Weight gain with Sjogrens

[Helene]

I have been steadily gaining weight since I started suffering from flares and fatigue. The problem is that I can barely move around when I'm feeling bad. I put off weighing myself, but I have gained 50 pounds in the last 5 years. I've gone from slightly overweight to obese. I don't think I eat very much, but I get almost no exercise. I try to swim for 15 minutes a day. Walking is difficult because of neuropathy from a back injury. I'm taking Plaquenil, Naproxen, and Neurontin as well as Synthrooid and Fluoxetine. I hate the idea of "dieting" because I end up obsessing about food, but it's time to do something.

[quilt4fun]

Helene,
      I understand you're feelings.  Weight gain can be a real bummer.  I have gained some and have decided that I'm the only one that can do something about.  I encourage you to keep up with the swimming!  It should get easier the more you do it.    I have started walking early each morning, and now up to just over a mile.
       I also decided to change my eating habits (I'm not going to call it a diet!)   Some others with Sjogrens have said that going gluten free has helped with inflammation; so that's my second step.   I'll see how it goes, just started today; so I'll need some encouragement to stick with it. I even resisted that fresh donut at the Amish Market--sigh---
Jan

[jpd54]

I've had my thryoid checked and it is normal.  However, I have gained over 50 lbs.  I don't think I eat much, but I have trouble getting exercised because of the pain in my knees and legs.  I tried water aerobics but was told by my rheumy that was not good for my dry skin.  I always hear everyone else is losing on their meds, but I continue to gain.  It is really frustrating.

                 Jennifer

[amazonchick]

Same here ! I've gained 50 pounds also.. Just because I cant be as active due to pain and being too tired. I've never been an athlete either. I'm trying to eat healthier but that's easier said than done.. Just wanted to let you know, I feel your pain and you are not alone in this.

[Carolina]

Dear Helene,

I have Sjogren's and neuropathy, too.   

I recently lost 35 pounds attending meetings of Overeaters Anonymous.  It's the only thing that works for me, but it's not for everyone, that's for sure.

I try to exercise a bit longer in the pool.

I don't walk well at all, but I can use those variable resistance machines and also a sort of exercise machine called a Nu-Step, it's like a bike but you don't rotate your knees but push up and down, if that makes any sense.

I don't take Plaquenil or Neurontin.  I do take Aleve and Cymbalta, which do very well with my pain.  You can see from my signature line all the meds I take and the conditions I deal with.

Obsessing about food is the name of my game......which is why I need a 24/7 approach like OA which is based on AA.

Keep us posted.

Hugs

Elaine

[Helene]

Thanks for all your responses. I will have my thyroid checked again, but I think my main problem is that I am so tired and have so much pain that I spend most of my time in bed. My only exercise is swimming, but I am going to try to go for a walk tomorrow.

[Scottietottie]

Hi 

I have a weight problem also but I don't blame SjS I blame my thyroid. I desperately hoped that once the medication kicked in - the weight gain would reverse. It didn't. I don't think having SjS helps - because it makes it tough to exercise. Exercise hurts and fatigue sets in pretty quickly.

Recently I downloaded an app called myfitnesspal. It's free and I have found it helpful. It counts calories for me and it has let me know that I am NOT overeating. If anything - I am undereating. So the weight is not food alone.

I was really pleased to find I had lost some weight recently but my doc did a bloodtest and says my thyroid condition is being over medicated and I have swung 'hyper'. So I suspect I have lost weight due to that. I persuaded her to lower the medication minimally because I have never needed it lowered before and am scared stiff of going hypo again. I am due another blood test this month to see where things stand. The thing is - I feel better than I have for a while. Being hyper suits me! The weight loss is an added bonus.

She said herself that the levels have probably changed because I've been under stress. (Broken arm) It is healing now though - so the stress should diminish soon.

The broken arm has forced me to do more walking because I can't drive. That's the only exercise though - apart from physiotherapy.

Good luck. Try not to think of dieting so much as healthy eating.

Take care - Scottie 

[MirkeshCat]

I have gained some 20 pounds since SjS. Before I got sick I used to run daily and now I can barely move due to fatigue and pain. Hopefully I won?t gain any more... It?s very depressing because I used to have a really slim, trim and fit body 

[SjoAmy]

Always remember that inflammation in the body makes the body hold on to its fat cells.  The higher your inflammation the worse this process is.....compounded by corticosteroids.....so important to get inflammation down, or else the cells won't cooperate to lose weight. 

I read a GREAT book that explained this to me.....

The Immune System Recovery Plan by Susan Blum, M.D, M.P.H.
ISBN 978-1-4516-9497-0

Check for Thyroid Peroxidase Antibody.....thyroid can screw it all up, too. TSH level. T3/T4 free

[sjenny]

Always remember that inflammation in the body makes the body hold on to its fat cells.

My doc told me the same thing - that the body won't lose weight while cells are inflamed.

sjenny

[grammad97]

I think you will benefit greatly from swimming or walking in the pool. It gives you resistance without putting undue stress on your joints. Do what you can comfortably do. Lotion up after rinsing off from pool. I started using store brand baby oil gel daily and it has made a dramatic improvement in my skin.
The pool is more for your joint/ muscle health as movement is good for us.
I know you are concerned about weight gain and I think a look at thyroid;side effects of some RX may cause weight gain also ( neurontin) and trying the gluten free diet are all good ideas.
Many of us are gluten free so we can support you with tips ;recipes and brands of items that taste better too. Its truly been a life changer to be gluten free for me. I would be happy to help you!
Hang in there!

[Helene]

I am grateful that I can swim everyday, unless I'm too tired. It helps with the pain and my mood. A month ago I started taking Neurontin. It helped with my nerve pain, but I think it made me more fatigues and irritable. I decided to stop taking it for the next month to see if that helps or hurts. I'll also check my weight gain/loss for the next month. I don't know if I'm ready for gluten free, though I'll consider it.