Hi have just been diagnosed with lupus and am fighting a huge list of symptoms. I am Full of water retention and simply cannot lose weight. I have tried everything and am just at a loss at how I can get the weight off me. The only time I managed to lose 1/2 stone was eating the smallest amount possible. Such as half a sandwich for lunch, a few spoonfuls of porridge for breakfast and a tiny saucerfull of salad and fish for tea. No snacking and only drinking water. It was when I lost my appetite and was quite unwell and couldn’t face food. My appetite returned and I managed to eat properly. Am very small boned and was always lucky enough to stay a size 8 but I had a very good appetite and never gained weight. Now it’s the opposite I am piling on the pounds after just one meal I seem to swell up like a balloon and be full of water and end up looking like I am nine months pregnant. Am just so Allergic to almost every food I eat and have to either live on a very restrictive diet just to be half a stone lighter I just can’t understand why. I have trouble digesting food and I also have GERD. I take probiotics and digestive enzymes which give me some relief from tummy aches but I am at a loss to understand what’s wrong. I have symptoms of scleroderma and Sjögrens which will be looked at with my rheumatologist later next month. I long to be my former slim self and cry when I can’t fit in my clothes. My son tells me not to get upset as it’s clearly a medical condition that’s causing it. Has anyone had similar issues and could have any advice. I am getting married in 2 years time and am already fretting as am now a size 14/16 which is too much for my tiny frame. Am getting out of breath and every test at the drs comes up fine. If only I could understand what’s wrong I could try and get myself well. It’s got so bad I just go to bed fully clothed and won’t let my partner near me. It’s effectively causing relationship problems as I feel too unwell too out of shape and am constantly thinking why am I gaining this weight and swelling up like a pufferfish. I can’t get in my clothes. Drs have ruled out coeliac disease or thyroid problems yet an alternative therapist told me I am lactose intolerant, wheat and gluten sensitive Plus my thyroid and adrenals aren’t working. I have Candida and a whole list of strange reactions when I eat or drink. when I tell my Drs they don’t recognise the alternative therapies and tell me I am fine. It’s so frustrating and I want answers. If anyone has had a similar issue and is now well please give me what worked for you. Thank you everyone am very grateful for any advice and I wish you all a great week. 😀
How can I lose weight and water retention and can... - LUPUS UK
How can I lose weight and water retention and can lupus or other auto immune diseases make you gain weight.
I wish I could help but I am in a similar position to you. I had my colon removed 9 years ago and because my food whizzed through me I could eat anything. Then I got a stoma 18 months ago and despite my food still whizzing through me I have out on 3 stone and am now up to 13 stone. I keep buying larger and larger clothes but all my doctors say is how healthy I look now I have put on weight [idiots] I am now by NHS guidelines border line obese and at risk of diabetes. I wonder if it is one of my lupus tablets doing this. I am not on steroids but do take a few other things.
Thanks for letting me know. I really feel for you as Drs don’t seem to understand how we women feel about our looks and weight. No bloody wonder in today’s society with all the emphasis on looking good 24/7. It may be a lupus thing. I have been lucky I have avoided most medication within the last 10 years and other than operations where they have me some medication I haven’t really touched any. Am struggling on the lupus medication but am keeping on a little while longer to see if it will kick in. If I find anything that works on weight I will let you know. At least it’s a great weekend. Enjoy the lovely weather whilst it’s good. Take care. Elena
Hello! I’m sorry to hear that you are struggling with your weight. I can sympathise because I have piled on a few stones in the last few years and it does upset me sometimes. I too have a strange reaction to food.... my tummy swells up like a watermelon for no apparent reason and I used to get GERD.
The GERD I managed to stop by raising my pillows and taking a tablespoon of apple cider vinegar daily. I haven’t found a solution for the bloating yet unfortunately.
I guess one reason that I put on weight is that I am nowhere near as active as I used to be due to the fatigue and pain. Maybe that’s the same for you too? I also have Hashimotos disease which affects my thyroid and steroids haven’t helped much either!
The key thing to remember is that no matter how bad you think you look with extra weight, you are always going to be your harshest critic. I always have to remind myself to be kinder to myself.....I’m sick and nobody expects me to look like a model. My friends and family love me because I am me not what size my waistband is.
Big hugs xxxx
Thank you for your kind words words and am so sorry that you too have a similar issue with bloating and weight. Yes you are right I need to think that after all it’s the illness. Yes before I got I’ll i was well and I exercised was very active and did yoga which I cannot do now. Maybe it’s the gerd. I will have to do some research and if I find anything that works I can let you know. My friends son has hashimotos too and maybe I should look at how I can help my thyroid which is usually under active. I have just joined a leisure centre so I can sit in the sauna and steam room maybe that would help. Yes I must admit I find issues with the good so difficult as I can’t eat like a normal person due to the horrible reactions. The only thing that helps are steroids which help my asthma too. Will have to find a solution there’s got to be some kind of therapy or answers out there. I will have a look what’s online with a bit of look I can stumble across a solution. There’s some posts on you tube on how to tackle auto immune disease by diet and supplements I think I will have to test it out. I suppose I have to keep trying and cannot give up. I hope you have a great weekend and thank you again for your advice. Cheers. Elena
I agree - We are not as active due to joint pain, fatigue, etc
Try walking when able in shade....no sun, it will defeat your progress by eliciting flares🙄
Eating smaller portions and Lemon water ?
Water retention worse for me when flares😯😤😏🙃
Maybe Try "good" Massage Therapist to get body fluids moving again correctly and loosen fascia to ease joint pain. ( not a "feel good" massage, but from therapists that know how the body works with chronic illnesses)
That has helped me and enables me to walk more☺️🦋💜
Hi - I cut out sugar ! I am 70 and the weight slowly crept off me - like I was young and had a good metabolism! I have more energy and my clothes fit really well. Worth the agony of the sugar withdrawal - which only lasted 2 days - I don’t touch white bread and my bloating has gone! Slow but sure way to feel better. No bread, biscuits and sweets and check sugar content in all things - amazingly high - look for the carbohydrates content then look at where it says “of which sugar is....” no fast solution - you have 2 years to do it - it took me 5 months and I am an oldie! Good luck 😉
Thank you so much for letting me know what worked for you. Yes that sounds good. Will start now. Hoping to be able to get onto my clothes. Will cut out sugar and also wheat and dairy as I sometimes eat it and feel unwell. It’s got to be worth it. Have a great day. Elena
Hi Jeromicus888,
According to The Lupus Encyclopedia, people with lupus can experience fluctuation of their weight due to several different reasons including depression, medication i.e. antidepressants and steroids, metabolic disorders (over-active/under-active thyroid), fatigue and gluten hypersensitivity.
According to The Lupus Encyclopaedia, “It has been shown that people who have SLE can develop auto-antibodies directed at the thyroid gland, causing it to become either overactive or underactive”. When the thyroid gland is underactive, the individual is likely to gain weight. The NHS Choices’ website provided a detailed overview of having an underactive thyroid here: nhs.uk/Conditions/Thyroid-u...
Have you been seen by a dietician before? If not, you can ask to be referred to one by your GP. We published a blog article on lupus, diet and healthy living you can read the blog at lupusuk.org.uk/diet-and-hea...
To read our blog article on lupus and exercise, click here lupusuk.org.uk/lupus-and-ex...
Please keep us updated, wishing you all the best.
Thank you so much for yoir advice I didn’t know about the link with lupus and metabolic disorders and thyroid. For the amount of food I eat I should be about 7 stone. I have very little appetite and am not a big eater. I have had my thyroid checked at the drs they said it was fine but I saw a alternative practitioner at the same time who said my thyroid was barely functioning and said even if I was living on salads I would gain weight. Also he told me my adrenal glands and pituary wasn’t working or functioning very well. I took some drops he suggested and I lost half a stone but without the drops it was back to normal. I know it can’t be medication as for years I refused to take any tablets at all. It’s definitely giving me something to think about. Think I need to go back to the alternative therapist to get more drops. I must look up how lupus can effect me. I never got depression at all and was always bright and bubbly now I have hit the
Menapause I am always depressed. Thanks again for your reply and advice. Have a great day. Elena
Agree - I am a very "positive" person- but, Lupus causes our mental confusion & other mental issues...
When I feel good, I am mentally normal and upbeat.....can get anything done☺️
When lupus acts up it is like I have the Flu - whole body and mind out of whack😕 Lupus Fog really bad😩
I "know" to wait until I feel better .....and "give" myself time to heal or recover from flares - because it will pass😊🦋💜
I try to really enjoy my "good" days - but not overdo 🦋🦋🦋
Thank you for your advice as I now realise I have to wait till the flare passes and I then start to pick up. Thanks for that as I didn’t even think about how it comes and goes. Have a great week and take care. Elena. 😀
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