Sjogrens problems

[Sadiemay]

Hi I am new to this group, I am interested in hearing others experiences with sjogrens and fibromyalgia. How to deal with sever swallowing problems etc.

[weathervane]

Hi there , i also have sjogrens but have not really experienced any swallowing difficulties but i do have a glass of water with all food . I have read other posts which mentioned problems and the person could only eat softer food but i can remember who wrote it . May be if you use the search facility on the right side under more . Best wishes 🌸🌸

[Debbweb01]

Hi I have trouble swallowing! I find when I put my head down while eating helps! I really chew meat well! My dry mouth and , burning tongue, mouth sores and now drooling! It seems lately my saliva has rerouted itself! I'm also new to this forum! Welcome! I'm from USA

[Sadiemay in reply to Debbweb01]

Hi, I am also having a major swallowing problems. I have given up on eating any meat. I have, because of the sjogrens, lost so many teeth I can't chew correctly. I most times while I'm eating, have to stand up and walk around to get food to go down. The pain in my throat, chest and back is horrible till it goes down. Everything about this disease sucks. I wake up 2-3 times a month with corneal abrasions, I am getting very depressed over the amount of time that is waisted trying to "feel better" sometime I feel that since I'm no spring chicken that time is not something I can waist. What, if anything, works for swallowing issues for you?

[Debbweb01 in reply to Sadiemay]

Yes I don't eat meat much anymore either! There's lots of people on here that have helped me! Read the forum and ask questions? I've found out many little tidbits of self help on here! I have GERD also so that don't help! I hope u get good info as I have on here! Are u from Australia?

[Sadiemay in reply to Debbweb01]

Thank you! I also have reflux my doctor says that is why I'm having loss of my voice most days. He claims even though I don't always feel it. I do plan on asking lot's of questions te drs here aren't very knowledgeable about sjogrens, it's very frustrating. No I am from USA, have for as long as I can remember, wanted to travel to Australia. My grandson says he's going to live there one day.

[Hidden in reply to Sadiemay]

Hi - sorry I'm late coming to this post. I live in Scotland so it might be called something different - and prescriptions are free up here so no idea how much it costs in the USA. But I'm prescribed Ranitidine (Zantac trade name) max strength (300mg) daily and this has really helped with my longstanding dry cough and swallowing issues. I also am on Cellcept/ Mycophenolate max strength for my high inflammation levels which cause neuropathy and tendinitis and I think this might have helped too. There are systemic treatments for Sjögren's such as Plaquenil, Pilocarpine, methotrexate etc - you may have to push hard for them though as I have done. Sjögren's sucks I agree!

[nancarolyn in reply to Sadiemay]

Would like to chat about your swallowing. I have been social situations in which I started choking because food would not go down. I take omneprasole everyday and it helps. Still have problem, but not nearly as bad.I cannot eat steak well at all. What are the corneal abrasions caused by? Take care.

[Debbweb01]

Awe I'm from New York! I have secondary SS! It's weird how doc don't know much about SS cuz it's not uncommon! I have reflux and I think lots of people with SS have GERD! I rad an article on it! I'll try to find it! It came from John Hopkins! I googled Sjogrens and autonomic neuropathy! Also someone on here gave the link! Very informative!

[Sadiemay in reply to Debbweb01]

Thank you!

[Debbweb01]

It's Hopkinssjogrens.org

[Beverly]

Welcome to the group, with swallowing I have gravy with all my meals and if I'm eating a sandwich I make sure I have tomato or mayo on it and always have a drink handy I always have a glass of soda water so if you start to choke the bubbles will push it down.

[Sadiemay in reply to Beverly]

Thanks for you for your tips for swallowing issues. I cannot however swallow bread and because of my reflux, cannot drink sodas. This stupid disease has caused me so many problems, I can't even count. I am sure there are many worse off than me and I am grateful for the good days. I am not doing so good right now, having a hard time with just being awake.

[Beverly in reply to Beverly]

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Lupus Nephritis stage 4 ( kidneys) 10th February.

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Black Seed Oil Update. 8 th June.

I have found the Black Seed Oil good for mouth ulcers, I put it in one day and there gone the next, I got a small bottle with eye dropper at the chemist, I also use it to unblock my sinuses 3 drops in each nostril. It's great.

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My swallowing is a lot better I no longer have to have buckets of gravy on everything.

[Persiankiwi]

I have a lump feeling that something is stuck in my throat, sometimes gag on nothing, reflux, vomiting, don't eat meat & feel full when only eaten a yoghurt or small tin tuna. Immune now sending me to neuroimmunologist as thinks could have Myasthenia Gravis as also have breathing problems especially when laying down

[Sadiemay in reply to Persiankiwi]

I am so sorry to hear your having such a hard time. Hopefully the new dr. can help you with your swallowing issues. I only get the lump in the throat after I've eaten something solid. Baby food goes down easiest for me with LOTS of liquids. For your breathing, can you sleep with pillows to prop you up?

[Megansheart in reply to Persiankiwi]

Persiankiwi, you must look up Gastroparesis (paralysed stomach). This can accompany S.S. as part of autonomic dysfunction. Early satiety (feeling full after just a couple of mouthfuls) is a hallmark symptom.

Difficulty swallowing may not just be because of dryness it can be because of paralysis of the oesophagus.....again an autonomic problem associated with S.S.

If after your research you think either of these symptoms may be due to Gastroparesis or Oesophageal dysmotility then you need to see a good gastroenterologist who can test specifically for them.

There is medication, along with a liquid or pureed diet which can help.

[Psychodelia]

Hi, that must be pretty damn awful. I don't suffer from problems swallowing food, but my mouth does get very dry. I am able to alleviate that with Biotene mouth spray. Do you have trouble swallowing water? If not, be sure to drink plenty of the stuff as you will dehydrate otherwise. Wishing you all the best, if you do look through previous comments, there's lots of good people on this site with many helpful suggestions. Have you actually been diagnosed with Sjogrens/fibromyalgia? I guess you have, but if not, may I suggest that will be a good place to start.

[Sadiemay in reply to Psychodelia]

I can usually swallow water. I drink alot of water I also drink raspberry tea! Lots. Occasionally when I try to swallow, just spit my muscles will not cooperate. I have gitten real panicked with that, feels like I'm choking, it's weird. My mouth is also very dry, always have sores in my mouth and cracks on the crease of my lips. This disease just keeps on giving.

[Psychodelia in reply to Sadiemay]

Sadiemay Glad you have no problems at least drinking water and tea. It must be terrible to feel you are choking. Maybe you should check out a site on panic attacks - they have very good advice on coping with these type of problems and all sorts of breathing techniques to help calm you down. Best of luck!

[Debbweb01]

Yes it does! I have cracks and now I drool! Does anyone drool? It seems my saliva has rerouted itself! GODSPEED