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Scleroderma & Raynaud's UK (SRUK)
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Anyone else struggling to swallow?

Hi folks, for the past few weeks I have been struggling to swallow my food without help of a liquid drink, weather it be water, milk etc. Went to the doc who has made an urgent referral to have a camera down my throat, which I 'm not looking forward to. When I asked the doc about if the hospital don't find anything, he said well blame the secondary Raynaud's. I have the camera on Monday and rheumatology on Thursday, who'll I'll mention it to, but just wandered if anyone else has suffered with it. Just food landing heaving and feels stuck in throat and can't clear it without liquid with every 1,2 or 3 mouthfuls. Thanks for reading guys.

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As I understand it it's possibly Sjogrens which can go hand in hand with scleroderma. I have exactly the same thing.

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Hi Claire, I only have secondary Raynaud's at the moment. I do think and feel this is mutating and adapting, so when I think I'll live it, it throws something into the mix that makes me think 'what else'.

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I deal with this also mine depends what I eat . Carbs more likely .. and drinking when this happens usually doesn’t help me it is frustrating . But mine comes and goes with the type of food I eat . I hope all goes well with your test !

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Thank you Emfrenette, mines almost everything I eat. Will have to wait I guess and see.

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I get it too, it improved for a time when I first started taking Lanzaprasol but it’s back now with a vengeance. For me drinking doesn’t help so I have to resort to other methods to clear it. I’ve been told I don’t have Sjögrens and it’s part of Sclero. As yet an endoscopy hasn’t been requested. Hope yours goes okay on Monday

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Thank you, I hope it goes well Monday too lol. I don't like hospitals much and this is worrying me a little

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I’m not a fan either lol but if it’s something that will help in the long run, and make our lives more comfortable, then it has to be worth it 🙂

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I had food getting stuck at the top of my stomach, there was a stricture. Three endoscopies stretched it out and I've been fine for a couple of years. I had a large dose of sedative each time, out like a light. Tell them there is no way you can swallow that tube and you will be oblivious yto the whole and get woken up with a nice cup of tea

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Getting tired 'oblivious to the whole thing'. Why can't i edit

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I would love to me knocked out, but never had it before and been knocked etc. When the booking person said they're booking 2 theatre slots, my hands went blue instantly and panic has set in. Never been in theatre before and scared senseless here. Time for me to pull myself together and face up to it I think.

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The hospital would rather not sedate you, i was told around half can manage. For my first one they sprayed a local in my throat and i coughed and choked. The guy said Oh you are going to need a lot of sedative and they did it as a matter of course for the following ones.

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I have this problem too, have to drink lots of water when I eat. Bread is most difficult and I am always especially careful when eating out, don't want a choking fit in public. I have had n endoscopy recently and the tube was MUCH smaller than the previous time, not too difficult to swallow at all. Best of luck on Monday

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Thank you

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Hi. I struggle with certain foods - bread and pastry. A couple of bites in and then I get the most painful loud hiccups. That's with fluid intake too. Any 'dry' meal is now avoided. Fortunately it's not everything I eat so I sympathise

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Refuse to panic about your theatre trip - it will soon be over. Don't let your mind win! Let me know how it goes 💐

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I will Jen, thanks for your support

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I get this horrible symptom too avtargill. Like Emfrenette I find it's more so with carbs. I struggle with crisps and chips and sometimes bread. My instinct is to drink fizzy soda water (plain soda water not sweet flavoured drinks) and it seems to help move things down. I've had the camera thing a couple of times - I was dreading it but it wasn't half as bad as I anticipated. Don't let your imagination run away with you (as I did expecting all sorts of horrors) it all proved to be quite "do-able" . When they asked if wanted to be sedated I said, " yes, as much as you dare give me. " You'll have more peace of mind once they've had a proper look. Hope it all goes well.

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I have problems with cake, any leaves and skins so salad is out.

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Hi, I also have this problem especially with carbs. I feel as if the food is stuck then I get horrendous hiccups. Always have to take fluids

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Hello avtargill , I fully understand what you're going through I'm having the same problem , anything I eat feels like I've swallowed a brick and it's stuck ! I've been diagnosed with dermatomyositis Raynauds and loads of other things, don't panic about endoscopy it's not pleasant but it's quick,I was totally bricking it before but with the bannana spray to numb things they were in and out like the sas ! ,I was more concerned about the massive burp I did after lol ,also if they don't find anything wrong with your stomach like they did me ,they will probably do a barium swallow I'm currently waiting for appointment to experience that one ! Stay positive there are things that can be done to help

Xxx

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Yes I do. It’s the Scleroderma. The esophagus doesn’t always do its job properly! Keep some water handy.

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I only have secondary Raynaud's at the moment. I think it might be mutating into scleroderma

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Hi,

I have Scleroderma and have serious swallowing issues(dysphagia), I was on a soft diet a few years ago for a long time but have progressed onto chicken, cod and eggs, I have to keep drinking and ensure my posture is good so I don’t choke when eating. It takes me ages to eat but I avoid salads, rice, tomatoes and anything that can get stuck in oesophagus. I’ve had all the camera investigations and a video fluoroscopy, I take lanzaprazol as well as other drugs but best to eat little and often and make sure you always have a drink handy and sit upright.

Good luck.

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Thank you for your advice, will try that.

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I also have this, the problem is with carbs particularly bread which causes me a lot of pain in centre of chest then I end up being very sick! Not pleasent at all.

Had endoscopy etc plus a barium meal which showed nothing. I do have secondary raynauds along with SSc but I have had some serious cervical neck surgery and they now think it’s adhesions. I’m not sure but I do avoid bread now and heavy carbs.

Hope you get sorted soon!

Suejen

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It is a good idea to get checked. I get enlarged lymph nodes and sometimes have to chew my vitamins. I take 1/4 of a generic Zyrtec (antihistamine) before I go to sleep if I feel the need. I also use the Arm and Hammer nasal spray to rinse allergens and bacteria out. This helps prevent colds. I had an ultrasound of the lymph nodes in my neck around my throat and they did not advise a biopsy. Taking the antihistamine keeps them from flaring up. I have some food allergies, maybe you do, too. I am allergic to egg whites and wheat gluten. I also take 500 milligrams of Niacin Twin Labs brand twice a day for Raynaud's and it works well. You could also see an allergist if you want to. Please take care of your health.

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Oesophageal dismobility is very common in scleroderma. I hope you are having a motility test and not just an endoscopy as this will not really show them what the rheaumatologist wants to know. I have had endoscopy, barium swallow and finally motility test. In the end it all boils down to advice about chewing foods well, small mouthfuls, no dry foods and always having a drink along with meal. If you have reflux issues you will also be given a protein pump inhibitor like lansoprazole. Good luck with your tests but rest assured you are not alone with this problem.

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I have this problem, and with food refusing to pass from my oesophagus to my stomach, too. It gets stuck there and all I can do is keep sipping until it all (sorry) regurgitates. This can take hours. Fizzy water and otc meds meant to help trapped wind can help.

I've had two endoscopies and a barium swallow. Definite dysmotility. I have Seconday Raynauds and Systemic Sclerosis. Unfortunately when the " stuck" problem started I put it down to stress and didn't see a GP for months thinking it was reflux. At the first endoscopy they took biopsies. For me, that was not fun because they had to try so many times to get hold of the ulcerated parts they wanted to pinch out. I dreaded the second, but it was a breeze.

I do hope you can get help. I now take four omeprazole a day to prevent the reflux but I was very stupid not to see a GP sooner.

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Are you ok - did it go ok? Jen

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Hi Jen, my throat is very very sore, the back bit is painful and just taken some ibuprofen. They found some red bits (which looked like a tiny cut) and said it was sore and that what is probably causing my problems with swallowing. I got a report (the same goes to the GP) and it reads that I need to lose weight and change my life style, but the guy didn't ask anything at all, no Raynaud's questions or lifestyle questions, so struggling to understand how he has come to that conclusion. I know I'm fat and life style isn't great but to not even say but put it straight into report instead I thought was naughty. It's been a heck of a day so off to bed as this throat seems to be getting worse :-(. Thanks for thinking of us, means a lot. My partner was there and held my hand, I ' know I'm a big baby lol. Thanks again for thinking of us. Night for now. Avtar

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I have a constant sore throat which makes it hard to swallow

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Never eat without liquids. That’s just something I’ve learned.

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I'm understanding that now, the hard painful way lol

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I have been on the *chocking diet* my entire life ..... Always need to have a (I gotta have swaller of some kind with every freaking bite of food) drink of water with a bite........ Every time I *chock ..., That is it ! *Stick a fork in me* because I'm done .......

Bless the one that made the nutritional drink ..., Or I would NOT be here ...,

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