Difficulty swallowing

Hi,

Does anyone else struggle with swallowing?? Like u have to really swallow hard to get the food down ur throat?

I have to drink to help get the food down. Esp bread.

I’ve finally visited the gp about it after several months of it happening, I’ve been putting it off as scared of it might be something serious.

He is sending me to ENT specialist to have a look with a camera. I did mention it to my rheum a few months ago as I do have dry eyes and mouth but had negative eye pH test thing but have positive anti ro antibodies. So thought maybe it was a lack of saliva or something??? He just said I don’t know, just drink more with ur food.

Does anyone else get this? Is it a lupus or sjorgens symptom??

I have sle and aps x

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Hi

I've had the same problem for a while now as you say, especially with bread. Did mention it to GP a couple of months ago and she said they would monitor it. To be truthful, I'm so fed up with GP and hospital visits that I haven't mentioned it again to them. Probably stupid of me but I've really had my fill of examinations 😣

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I've had swallowing problems for 7 years. I've had every test, cameras done my throat, even an operation which didn't help. They said the muscles in my oesophgus were very weak and said the only explanation was that it was lupus related. I have recently been told that my breathing problems are also due to weak muscles probably lupus related.

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Yeah, I can relate to that, I've also got problems with my lungs due to lupus. Just feel it's never ending, one problem after another. Was told on Friday that my liver enzymes have now elevated, this could possibly be down to the medication (Azathioprine), will be retested on Wed

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My liver enzymes did that with azathioprine so had to stop it, they came back down then they tried it again but did same thing do had to stop. Am now on mycophenolate which was ok but had to stop it for a wk recently as my immune system dropped too low. Just started back on it so will see what happens!

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I hope it works out for you, nothing is easy with this bloody illness!! No doubt ill find out after Wed what's to happen

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I’m not massively bothered with it, if it’s nothing serious I can live with it, i just want to make sure it’s nothing serious as I am an ex smoker so keep thinking now oh god has that caused something!

So as long as it’s nothing serious I can live with it x

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I have a condition called Eosinophilic Oesophagitis which causes swallowing problems, so you might want to look into that in case it rings any bells? It’s usually caused by a rare type of food allergy but there’s also a crossover with connective tissue diseases. It’s very under-diagnosed in the UK as most doctors have never heard of it, other than specialist gastroenterologists apfed.org/about-ead/egids/eoe/

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Hi LuckyJC

I had a barium meal swallow because of same problems you have described only I was diagnosed with esophageal dismotility (paralysis) but im wondering because when i eat I get bubbles in the back of my throat and do have a few food allergies. I get very compacted even with sloppy wet diet and take omeprazole and gaviscon I can't remember the name of the one I've just been prescribed I'll look.

I'm glad you put this reply on as I'm being checked for Lupus its waiting for that test thats goes with all the others to back positive it's exhausting. Thank you for giving me something to look into.

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I have a condition called Eosinophilic Oesophagitis which causes swallowing problems, so you might want to look into that in case it rings any bells? It’s usually caused by a rare type of food allergy but there’s also a crossover with connective tissue diseases. It’s very under-diagnosed in the UK as most doctors have never heard of it, other than specialist gastroenterologists apfed.org/about-ead/egids/eoe/

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Thanks, will do a bit of research. If it doesn't get any worse then I'll let sleeping dogs lie as they say

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Hi CarolMcI

As I replied to another response I have Esophageal Paralysis (Dismotility) I was given a Barium Meal Swallow that said my esophagus was not contracting properly so my food was staying in my gullet and it was taking about 12hrs to get to my gut causing all sorts of problems. I am now on a dysphagia nutritional eating plan of sloppy wet food and don't eat bread unless toasted. Hopefully this may give you something to look into or ask your doctor (preferably specialist) about. I hope you get your answer soon.

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Thanks very much KyteP for your advise

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I have a condition called Eosinophilic Oesophagitis which causes swallowing problems, so you might want to look into that in case it rings any bells? It’s usually caused by a rare type of food allergy but there’s also a crossover with connective tissue diseases. It’s very under-diagnosed in the UK as most doctors have never heard of it, other than specialist gastroenterologists apfed.org/about-ead/egids/eoe/

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I have swallowing problems and was given a tip by the speech and language therapist. She said mixing textures can actually make it worse e.g. adding fluids to solids. If it’s dryness giving an odd sensation, then it makes sense but if you have muscle abnormalities or a weakness, it could exacerbate the problem. Definitely get yourself assessed. I was given helpful advice from the SALT and a dietitian.

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To be truthful crashdoll, the thought of a scope scares the life out of me hence the reason I don't push for answers

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I think that’s partly why I’ve been putting it off so long but the gp said it’s fine it’s just a tiny wire they use thru ur nose I think as I said ‘oh my god will they sedate me!’ But he said it’s not that bad. But we will see I’ll be the judge of that ha!

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The famous words "this won't hurt"......Yeah right, swap places then ☺

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I wasn’t given a scope, although I’ve had before and it was fine as I was given sedation and don’t recall a thing. I had a videofluroscopy. You’re given things of various textures; water, Custard and something else but I can’t remember. Barium is added to it but I didn’t really taste it. They put you in an X-ray machine and watch you as it goes down. It was a very simple, non invasive test.

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That doesn't sound too bad, pretty bad considering I'm a nurse but the idea of a scope always freaks me

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Ha I am too! I think we know/see too much that’s the problem. We know what to expect!

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I definitely can agree there. Small world 😁

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I do have that problem for many years. I had may throat stretched once. It doesnt last. Taking prilosec really helps me. Doctor tole me, it is part of the sjograns. I have to use eye drops from time to time too. Am always drinking water. Sometimes I would be out and if I did not have anything to drink with food, Could get in a choking situation. Not a good scene. I go everwhere with my water or diet soda. Simply cannot eat a lot of food with drinking liquid.

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Cannot eat anything without drinking something along with it. Dont let it go or you can have worse problems. I ignored it for a long time and now hane barretts in my throat, which is precurser to cancer. I take good care now.Please take care. Many blessings to you.

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I have sjrogrens and is for most part NOW they say is why I have a swallowing problem. The ent did a test down the throat and over and done with quick. Did not hurt. The gastro doc stretched my throat. Did not last. My rheumatologist diagnosed sjograns and ever since I started on prilosec much better (or something like that is fine). It does work. Most sjrogrens people have dry eyes and throat, due to not enough saliva in mouth. You can take sour drops to increase saliva or biotene gum. I due have stomach troubles along with that. Doc told me should always carry nonsugar drink or water, because not having enough saliva can be a nasty cause of cavities. Take care of your teeth. God Bless you. So many complications. .

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Hi Sara, i'm sorry to hear you have problems swallowing. It's quite scary isn't it? I have the same and sometimes can't even swallow my own saliva. You sound very much like sjogrens, which I also have. I have an AS Saliva spray for dry throat and eye drops for dry eyes. My voice has changed and my voice often appears to be drying up also, in that I will just run out of speech if I talk for too long. Sjogrens also does all the usual horribleness that comes with these auto immune diseases; fatigue, muscle/joint pains, fog etc etc.

I definitely think you should ask for a test to exclude/include sjogrens and best of luck honey. You have my true empathy. Peace and pain relief and gentle hug.

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I have this too and as you know my main disease is Sjögren’s. I had a barium swallow last week so will see but, disgusting as it was, I did manage to swallow and could see it all in my tummy which suddenly went from black shape to white! I do also have GERD which is very common with Sjögren’s. The swallowing thing is mysterious to me because my mouth isn’t usually that dry. Recently I’ve had a horrible pain in back of my tongue or throat on one side and wonder if I have Glossopharyngeal neuralgia. I will ask my gastro about this on Thursday as my neurologist is a complete horror person whom I hope never to see again. Glossopharyngeal neuralgia is common with the neurological type of Sjögren’s.

I can manage okay with lots of water but my altered sense of taste and this problem have now given me a phobia about many foods for texture reasons. I think it’s Sjögren’s because if I didn’t drink a lot with food then I literally would choke on it - so not drinking water as I eat isn’t an option for me. It’s a classic symptom really and far from ideal. X

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I have sjogrens too. Do struggle with swallowing & sleeping .I've had the new drug belimumb but stopped as its was making me lose my voice & now completely gone ent had a look & done biopsy came back clear so they think the drug has damaged my throat seeing ent again on Thursday see if anything change down there but I'm still the same so no change in my opinion . X

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My husband is having problems swallowing and a barium meal picked up he has a pharyngeal pouch. It seems like he will need an operation, so is waiting for a referral for that.

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Yes i am the same infact i dont eat bread or currant buns even a soft pizza can be difficult i have sjogrens disease lupus sle and and others too, along with dry mouth and dry eyes i was told the same as usual its just get on with it

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Like I say tho as long as it’s nothing serious then I can live with it, I love bread etc it would be better if I didn’t as I wouldn’t be 2-3 stone overweight!!!

I just drink with my food so it’s not a major issue just want to know there’s nothing else going on and that’s all it is

Looks like it’s definately a big AI issue from all the responses!

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Hi Sara_A,

I am sorry to hear that you are experiencing some difficulties with your symptoms at the moment.

We are not medically trained here therefore we cannot state what the cause of your symptoms may be. However, the symptoms that you have described do resemble those associated with Sjögren’s syndrome.

According to The Lupus Encyclopedia, Sjögren’s syndrome “affects the lacrimal glands, which secretes tears, causing dry eyes, and the salivary glands, which secrete saliva, causing a dry mouth”. The encyclopedia states that one key symptom of dry mouth in Sjögren’s syndrome is ‘difficulty swallowing dry foods without water’.

The NHS Choices’ website provides information on the diagnosis of Sjögren’s syndrome. To find out how you can be tested, click here: nhs.uk/conditions/sjogrens-...

We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which you can read here: lupusuk.org.uk/wp-content/u...

Here is the link to our blog article on 'coping with dry eyes & mouth': lupusuk.org.uk/dry-eyes-and...

For more information you can also visit the BSSA (British Sjögren’s Syndrome Association) website here: bssa.uk.net/

Please keep us updated, wishing you all the best.

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