Difficulty swallowing food and liquids: Hi all... - LUPUS UK

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Difficulty swallowing food and liquids

Queencara78 profile image
14 Replies

Hi all, just wondered if anyone else has experienced difficulties with swallowing food or drinks? it doesn't seem to happen very often but when it does it really is quite frightening.

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Queencara78 profile image
Queencara78
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14 Replies
Cvansidener profile image
Cvansidener

Aloha,

I have lupus and vasculitis and yes I have a hard time swallowing at times. Not sure why but my feeling is like it's an internal flare, It usually goes away in a couple days. I asked my rheumy about but he's not the most forthcoming but wanted you to know your not alone! Best of luck.

EOLHPC profile image
EOLHPC

I'm like cvansidener...am 62, have infant onset lupus of the vascular type and early onset sjogrens + vascular ehlers danlos hypermobility so have been managing immune dysfunction + connective tissue disorder related swallowing probs + gastro probs generally all my life. It can be frightening, for sure

Hope you're checking in with your GP & lupus clinic about this...best to keep them up to date on all your multisystem symptoms

There are lots of lifestyle management techniques that help me a lot to minimise my swallowing-motility probs, eg: Drink plenty of water...I keep a glass full for sipping on the go, and take a small bottle along when I go out. Eat small bits & chew well. Eat little & often: graze rather than stuff. Sit up straight when swallowing. Avoid tight clothing....etc etc

Ginger tea is a great soother for the whole digestive track,.,remember your GI track starts at your lips & ends only when stuff exits down below...it's one system, and probs at the beginning usually relate to probs along the rest of the GI. Swallowing-motility & other GI probs can be labelled "functional", but this label DOES NOT mean these probs are insignificant ! Any chronic GI prob greatly affects quality of life...it's important the underlying cause is understood . In my experience, when medics use the term "functional" it's similar to referring to lupus as "mild": they aren't underplaying the significance of your symptoms, they're just logging the severity on a professional scale. Any really serious, informed, good medic will acknowledge there is nothing to scoff at in functional chronic health probs or in mild lupus

And there are prescrition meds that can help manage swallowing probs eg artificial saliva sprays...and if your motility involves stomach/GI motility probs generally there are other meds that can be prescribed eg PPIs & domperidone (moves food on from your stomach faster) etc

This website has helped me lots to understand my chronic swallowing-motility probs, to manage them & to feel more confident about talking to my medics about them:

The IFFDG website: it is FULL of good solid up to date health services info on GI & motility issues, their treatment with pharmaeuticals + their lifestyle management ...the IFFGD is organised by top health system GI experts from around the world. this website acknowledges the special GI problems experienced by immune dysfunction & connective tissue disorder patients:

The International Foundation for Functional Gastrointestinal Disorders .(IFFGD) is your resource for reliable digestive health knowledge, support, and assistance about functional gastrointestinal (GI) and motility disorders (FGIMDs). We are a nonprofit that started in 1991. Discover information you need on digestive disorders in adults and children.

iffgd.org

Apologies for such a long reply...but it's only recently I've discovered this site..I've suffered greatly all my life with so-called functional GI probs...and only now do I feel I understand why...finding this website has been a big ongoing 💡💡💡💡💡experience for me...it's helping me hugely, and I hope it might help others too

Am glad you posted. Wishing you all the very best

🍀🍀🍀🍀 coco

Penelope-Mary profile image
Penelope-Mary in reply toEOLHPC

Seriously coco 😘😘😘😘😘😘😘😘

When is your book coming out....?!

You are AMAZYING 🌟🌟🌟🌟🌟🌟

Bless you

PM

🐚

chrisj profile image
chrisj

Diagnosed with Sjogrens/dry mouth which means I dont make enough saliva. I have a little difficulty chewing and swallowing so make sure I have drinks with my food, especially if its dry food. I sip fluids as I eat. Have noticed the upper part of my mouth at the back near my throat struggles a bit to get the food down and its a bit scary...Sjogrens is to blame for the problems I have

Penelope-Mary profile image
Penelope-Mary in reply tochrisj

Swallowing 💊💊 a challenge isn't it? 😒

PM

🐚

chrisj profile image
chrisj in reply toPenelope-Mary

It sure is...I was having mild panic attacks, fear of choking....its a case of taking the bull by the horns and getting them down..not something I look forward to every day

Penelope-Mary profile image
Penelope-Mary in reply tochrisj

We need a rhythm 🎷 pill in...water sip... head back...swallow....and repeat...repeat...repeat

Miss a beat and 😦

chrisj profile image
chrisj in reply toPenelope-Mary

you play trumpet and I'll do the drums PM ;)

littleeffie profile image
littleeffie in reply tochrisj

Erm I might manage the triangle but will have blonde moments but love to join in😆

Penelope-Mary profile image
Penelope-Mary in reply tochrisj

👍🏼😂😂 love it! 🎼🎼🎼🎼

Mimi1950 profile image
Mimi1950

I have had the same experience and it is very scary. My doctor says it is normal for because of dryness in the mouth. Drink lots of water between bites.

lfu2 profile image
lfu2

Hi Queencara78, Do you mean that it is difficult for you to swallow, or that food and drink 'go down the wrong way'... if it is the latter, then try lowering your chin to your chest as you swallow... this will mechanically close the vocal cords and make it nigh impossible for food or drink to go down there. Good luck.

shareasmile profile image
shareasmile

I have had difficulty swallowing for a year or more. I feel so close to choking every time I eat or drink and sometimes I do--especially fruit and veggies or chunky soup.....Pills get stuck. Corn gets stuck. I explained this to my GP who then referred me to gastroenterology. I said I wanted to wait, but she said if I was her sister she would make me go. So I gave in. My appointment is tomorrow, so I'll be anxious to see what happens. You should say something to your GP. Better to stay ahead of disaster!

LuckyJC profile image
LuckyJC

Have you heard of Eosinophilic Oesophagitis? It's a rare allergic disorder that causes a range of problems, one of which is problems with swallowing and choking on food. I was diagnosed with it last year, plus hypothyroidism. Now I have symptoms suggestive of 'a connective tissue disease', hence on a lupus forum! EoE is rare and most doctors in the UK have never heard of it, but might be worth investigating

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