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Bothered about looks

I was a size 12 but now i am size 18 and my size goes up and down becos of my swellings and water retention. it is really annoying cos it not fat it just fluid. I really cant recognize myself in the mirror, i wake up some mornings and my face is swollen, i cant wear shoes cos of swollen feet i wear crocks instead(not fun at all). I take bumetinde twice a dat to help shift the fluid but it is slow but i wee frequently am even on water restriction. I cant go for social activities bcos i dnt look the same am not comfortable in my skin (cant take pictures). Is anybody effected by this too

29 Replies

Hi, I was diagnosed with SLE/Fibro in 2000 and have had several courses of steroids and am on lots of medication. I went from a size 10(at age 36) to size 18 now (age 48). I am still not 100% comfortable with this but when I consider the alternative you eventually come to realise that their are much worse things than weight gain. I am not trying to trivalise how you feel because I know, I have lived it. People with our type of problems are all incredibly strong people (even though we might not realise it). We have a capacity to get on with things so we do. I have lost a family member to SLE and it didn't help matters that she lived in a country where all medication had to be paid for (she couldn't afford much of the meds she should have had). So continue to be strong and make the most of who you are because that is what and whom those around you love not just the way your look. Hope this helps.


thank u Alexandria it does help


i have put 2 stone on and was a 12 and now 14/16 and used 2 be 1 of those ppl whe could eat wat u want and never put weight on and ,now i do strugle i am on lots of meds now including steroids and av under-active thyroyeds so that doesnt help .dont put ur self down u are who u are u are the same person who u befoure u put it on xxxx


thanks gummy


I gave this printed on a large carrier bag to a friend of mine.


If I hear one more person say:

1. but you don't look sick

2. everybody gets tired

3. you're just getting older

4. if you'd get out more

5. if you'd get more exercise

6. if anyone offers any more unsolicited medical advice whatsoever

I will NOT be responsible for my actions.

on the backside of the carrier bag it read...


Google it.

Your post has inspired a new one:



on the backside





What do you think?!? HA!

SLE makes me underweight. Go figure.

Withdrawing from social situations drives patients into isolation, depression, and immobility. Best to be avoided if at all possible. Try to think of it this way. You receive and invitation. Interpret this as "I really want YOU AS YOU ARE to attend my event."

Let it be known that you are PHOTO SENSITIVE. Literally.

Or ...

Have a Black Out Dinner Party! (I know that this is an ambitious concept.)

No one can see anyone else or even their food. It's a unique way to break down visual barriers.

Invite mates and instruct them to bring one of their mates you don't know.

It is a technique that many blind associations are now using to provide awareness ... why can't Lupus use it to do the same?

Swollen feet is a bother for many.

Google 'wide and extra wide women's shoes' for possible other options.

Diabetics have similar issues with feet as SLE patients. Google 'diabetic shoes' for possible other options.

SLE affirmations...

I am a survivor.

I am a SLE warrior.

Carry on strong.

Do not let the turkeys get you down.

Be the wolf. Eat the turkeys.



Hi ijeasike,

I know exactly how you feel, read my reply to Krisdy. Take care


thanks alot u sure are a survivor


u really put a smile on my face.


When I read your post, I had to do a double take and check I had written it! Size 12 to 20, admit it's not all fluid now, I can hardly walk some days have ben unable to go out cos i can't get into any of my shoes. I don't burn any calories, I fractured my pelvis last year, then my right foot, then had Bakers cysts rupture behind both knees, so much fluid, I look in the mirror and my body resembles someone who has had a hosepipe inserted and the tap left on!

I know I dont like what I see and I hate how I feel, but i'll be damned if i'm going to hide away to make others feel comfortable!

I might not look like me, but I still feel like me...I start Lighter Life in two weeks and hope and pray it works, I want to be able walk into a room and look well, even if I don't feel it. I want people to see me first, not Lupus.

I so understand how you feel and hope and pray you find a way to feel good about yourself again soon.

Hugs and best wishes.



thanks Rosie. xxx


It is a hard one I have struggled to keep my weight down lost 2 1/2 stone and was praised by my consultant to be shoved on medication that promptly put it back on!


Yes me too.... Same old story etc. etc. I used to be a personal trainer. Wear whatever I wanted blah blah!! But as everyone else has said I'm still me even though I now look sooo different!! And I have found that I have nicer, kinder people around me now!!

Also have found that anti inflammatory foods like nuts, especially almonds, avocados, oily fish, basil, rosemary, turmeric and cumin can help me a lot.... If I stick to a restricted diet for over a week and continue for another week there's a considerable difference to my fluid retention!!! I totally understand that it's only a temporary improvement but as the saying goes, every little helps!! Hope that helps a little bit!! Be kind to yourself!! Xx


it really does help, about tumeric i used to take it but i had to stop now cos am on walfrin and read it cant be combined cos they do the same thing. I will try the almond,avocado etc. i also take green vegetables blended together (a portion a day). thanks for the tips,xxx


Nutrition plays such a vital role in the inflammatory process. Feed the need. Fuel the body not the disease. Do what you can when you can. Stay as mobile as is possible.


All thanks to my mum she make sure i eat enough fruits and vegs. i try to walk cos some mornings i have so much energy it is hard to seat still.


Three cheers for ijeasike's mum!!! Three cheers for ijeasike!!!

Everything in moderation. GO GO GO.




I just noticed you wrote that you were using Rx Warfarin.

One of the negative side effects of Warfarin to be aware of is swelling of the face, throat, mouth, legs, feet or hands.

Consult with your doctor/s ... your body might not be tolerant of the Rx Warfarin.

Take care of yourself.


the swellings where there even before i started warfrin. my doctor had to place me on it cos of the cyclo and am at the risk of blood clot. but my blood is at 1.3 it needs to gt to 2.0-3.0 as they said.


Good that you and your doctor/s are 'on it'.

With so many symptoms sometimes one falls through the cracks. Fab you have such competent medical care.

At an increase of 0.1 per day ... within 7 days you could be at 2.0! 0.1 is a wee wisp of an itty bitty bit. Will power it forward ije.

Support surrounds you. Take comfort and have hope.

You can do it.

May you be well soon.


thanks dear! wish u the same. we will all move forward together by the Grace of God



Really sympathise, in the same situation. I gave birth 3 years ago and piled on the lbs. I used to exercising regularly, but since giving birth have injured something or been in pain due to lupus. I know for a fact that exercise - if you can manage it - really is the best therapy, I am determined to get back into shape. Not just because of the weight issue but how much better I feel in general. Am on pain killers and going to go back to docs for physio if it does not improve. I know it is difficult but keep trying to find something that you enjoy that gets you fit, cut out the sugar and salt and some fat. Drinking 2.5 - 3 pints of water each day can really help too.

Heres to the struggle! x


To ijeasike:

I am certain you are well aware of this but : when on a WATER RESTRICTIVE DIET - as many Lupus Nephritis patients like you are water restricted - patients MUST follow the doctor/s orders as drinking more water than prescribed can be life threatening. Avoiding fluid overload is very important.

Take care. Be well.


i feel better now am on fluid restriction cos i could bearly move before cos of the weight but now its shifting off.

thanks dear




Well done ije.

I am happy for you. Forward momentum. A good thing indeed.



thanks Melly i drink less than 1.5 a day and it has helped.

hugs and kisses



I’ve been a large girl and throughout my school years I suffered from daily bullying. By the time I was 19, most of the fat was gone and I lived as a thin girl (size8/10) until the age of 34. (Of course in my mind, I was always fat and I was always trying to lose weight.) Suddenly I begun to gain weight and become swollen. A few months prior to being diagnosed, an old hag I have for an aunt, very ungraciously, told me that I looked good with all that weight I had decided to put on! I was eight years old again, being bullied, I was overwhelmed with the exact same feeling. So, after the diagnosis I was thrilled to spit in her face that “it is not fat, it’s Lupus” (in Greek it rhymed perfectly, fat = Lipos / Lupus=Lykos).

I will always feel bad about my weight. I rarely go out now and I only wear black. So, you're not alone.

Glad you're feeling better. :)


Hi There!!

I too suffer from water retention. I used to do a lot of exersise when I was younger 14 - 24

Instructing in karate, cycling and swimming and my weight kept at a constant 12/14.

Since being diagnoised with lupus my weight has fluctuated and am in a size 16/18 AT THE MOMENT. So Don't shut your self away and if you are invited to things try and go you may have a wonderfull time!!



Thank u Sabina


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