Scleroderma & Raynaud's UK (SRUK)
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Worried

Hi I have had limited systemic sclerosis and so overlaps for a few years. I’m under a local rheumatologist and the royal free. I’ve never had any difficulty with Gi issues and had an all clear barium swallow. About 3 days ago I started to get a pain between my shoulder blades It’s like I need to burp but it doesn’t help if I do. I’m getting a lot of reflux which is also new. It feels like I’ve been punched in the back. It is worse on eating. Does this sound like the scleroderma?

Thanks

Sam x

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Hi there, I would just make an appointment with your GP or speak to your Rheumatology team, either locally or at the Royal Free. It could be something and nothing and it could be a change in your scleroderma symptoms. Without checking it out it is impossible to know. Anyone can get issues with reflux now and then. Please don't worry until you know for definite what is going on.

Lucy xxx

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Hi Sami.

I also have limited systemic sclerosis and am fairly new to it and am still discovering various symptoms. It's a bit like putting a jigsaw puzzle together, as various small things that appeared over time but were fairly harmless and had not been followed up at a GP now finally all make sense. And more puzzle pieces are to come...

I didn't experience the pain between the shoulder blades, but the burp feeling - as if some food got stuck in the espharagus on the way down.

Apparently that is a common thing and I was put on Omeprazole 20mg which did help. I stopped taking it now, but still have it and can take it adhoc if and when required.

I believe we are in good hands at the Royal Free as they seem very specialized. Talk to your Rheumatologist or give them a call. Not sure about the pain between the shoulders, but I'm sure they can tell you more.

Good luck!

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I find the swallowing difficulties hard...even water can feel stuck there.

Do people find lanzoprazole etc help? Interesting you are taking it ad hoc hunkydory.

I don't seem to be digesting things properly so it is getting complicated to get a wide range of foods.

Do you have a dry mouth,as this adds to the complication

I'm on an elimination diet with no grains dairy potatoes and this is supposed to help reduce inflammation. Here hoping!

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Hi LilaJoe.

I took Omeprazole for a little while, but asked if I could stop it as I felt it had helped and I wasn't experiencing the "stuck" feeling anymore. My rheumatologist agreed and suggested I could stop it and only take it if and when I have any issues. I haven't really had any issues since, so therefore haven't tried the adhoc method yet tbh. But yes... apparently it's okay to take it as and when needed. Sounds like you have some more issues with that though. Good luck - I hope you'll find something that helps. Sounds pretty annoying! :(

PS: Yes, got the dry mouth too.

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Thanks Sami.

l had a barium swallow showing there is acid reflux,tho l'd never had any heartburn. It's a bit of a juggle l think as the PPI s like omeprazole reduce stomach acid so reduce digestion, which can be already compromised by SS.

Oh for the simple life!!

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