Throat issues: Hi all, I have Raynauld... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Throat issues

newton profile image
9 Replies

Hi all, I have Raynauld's and scleroderma having all the symptoms of CREST with muscle involvement of the oesophagus. I have had manometry tests which show the muscles of the oesophagus are affected Recently I have been experiencing a feeling of having lump in my throat around the Adams apple area making swallowing uncomfortable, has anyone else experienced this? I also suffer from a very dry mouth & eyes & that may be Sjogrens I would be grateful for some tips. Many thanks. Newton.

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newton
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9 Replies
honeybug profile image
honeybug

Hi Newton

I’m sorry you are suffering.

I have Raynauds Phenomenon it started age 12 which makes 55 years now. I suspect I have Lupus as it runs strong in my Dad’s family. I also have Sjögrens Sicca. Like you I have extremely dry mucosal membranes. I was diagnosed by my ENT. He prescribed Rx Evoxac (e voe zack) capsules twice daily to produce moisture...works great. I use Refresh Eye Lubricant in the individual ampules. No preservatives once opened it will last three days. For my mouth I use Biotene oral gel at bedtime as well as oral spray to swallow and aid my throat.

Like you I have swallowing problems I frequently get a lump in my throat just as I’m swallowing my food It goes down so slowly and is agonizing right down to my stomach This is followed by pressure from my stomach on my whole esophagus that stops at pit between my collar bones at the base of my neck Lately that seems constant I haven’t any clue how to treat this as I haven’t seen my ENT for a while due to spine issues If you have GERD it is best to sleep on your left side I have this too

I hope you find relief soon Take care and best wishes

😊🌸 🤗💕😘

linda-l profile image
linda-l

It sounds to me like you have very active Sjogren's Syndrome.

I have Primary Sjogren's, scleroderma overlap and very severe Raynaud's (all year round) and also sometimes feel I'm going to choke when I eat and, like you, pain on swallowing.

Horrible conditions, but autoimmune diseases are pretty miserable, sad to say.

I have several other autoimmune conditions, but won't worry you by listing them here.

Biotene gel at night does help me, but I find the mouth sprays ineffective so chew sugar-free gum which stimulates what's left of my salivary glands.

I really hope you get help.

Linda

winifred profile image
winifred

I have CREST and the same symptoms as you with regards to swallowing. I would recommend eating small portions more often: chew your food well; drink a lot of liquid with it. Hope this helps.

Ncoff profile image
Ncoff

I felt like there was something stuck at the back of my throat before and constantly have a sore throat and sore to swallow

zenabb profile image
zenabb

Always remember that symptoms come and go. In the last few months I had terrible pain in my right knee. I saw doctors etc and one day the pain disappeared. just like that. But for your dry eyes you need to see an ophthalmologist and probably be given moisturising eye drops.

newton profile image
newton in reply to zenabb

Thank you for your reply, I think your right with the symptoms coming and going, I tend to call it flare ups and would really like to understand what is going on. I have drops for my eyes which help and for my dry mouth I find water the best.

LilaJoe profile image
LilaJoe

I've started ikervis( cyclosporine eye drops), supposed to reduce inflammation,

I also struggle with very dry throat, affecting my voice now

I've just started LDN, not sure what effect it's having but it has some good reviews.

I have salsgen too.

MoominMomma profile image
MoominMomma

I have Lupus and scleroderma which has caused problems with my oesophagus. I’ve had manometery tests, barium swallow and gastrocopies. They thought it was achalasia but now think that my oesopgagus just doesn’t contract properly causing just gravity to allow food to digest. This causes me to be sick & constantly feel be in pain. I get dry eyes through the lupus too and have used eye drops for relief.

I hope you get some answers & relief from some medication soon.

lonelyone profile image
lonelyone in reply to MoominMomma

Wow. Been interesting on here today. And sad.

I've been dealing w this.. Been getting worse lately. Its scaring me because I live alone and am very alone.

I haven't really brought this up as much mainly the servere acid 24/7?

And trying to explain it like its this unbelievable excruciating contraction that I can feel start like in my tonsils then works it way down to my center chest.

Last night it lasted for hours I couldn't sleep, it usually is like 3min? 3 excruciating minutes...

I don't understand what's happening to me?

And right now I don't even have a Rhuemy...

I can't take much more.

So this does happen with scleraderma??

I've been focusing so much on the lupus and Vasculitis, the scleraderma DX kinda took a back seat but my symptoms are out of control..

Any advise or your experiences would be appreciated.

Ali

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