definitely not! : I seem to have lost... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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definitely not!


I seem to have lost the ability to drink from a cup,glass or bottle without it pouring down my chin. Anyone else have this problem?

22 Replies

Yes I'm the same, just can't form the right shape with my mouth.. usually have a wet chin!! Water bottles and cups of tea are the worse, the drink just runs down the side, there's more on the cup than in my mouth. I finder a really thin cup (like china) with a tulip shape lip helps direct the liquid to the right destination. With a water bottle I tried tipping my head back and squeezing the fluid in but nearly choked myself so that stopped! I was diagnosed with systemic scl last April. Not got any other suggestions, sorry... hope that helps

Thought it was just me! So, must be the dreaded Scleroderma to blame! Just have to keep a lot of paper hankies in my pocket when in cafe or restaurant...same in the house! It is just like we have forgotten how to shape our mouths to fit the edge of the cup/bottle. So weird!

Ricexxjm in reply to marilynmcl

Do you think it is the esophagus?

marilynmcl in reply to Ricexxjm

Not thought of that Ricexxjm...but would think it is something to do with my lips changing shape or how it changes shape to fit the drinking vessel? What used to be done without thinking when younger now seems to be more difficult. Very strange...but only since being ill with scleroderma.

No, it’s not just you. I have the same problem. My dentist has noticed that my mouth doesn’t open as wide now - it is great being told that I don’t have a big mouth!!! I was offered an injection to fill out my lips due to the small mouth syndrome (can’t remember the real name) but they only last 3-6 months.

Keep carrying the tissues with you. 😊 x

I do sometimes but I thought it was from the fact I had a big cup. But come to think of it I always have to wipe after I drink.

I have it too. I think it's a poor lip seal around the rim of the cup or bottle due to the muscles in the lips thinning and getting weaker. I get food residue on the corner of my mouth too. It's just another thing to plan for when going out!

marilynmcl in reply to KatieAnna

Agree! Definitely think this is the case! Thanks KatieAnna!

I am the same, I started off with adult feeding cups it's perspex with a lid with a spout one lid for thin liquid and another for soup etc.

My mouth changed shape so not using it just now.

And so I bought a babies plastic pelican bib to catch everything, it doesn't go right around my neck but it's good because it is not far away from my chin and so can wear without being too noticable and it just rolls up to carry.

Hope you find a solution it's trial and error. Take care

Oh dear Chriswell...sippy cups for grown ups with drippy chins! What are we like? This illness is just a humungus pain in the nether regions for sure! I usually just keep loads of paper hankies in my bag,pockets,upmysleeve too in case we eat out anywhere...but thanks for the tip on the cups and bib idea...very useful!

I have a similar problem with eating, everything seems to settle round my mouth and I have to keep wiping it.

I thought it was just me! My cup or glass always has my coffee or tea dribbling down the side. When I try to take a sip, the liquid seems to seep out of the sides of my mouth. My husband jokes that I am a slob - always dripping liquids and dropping food on my chest!

Hi, not a slob! tell him that it is part and parcel of this illness...we need to either get a big bib or use lots of stain remover on our clothes! I use a tee towel when I eat my dinner...or it does tend to end up down me! Lots of love and empathy Dargomon! xxxx

Yes my lips don’t seal properly around cups anymore, always dribbling ☹️

horrible, isn't it Midgebite? but, at least you are not alone! Dribblers of the world unite! xxxx

Get yourself a trendy reusable travel cup and water bottle with a straw - that’s what I have, as do all my colleagues- theirs is due to our “non spill cups only on desks” policy, mine is necessity! I do however have to get them to fill mine because I can’t get the lid off🤪

marilynmcl in reply to DT1234

Thanks DT...sounds like a good idea on the straws and travel cup! Will be shopping tomorrow!

DT1234 in reply to marilynmcl

Took me a while and several attempts to find a cup that I liked - I had a really good Starbucks one that broke - I dropped it once too often🤦‍♀️I now have a contico one and a cheapo Tesco water bottle. If you drink both coffee and tea you will need a separate cup for each otherwise it will never taste right! TK Maxx usually have a good selection. Personally, I don’t like the “ mouth feel” of the silicone lids but that is a very individual thing, I do find the ceramic ones too heavy and smooth for my hands and I couldn’t manage the one my husband bought for me where you had to push And hold a button to drink from it

Hi. I am still going through the diagnostic process but I was wondering if the symptoms you are describing included or started with randomly biting your bottom lip when eating. I started doing this about a year ago and it happens every couple of weeks. Hadn't really made the link (If there is one) until I read your post. Thanks in advance. C7

marilynmcl in reply to Cactus7

Hi ...not had that symptom Cactus7...but when am in bed in the morning before I get up am biting the side of my lips as if anxious but stop when realise I am doing it.

Cactus7 in reply to marilynmcl

Ok! Maybe it's just me then. It's really difficult not to keep thinking everything that happens with your body is now 'a symptom'. Thanks for your reply. C7

marilynmcl in reply to Cactus7

Maybe it is to do with your illness Cactus-everybody is different on this! If things are behaving strangely with your body then it is only natural to think 'oh oh!' Been there believe me. But, you just have to learn to either ignore the unusual or write it down and ask on here then you can see who else is experiencing these symptoms and compare notes. I do this, and worry is alleviated when I find I am not alone. You take care and try not to worry too much on wishes to you pet.

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