i start to feel really hungry and crave food then the minute i get food in front of my i cant eat it. i find it hard to swallow plus is i get any down i then feel full up ... then give it an hour and im hungry again and the same things happen ... which then i just cant be bothered to eat or perpair food as it just gets wasted ... i ve lost so much weight trying to keep warm .. i just look like a bag of bones really isn't good...
Hey was just wondering if anyone else... - Scleroderma & Ray...
Hey was just wondering if anyone else is having problems with eating ...
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I have scelroderma/raynauds and I have the same issues with eating. My doctors recently placed me on Ensure plus which is a food supplement. It helps the body get the nutrition it needs although I still haven't managed to gain any weight. You can ask your doctors to prescribe it for you and see if it helps you.
Hey Dimi thank you for you reply and i ve got the doc's on monday so will ask then .. the only trouble i have is that they dont really listern to me ... the just think oh its an eating disorder which its not as i ant to eat but i will see if they will give me ensure plus xx
As far as i,m aware its quite rare to get prescribed ensure, as they cost about a fiver each believe it or not. They tend to only give it to people who really cannot eat ie the terminally ill. I,m aware of this having been a drugs worker and working in GP surgeries for years, so, good luck!!
Hi inkedup thank you for your reply can you think of anything else that would help...
I have had a couple of occasions when I've felt hungry for my meal, started eating and then felt uncomfortably full after a few mouthfuls, followed by vomiting.
Have you had your oesophagus tested, as this is one of the areas often affected by Sclerodrma? I had to reteach myself to eat as I was virtually on a liquid diet a few years ago. Now make sure I chew everything solid at least 20 times more if possible is better,and I am able now to pretty much eat anything. I do also have ensure on prescription,which kept me going in the early days and has proved a godsend at times when eating is not an option i.e at work.
I always think smoothies or fruit milkshakes that you can make yourself are a good way of getting goodness/calories. You can put yoghurt, fresh fruits and add linseed etc, and its good for your skin! I couldnt eat if it wasnt for the esomeprazole i am prescribed for my reflux. Dont know what i,d do without it X
I agree with inkedup. Omeprazole has made all the difference. Drinking water with when eating has also helped. I do tend to try and have softer/liquid food, and certain things are off the menu. Other than smoothies and yoghurt, liquidized homemade soup is also a staple part of my diet. I am now at a relatively stable weight, although still on the thin side. Good luck.
thank you all very much for your reply's. I've got to doctors again on Monday so will speak with them about it .. Also one of my friends has opened up a juice and smothies cafe so I will be giving my self a few treats during the week. I'm also going to ask him to give me lessons on super foods and juices too .. And as I'm not having much luck at my doctors (never really get top see the same doctor each time .. so I'm going to book an appointment with a homoeopath.. :0)
Hi Dimi
I also have Scleroderma and Raynauds plus several others. The same thing always happens to me. I would be starving but as soon as I made the food I couldn't eat it. Had the best fed dogs in the area. I was put on Peptac and Lanzoporole and it has helped but mostly I just eat cereals like, Weetabix or Shredded wheat - with warm milk. Unfortunately, chocolate melts so I can usually manage that. I've had my oesophagus measured a couple of times to check in case it has narrowed but so far nothing. However, that was several years ago and as I'm due to see my Rheumatologist on Thursday I'm gonna check this with her because I've found lately that most 'solid' food makes me choke so I think there's something going on there.
Unfortunately, I also have: Arthritis, Asthma, Depression, Fibromyalgia, Hiatus Hernia, Insomnia, Migraine, Primary Biliary Cirrhosis (genetic), Raynauds, Reflux, Sciatica, Scleroderma, Sjogren's Syndrome and Telangiectasias - think that's all. Just after Christmas I had problems with my pancreas so hoping to get some answers on Thursday. I take 14 or 15 different drugs/day so I'm not sleeping during the day because of one of these then its the effects of the drugs I'm taking. If I could just sleep that good at night. I use a crutch not only because of the joint problems from Scleroderma but also from Fibromaylgia, Primary Biliary Cirrhosis or Arthritis. I also need a support for my left wrist. If I'd been a horse I'd been put out to pasture long ago, that's for sure.
Not sure if any of this helps but just keep going.
All the best ( M
I have the same problems and have had manometry testing which showed the muscles in my osophagus are not contracting so have swollowing problems. I get full very quickly when eating and my stomach seems slow in emptying. I'm having problems with my weight as well. I always have a drink while eating which helps and eat small meals, having gravy or a sauce helps. I find the best thing is to graze, ie. I take cerial with me to work and have at coffee break, something else at tea break. It isn't ideal but is helping.
Hi all
I have CREST, Reynauds, Sjorgrens, Hughes Syndrome and I had a colonoscopy and gastroscopy just over a week ago. The colon is fine but the stomach has an area of inflamation and some burnt bits by acid. I was told to lose weight, exercise and not eat chocolate, have decaf tea or coffee or coke. Not too much red meat or wine, more chicken and fish and sea food. No sauce on salad and not too much fatty food. So yesterday I ate sea food and fish and a little butter on the sea weed with salad. In the morning I had toast and a handful of popcorn at the cinema. I started to get stomach cramps and had a terrible time on the loo all night. I was told that swimming isn't helping me and I should use the cross trainer for breathlessness!. I sent an e-mail to the surgeon and said I don't think he took CREST into consideration, have heard nothing. So I find myself with stomach pains and not any better for putting myself through unnecessary prodding and poking, today I felt really down and wondered what the point of all this is as I worry about the future.
Oh and I forgot to mention, no apple or orange juice
You could be describing me! I feel cravings similar to when I was pregnant, go and buy what I fancy and then sit looking at it and feeling sick anable to eat it. I also am developing problems with swallowing and have to eat with a glass of water to "wash it down".Since Christmas I have lost 2 stone and feel really tired all the time
Love Suzy xxx
I am having trouble eating, mainly due to the fact I have no interest in food, but I do get hungry.
Swallowing has been a problem for a while now and I like to eat foods which are moist. Bread is always hard to swallow. I drink water with my meals if I cannot swallow, but never tea as it tends to blow me out.
i have Fibromyalgia, Sjogren's syndrome (which has main symptoms of dry mouth and eyes) and raynauds,arthritis and depression and anxiety.
I was eating like mad during the winter, now it's opposite since the depression and anxiety has set in.
Hugs to you all x
hey plumcake .. yep thats me completely ...i have gone off most foods now .. which is a same as i really need to put some weight on ..plus need the energy.. lots of hugs to you xxx
I have the same issues. I have lost so much weight I had to buy all new clothes as I was a size 4-6 petite I am now a double zero petite which is very hard to find. My doctor wants me to gain 5-10 pounds but it's hard for me to keep weight on. One of my meds causes severe diarrhea and nausea so I have to force myself to eat. I too drink ensure but it's very filling so then I can't eat. If I do gain a pound or two it makes breathing more difficult (I am on 4 liters of oxygen continuously).