It is becoming so annoying! My weight is driving me crazy. I look like a fattened cow (lol). I try to loose it but it is impossible. I really do not exercise cos am too exhausted to start. Weighed 99kg last 2 weeks and today I weigh 101kg even with the fact dat I have early supper.
To make matters worse I sat in front of a mirror during my cyclo infusion. I had to call the nurse to take it away cos I cld not bear seeing my fat cheeks and droopy jaws.
When will it come off , if it does.
I can't walk, stand for long without getting sore knees and waist. I can't go swiming in this horrible weather. I may try zumba or buy an exexercise dvd. My problem is fatigue and consistency.
Thanks for listening
Xx
Ijeasike
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ijeasike
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Hi ijessike, I empathise with you totally. Reading a recent blog (Who is that in the mirror - 6 days ago) and the comments that followed we are not alone. I was diagnosed with Lupus in January and started on prednisolone 10 mths later and nearly 4 stone heavier, I feel as if I have been injected with water.. I have started to taper the prednisolone and thought the weight would start to come off but no sign of it shifting. I have difficulty breathing due to Lupus therefore like you I am unable to excercise much. This illness has impacted on all aspects of my life, I have isolated myself as I am ashamed of how I look and feel. It upsets me when I look in the mirror, in the past if I had gained a few pounds I was dieting and exercising immediately, now I feel overwhelmed by my weight gain. I have to buy clothes not because I like them but just to fit me, in the past I enjoyed clothes shopping. It has cost me a fortune buying different sizes. My husband is very supportive but sometimes I think I'd rather be on my own because I ruin his life as I have been unable as yet to come to terms with Lupus I was quite a strong person but now I am forever breaking down and crying which upsets me and everyone else. I realise there are people who are much worse than me but believe me it is so hard to walk in these shoes day after day. This rant has been brewing for a few days and now I feel a little better.
Share your feelings you really make people like me feel better as I have gained nearly 2 stone on being since been diagnosed in 2007. I was you our lupus experince is exactly the same. Head up and big smile the person you used to be will come back. I think people treat you differently when you are more curvy. The weight will come off have faith but check the rest of your medication some of mine have the same side effects as the steroids I have taped mine from thirty to ten mg a day. I stil have hope that I will lose the weight one day. Hugs and rant away sweetie we are here to give you cyber support x
I have similar thoughts about my husband, I feel I'm letting him down, I'm no fun anymore and I look dreadful. I keep waiting to feel better but just when I think aim improving, this dreaded breathlessness hits me again, I absolutely hate that. I'm isolating myself too, I was supposed to meet with some friends this evening, was arranged weeks ago and I was feeling great up until Wednesday when the chest pain started and progressed to shortness of breath. Where am I going to go now barely breathing, I hate this thing!
The weight will not come off by itself. You need to rememebr that your metabolism got very lazy and without the right enzymes and hormones working you will stay the same weight. Plus increaased weight means that you got new fat cells that will stay there forever (but you can make them shrink).. But this is why losing weight is difficult. Buying a dvd is a good start but you need to choose the right one. There are many fantastic programmes (e.g. Jillian Michaels) but they include exercises that put a lot of strain on the joints (especially the knees). ALso if you have problems with being consistent then you need to pick something that will not make you bored after a couple of sessions. Zumba sounds great though. Mind, once you start your exercise routine and kickstart your metabolism the fatigue will decrease too. SO it will get easier after 2 weeks or so. Plus when the weight starts coming off your joints will get better too. How does you diet look anyway? Maybe you can also change that too?
A piece of advice, if you want to lose weight, start now, don't postpone it becasue the more you gain the harder it will be to lose it...
Artemis - hi. I agree that exercise is good for people with lupus as well as so-called normals - but if anyone had tried to force me to got to Zumba or dance around to a video when I was in the middle of chemo, I'd have thumped them (weakly). I know it is OK for some people - but it can make you feel absolutely sh*t. I don't want to be mean - I know your advice is meant really well - but please go easy. Being told to make an effort when you feel that bad can be demoralising.
Well, Zumba was ijeasike's suggestion, if she wants to try it then I think it's a fantastic. As I said she needs to try what suits her best. I push myself to the limits (but I am very aware what my limits are) and I am on chemo and prednisone and currantly in a flare too. And I absolutely disagree with your last sentence. Making an effort when you feel bad means much more than making it when you feel great. And if it means doing just 10 min of zumba dvd exercises in the comfort of her own home than it's a great start. ANd she will quickly learn when is the best to exercise and when it's better to have some nice relaxing evening instead to recover. At the end it's a matter of attitute.
Maggie is right please kook after yourself it is important that you do work up to things like Zumba and any fast activity. Ask your remmumy or your lupus doctor for we are not expererts in this group so please ask a professional.
I am so so upset, ashamed, embarrassed of myself. I have got to the stage now i make any excuse not to go out, mix with old friends or meet new ones (something i have always loved to do)
i went xmas shopping yesterday and had a panic attack. Just feel huge, that i am the butt of everyones jokes etc.
I was 11 stone when I was first diagnosed and now 8 years later i am busting the scales at 17.5 stone!
Hi. I too was fed up with the weight gain from steroids. I had lost loads up till Jan this year, 2.5 stone infact. Once I started on the steroids I gained this all back on and a bit more and 5 weeks ago topped the scales at 13 stone 4oz. Since then I have joined swimming world and have lost 10lbs. Despite being on the steroids. It is just a case of food management and not mixing carbs and protein. The support group r fab. The leader is also a lupie so that helps. I don't exercise as I am too pooped, but have more energy for losing that weigh. It's so easy to follow the whole family are on it. I still have my lemon stomach, my rhumie says steroid users end up looking like a lemon on a stick, he also takes steroids. The only person who could help me was myself. Xx
it is hard isn't it - I'm not on steroids (thankfully) but still struggle to lose weight - at least I'm not putting it on! In terms of exercise, I go swimming. Our local pool has had a shallow 'staircase' put in with rails so you can just walk down into the water I guess others are the same so that's easier to get in. The other thing I do is yoga - I find it keeps my joints moving - if I miss a couple of weeks I certainly feel stiffer. Our teacher is very clear - don't do anything that hurts, and even thinking about moving that muscle will have a benefit - its very relaxing so good psychologically as well. Good luck to everyone on the weight front - just think, Weightwatchers have made a fortune out of us who lose weight but many of us need to go back again! It is a lifetime change, and with lupus on top - the hill just gets steeper to climb.
Hello.... I have good news. My last cyclophosphamide infusion was in July. Last week my steroid dose got reduced to 5mg. Withdrawal was horrid, but I am starting to feel a bit better (wait - there's more).
Before lupus I was very active, and swam 5 or 6 miles a week as well as going to work and looking after house children and garden. The last few years my exercise levels have dropped - sometimes to zero, and over the lupus-years (7 of them) I've gained 3 and a half stone.
Now, for the first time in 3 years I am beginning to be able to be more active, and at 5mg of steroid, my appetite is MUCH reduced. I have lost a little bit of weight (only a few pounds) without even trying - and I think that as the steroid dose reduces even more (early next year - I can't wait!!) this will increase.
You are right in the middle of cyclophosphamide treatment. Let's be honest: chemo makes you feel hideous (I know some people say it's fine - but it wasn't for me). Give yourself a break - now is about as bad as it gets, for you. With a little luck - chemo will work as well for you as it has for me and you will feel 75% better than you do now (not going to say 100% because that would mean no lupus at all).
Take heart - this is a short term situation - you can come back from it better and brighter and thinner than before!
Thanks dear I had my 6th course of chemo yesterday which I thought would be my last but apparently I will have 2-3 more courses bcos my lupus is still very active and was been give a lower dose of cyclo. It not easy but we will hang in there.
Hi Guys, I really feel for you all reading these blogs. I know it might be hard to believe but `ENERGY BREEDS ENERGY` I have had Lupus for 21 years so I know what u r all going thru, believe me. When i was on steroids i found out that it is not the actual steroids that automatically put weight on it is the reaction of them. Being on steroids has an effect on a chemical in the brain that tells you when you are full or hungry. Steroids cut that message out so you always feel hungry. I decided to change my diet right there and then,( having battled to keep weight off all through my teenage years) whenever i felt hungry after i had already eaten my ususal healthy meal i would have carrot/celery sticks, pieces of apple and drink alot of water to make me feel full and to fool the brain to thinking it had won. I also trained as a keep fit teacher. That is what i have done now for 18 years. It is all about finding the exercise that suits you. You have to find something that u enjoy. I teach mostly Tai Chi and QiGong. They are both gentle and very beneficial exercises Why not give them a try. It worked for me I was on steroids for 6 years and never put on any weight at all. The only way to keep weight off is to eat healthily (most of the time) and move the body. Go on folks give it a go you will never look back once you get into a new routine cos the benefits outweigh the effort. As i say in Tai chi class `Remember youre inner smile` x
I am 65 and up to going on steriods 25 years ago I was a small size 12, I went up to a 'tight' 18 and was ashamed to go out any where. I saw a new Lupus doctor (Thank you Dr.M.Akil at the Sheffield Halamshire) he asked me if I could swim and to just try to do 1 length.I thought No way am I getting a cossie to fit me and let people see my 'blubber'. I then went to a reunion of all my close teenage friends and one of the 'boys' (we had all know each other since we were 5 years old and all through our teens) anyway one said "Oh we can't call you skinnyribs any more (my nickname at school). That was IT. I bought a BIG swimsuit,went to the baths, so embarased I had to be lowered into the pool as I could then not walk well. And I JUST managed 1 length. The more I swam the easier the pain, so I swam every day. After a couple of months I thought I would go and try to walk a little bit on my own, just on my street and managed that. Each day I increased each by just a bit untill I was swimming 1 mile a day (I have my 2000mile award) and walking 6 mile a day round Rother Valley park twice a day. I joined Slimming World that a friend wanted me to go with her. I lost 4, yes FOUR stone and felt better than I had for years. Then I had to have Major Surgery on my spine and put Two stone back on. I have had to learn to swim again as You can't do breast stroke with two 8" Titanium rods in your back so now I am back to a mile a day, but am struggling to walk with my sticks. I have re-lost a stone but am deermined to make the most of 'me' and just keep trying to walk as I Hate this isolation.
GOOD LUCK to all of you, I know how you all feel,keep with it whatever you do. I have set myself a target - I want to dance again for next years reunion and I will be dammed if I am going to be the only one just sat there.xx
Wow, this is really inspirational, thank you for sharing, Hazel. I can't swim, I hate water and am not slim but reading how you've dealt with it makes me want to take up swimming tomorrow. I wonder if there are beginner lessons in swimming for mature ladies...
You can allways learn, get your doctor to refer you on health grounds, you don't pay and you could do Aquasize all done in the shallow end but the water takes most of the weight off your legs. There are over 50's clubs for learning to swim ask at your doctors about referal to the Healthy for the over 50's plan. Good luck. we are Never to old to learn. If I can larn back stroke at 65 there is hope for anyone.xx
I have been diagnosed with Lupus for 2 years now. Always had weight problems (of my own doing) and about 6 months ago decided to join Slimming World. I have since lost over 2 stone and put it down to being in control of what I eat whereas I cannot do much to control my Lupus. I do not do much exercise as I do not have the energy but certainly feel a lot better about myself for losing this weight and my husband and friends have been very complimentary. Although most overweight people like me think you may not eat much but it is down to eating the right things. If I can do it, anyone can. Best of luck. x
I went to weight watchers in 2010 because I was going to a family reunion in Jamaica. I went down a dress size which was what I had put on but by the time I got back after two weeks it was back and I just could not get motivated so after a few months I used Diet Chef, they supplied all the meals including snacks again I went down a dress size but my belly remains big as the steroids redirect the fat in your body to your belly.
At the moment I am far too ill to worry about loosing weight but when I am feeling well enough I will go to my GP to ask for the vouchers to go to weight watchers as I am told if you are over weighted the NHS will pay for Weight Watchers.
I used to go to a toning suite three times a week where the chairs and beds move your body for deep but gently exercises and this really helped to take the pain away and to keep me supply
This time last year I could not look in the mirror as the image I was seeing just did not look like me. I was having Cyclophosphamide and was given iv infusion of steroid the day before. I am having the chemo again now but have asked my Rheumy not to give me the infusion of steroid.
It only lasted for a few months, it just slowed down my immune system.
I have SLE, Mixed Connective Tissue Disorder with Pulmonary Fibrosis, the lupus has damaged the base of my lungs after having the chemo last year I was able to do more without becoming very breathless. I think it only lasted about four months before I was very breathless again. At the moment I have to have the telephone by my side and not rush to get up. I get breathless just talking.
Take care, blessing and I pray you will be able to to do the diet. xox
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sorry x
Should I bother the GP?
Sorry to bother you...
Weight !
Tried and tried to lose weight
