Sjogrens Syndrome swallowing problems.

[bp21]

Hello everybody, I have recently been diag with SS to complement my existing MS and this was discovered whilst investigating my ten years of swallowing problems.

Whilst many people describe swallow difficulties, mine occur both with coordination of the swallow due to the dryness but also down in the oesaphagus where food lodges and has remained for up to 24 hrs (accompanied by vigorous dry reaching and dehydration).

This has often had to be resolved by removal of the food under anaesthetic. My medical professionals appear divided in their opinion on the relationship between this condition and SS as there is little documented evidence of food blockages requiring removal assoc. to SS.

If anyone has similar experiences with SS I would love to hear from them. Thanks

[andi93]

Hi there, sorry to hear about the situation.

I have been diagnosed with SS for one year and have difficulty swallowing and food going my oesophagus. I too havent read much with its association to SS, but as we all experience dry mouth, my specialist tells me it is becuase of that. Have you used any artificial saliva? Ive tried it before, and it helped a little maybe that can help with the excessive dryness.

Hope this helps, good luck with everything!

[bp21 in reply to andi93]

Thanks for that andi93, hope you're going ok with your uni and things.

[anhydro]

I haven't had such severe problems myself but I did read one piece of advice which may help. That was to take a small serving of something such as ice cream (not sorbet), yoghurt which will 'coat' the oesophagus and help food to slip down. I find that pills go down better with a 'thicker' drink or something like porridge. Try it.

But it may be coordination problems due to your MS. An extreme way of dealing with it is liquidised food but texture is part of the pleasure of eating so maybe a bit of mix and match.

Good luck

[bp21 in reply to anhydro]

Glad to read your advice anhydro. I eat many litres of ice cream and I've always got the excuse that it goes down easily. BUT i have never thought of a spoon or two before a meal to coat the lining of my oes. Another great excuse to eat ice cream.

Thanks very much for that.(Notice I ignored the reference to porridge and went straight for the ice cream).Good luck with everything.

[BeccaJane]

I have been diagnosed for around 12 years and have this issue with swallowing. I cannot have a meal without a drink beside me and it is important to take small bites or risk it getting lodged. Sometimes I have to take a drink while swallowing the food or sit there gulping trying to get it down. Good luck with finding a solution.

[DJEUSA]

My mouth gets so dry that I carry a water bottle everywhere with me. I also just started to have some trouble swallowing after 20 years. It does not get stuck but I need fluids to help or it just gets uncomfortable when eating. I also use Biotene toothpaste, mouth wash, and gel to restore some moisture and I hear there is a RX med also - but I have not tried it. Hydrating myself seems to be important for me. I also chew gum to stimulate saliva, and eat fruit ice bars ( popcicles ) which soothe my dry throat. My present Rheumy noticed my water bottle and my frequent use while talking and since my blood works for Lupus ( which was my diagnosis from a previous Rheumy for 10 years ) were negative so he suggested that maybe I did NOT have Lupus. He sent me for a lip biopsy to confirm and it was Sjogrens Primary. So it suggests to you how much water I do use to quench my thirst and dry mouth symptoms. I even wake through the night for a drink - especially in the Winter months when it is freezing outside and the heat runs constantly to keep the house warm. I also have a Humidifier attached to the forced hot air heating system for the house which helps also. It took me awhile to piece together how to manage the dryness - sometimes a real pain trying to keep up with it all. I still look for new information and ideas. I also switched from coffee to decaf coffee and now to decaf Green Tea. I have no idea why the Green Tea seems to help my dry throat either - but it does. It seems odd the way the body responds to the strangest things I have found since I started with this Syndrome and other Immune problems. I hope this is of some help - Best Wishes - Take Care - Diane

[Sjogrenssucks in reply to DJEUSA]

I got diagnosed with severe Sjogren's a bit over a year ago and was dealing with all you described. Add severe fatigue and memory loss to the list. My doctor has me on pilocarpine 5 mg tablets 4 times per day and it has made a world of difference with the dry mouth and memory issues. My eyes are still super dry - especially at night GoodRx was the best price for the drug. Good luck -- this is an endless battle, for sure!!! I am going to try the Green Tea for my swallowing issues. Sjogren's Sucks!!!

[Bobbilou in reply to Sjogrenssucks]

I had my lower tear ducts cauterized and that helped a lot.

[Nousernames]

Yes. A few years ago I was in having an upper GI and the doctor found a pill that was stuck in my throat/ esophagus.

SS has allot of health issues that most people are not aware of. Even my rheumatologist.

I wish you the best.