Loss of appetite

I have trouble keeping weight on and sometimes go lower than I like or is good for me. I have swallowing issues which means what i eat is limited, and how long it takes is ridiculously long. I often just get bored eating as it's such an effort. Visit a nutritionist who will help you get the most number of calories in the easiest and quickest way. I started by adding milkshakes loaded with hospital strength Sustain and ice-cream. I "hate" milk but have managed this easily once a day. Also a good, general multi-vitamin daily. 

Anything pureed/juiced (but not all fruits as too much sugar), smoothied etc is great. Eggs are my friends too. I have my at-home foods, my eating out foods, my eating with 1 friend food (can't talk lots and eat super slowly at the same time) my eating with a big table of friends foods (less chat so can eat slowly) etc.........vary your diet according to the situation and time allowed. Annoying, but doable.

Oh dear I am sorry to read this. I have problems swallowing food too.  I drink with every mouthfull. It is easy to get out if the habit of not eating/ avoiding food.  Try eating small amounts each time. Keep a note if it helps. Meat is my hardest. Food which I cut up into tiny pieces. I had a burger in a situation bap. It took me a very l long time to eat it. My tongue was sore as well. I do eat naughty chocolate and cream cakes!!!  Truffle with fruit in. If you lost all that weight take to your dietician.   They can give you a high protein diet sheet. I do hope you  put a bit of weight on soon. If I didn't drink when I eat I wouldn't be able to eat either. Understand how you must be feeling xxx hang in there xx

Hi Nu2this.....Like you, I am new this and your discussion caught my attention because although I still haven't had an official diagnosis (SS or BMS according to the oral surgeon who has since discharged me from his care!), I have also started to experience difficulties with eating and within my previously healthy appetite. I fluctuate between mouth like sandpaper and mouth like gloopy mud bath but my tongue is permanently sore and just recently, have noticed that the physical act of eating is becoming harder, partly because of my sore tongue, partly because of dryness, partly because of excessive gloop and partly because of tenderness in my throat. I have hijacked your discussion, purely because I'm hoping to learn something myself but also to let you know there are other newbies and we're all on this journey (or trek) together. Good luck with everything, I hope you get some peace of mind back.

 

Hello everyone. I can eat, even all the comfort foodstuffs, but suffer when I do! Dry and crispy things are problematic and I now cut crusts off bread. Raw tomatoes give me ulcers on my tongue. That took a year to find out, and it was before my SS diagnosis. I defo cannot have pepper ( cracked type) nor any spicy foods. 

Stressful moments dry my mouth up so that I reach for chewing gum, a drink, or I end up choking. Even just the thoughts rather than in conversation, can do this.

 I have recently started using yogurt. I put a fruit fat free yogurt on porridge ( made with water), and recently on baked fish. This may help to vary things for you.

Do you belong to any SS organisations? Here in the U.K., the British Sjorgrens Syndrome Association has often helped me. They have a help line, and useful information is available.

keep smiling - remember SS is life-limiting, rather than life threatening xx