight without trying.  This is a very significant symptom which I recently found out.  I went from a size 12 to a size 6 from August to December with no dieting or exercise.  My doctor said my weight was good but let's do an abdominal ultrasound anyway.  So I had one and followed up with a Gastroenterologist.  I thought he would just say drink Ensure or something.  But he said, "Now don't be scared, but the ultrasound showed a lesion on your pancreas."  I read a bunch of stuff and this can happen to people with Sjogren's syndrome.  I have to have a Cat Scan probably tomorrow to see what the lesion is.  I'm not scared but I'm having trouble sleeping.  Anyway, sudden weight loss in Sjogren's syndrome when you are not trying is a significant symptom.  If this happens you should see your doctor.
Kathy L.

My primary doc recommended  a complete physical, pap, and mammogram as I was due for one anyhow.  We'll see if that leads any further.  The rheumy was very concerned about the wt. loss and was going to call the GI doc. that did my upper GI.  Seemed way more concerned than any other doc so far.

People would say, "oh you've lost so much wt. you look great." BUT I feel awful, so wt. loss, and dropping a couple sizes, may look good on the outside, but it is not necessarily a good thing when you lose it quickly without trying.  If I were to suggest the pancreas cyst thing to my primary doc he would just dismiss me as reading too much.  I already suggested the kidney cyst from MRI finding and he dismissed any followup CT or ultrasound.

Karin

Hoping,
I know exactly what you mean.  People tell me they are so jealous about my weight loss.  But when I get up in the morning I have to sit down to take a shower and sit down to dry my hair.  I work and I sleep.  I have problems with getting full quickly and feel nausea.  I lost 20% of my body weight or 30 pounds.  It took until I reached a 30 pound weight loss before my doctor became at all concerned.  Hopefully it is only a cyst but unfortunatley if it is a tumor it has to be caught early.  The survival rate is abysmal if the tumor is malignant.  The GI doctor moved very quickly on setting up tests when he saw my ultrasound.  I feel like my regular doctor is not well versed in the complications of Sjogren's syndrome and I have to have a significant symptom to get any attention. 
Kathy L.