I have a horrible feeling I've asked this before but here goes: I have limited systemic scleroderma and have lost a lot of weight, so I'm now only 7 st 2 lbs (46 kg). Yesterday I had a phone consultation with a dietician who said I am actually malnourished which is making me exhausted and weak and with some muscle wasting. She prescribed an Aymes shake supplement drink, two sachets a day for two months. I am finding it difficult because after I drink one of these I can't face my usual "extras" like yoghurt or bananas or more biscuits, or whatever (I really don't like milk, which doesn't help). So my total calorie intake isn't as much as it should be.
The dietician wasn't even convinced it's the SSc which has caused the weight loss but a negative life change which happened around when I was diagnosed. Or a combination of the two. Whatever the cause, the result is the same – I somehow need to gain weight and regain energy.
I'm really looking for tips, similar experience, sympathy etc! 😆
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volvox45
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Sorry to read about your weight loss. At 69 I assumed it was just ageing. Muscle loss is the most frightening. I eat well on a balanced diet. I was always slim but muscular from football and athletics.
It’s the rapidity of the weight loss which is worrying. So I was tested for lymphoma and cancers all of which are thankfully negative. Beginning to assume scleroderma is playing a role.
Try a good protein powder from a health shop mix with some milk or iprefer sugar free fruit juice add a banana or some frozen fruit and blend to smooth
SIBO can also cause weight loss and I’m almost certain it’s scleroderma causing this. Do you see a specialist gastroenterologist? There’s a good one at Birmingham QE and The Royal Free. They would be the best bet in the first instance but this needs looking at quickly.
Yes, SIBO was diagnosed at the Royal Free in their specialist department in 2020 and I was promised annual reviews, but I haven't heard from them since so I'm rather disillusioned!
I too, have the same problem. I've just been prescribed the same nutritional shakes and a lo fibre diet. It's not looking hopeful but will let you know how I get on ,
Oh lord, do I sympathise. . I’ve been struggling with this for a couple of years. It doesn’t help with SIBO you need to modify your diet although I sometimes wonder why I bother as seems to be so hit and miss. I never tried the Aymes shakes as they had so many additives. I also put lactase in my milk to get rid of lactose as supposed to be a trigger along with wheat of course, but I eat proper sourdough. What I find odd is even when my digestion is not so bad in the odd weeks I manage without antibiotics, I still can’t put on weight. I think seeing a specialist gastroenterologist is a good suggestion and will be my next move. It’s good you have been referred to a dietician. My gp has not suggested this despite weight loss. I did try to find a scleroderma specialist dietician privately but cannot find one in the UK.
Re the muscle wasting, I do think a walk every day can help when you can. Obviously some days I can’t but even when nauseous it helps. I’ve stopped weighing myself as it stresses me out.
Good luck and I too will be fascinated by your progress!
Thank you for your reply! My GP didn't suggest a dietician either, and nor did the gastro consultant, it was my idea, and when I asked the GP to refer me she said good idea!! and I thought, well why didn't you think of it then? We do have to be so vigilant, don't we? The dietician was really helpful and encouraging (she knows about SSc) and I'm so glad I'm seeing her.
I got down to 58kg, much to my and my GP's horror. She prescribed 200ml bottles of Fortisip fluid. She said to see it as a supplement, it was important that I ate my ordinary food and then had the Fortisip at the end of breakfast and dinner.
I would eat then leave a bit of room in my tummy for the Fortisip. It was hard work as I was concentrating on trying to get it down. I decided I needed a distraction so I wasn't concentrating on drinking. I got onto Facebook videos, they are usually about 3 to 5 minutes long and I watch them while I suck the fluid up with a straw. I have watched dogs being rescued, brides choosing the wedding dresses, people trying out gadgets etc etc, anything to take my mind off drinking. I usually have an uncomfortable tummy which goes away after a wee while, but I do get the Fortisip down. I am now up to 62kg.
Well done Heather! Fortisip sounds much the same as Aynshake etc (actually at the moment I am using Complan till my prescription turns up) so if it works for you that's so encouraging! I shall aim to get "up" to 58kg which is about the most I've ever been in my life. I'm not enjoying the supplement drink but I'm loving being told to pile the peanut butter high on my toast!
thanks for posting this interesting question. there are a few people who have this problem it seems. I have always been slim but am somewhat concearned about now being 42 kg (Im 65). Just been discharged from local gastro as having mild dysmotility esophagus. I eat nourishing food, not faddy, although I'm a slow eater or food just sticks. A dr at the Royal Free (where I go for UCTD etc.) said it was malabsorbsion ....so I continue to eat well and try not to worry about it. Halfway uphill makes a good point - I was weighing myself too often and it stressed me out.
Thank you, Maggie. You weigh even less than me! I don't like being matchstick thin, but even worse, I don't like feeling exhausted and wobbly all the time. But after four days on Complan once a day (till the proper prescription turns up – if ever) I actually feel better, I can't believe it! It's just a way of getting 330+ additional calories into yourself really quickly – it's not nice but my body says yes please! Perhaps you could try it? Like you, I try not to weigh myself too often so will wait a couple of weeks and see if there's any difference.
Hi, I'm glad to hear that you are feeling better, well done for chugging down complan. I'm eating up ALL the xmas chocolate nuts and cheese! I don't look too bad considering my wt, I am small boned. however, going from BMI of 18.5 to 16 isn't ideal at my age....... Good luck x
I have lost 1.5 stone and recently had a barium meal X-ray which showed oesophogitis - the real diagnosis l forgot - but it is a symptom of systemic sclerosis. Apparently crusts on bread and starchy foods should be avoided. I have just been given anti sickness medication via my rheumatologist and am managing to eat more and it makes me feel hungry at last. I have a first appointment with dietitian next week. I have also started physiotherapy to improve my muscles and joints.
Have you tried adding some healthy fats to your diet, like olive oil, or walnut /avacado oil? As well as cooking with it I have added olive oil to protein shakes, porridge oats, salads etc. Oil has lots of calories.
Thank you Andy – that's exactly what the dietician suggested – you've missed your vocation! She said I can add olive oil (which I love) to rice for instance. After two weeks on her suggested regime plus Complan I have miraculously put on 3 lbs. I am very pleased and motivated. I have another consultation with her in April and looking forward to reporting my success to her! Hope I can keep it up…
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Weight Loss and Systemic Sclerosis
How to get diagnosed?
Update on how our meeting went. 
