Funko 42: Hi I'm new, I was diagnosed... - Lung Conditions C...

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Funko 42

Funko42 profile image
12 Replies

Hi I'm new, I was diagnosed with Sjogens syndrome a while ago ,I don't know anyone who has it and I'm quit confused ,I also Pulmonery Fibroses of th lungs.  I am 74 years young.thank you.

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Funko42 profile image
Funko42
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12 Replies
Aurorastar_ profile image
Aurorastar_

Welcome :) I'm new here also, support has already been great. You'll learn a lot. 

Good luck, and God Bless.

Katinka46 profile image
Katinka46

Welcome to this forum.  It is extremely supportive and helpful.  I have heard of Sjogens syndrome, (but wouldn't know where to start to pronounce it).  Is it a fibrotic disease like PF? I too have  a fibrotic disease, Obliterative Bronchiolitis.  So I do sympathise.  They are nasty.  And there seems little in the way of treatment or medication. I should be interested in knowing what drugs — if any — you are on.

All the best.  I am just off to look Sjogens.

K xx

Funko42 profile image
Funko42 in reply to Katinka46

Its pronounced Shogrns, it's a autoamune disease attacks the body and all secrections leaves body dry , dry eyes and mouth, I am going to see a rheumatologist then they will see what Medes , I go on .?thank you for your concern xx v

barbs47 profile image
barbs47

Hi I understand that this condition means you probably suffer with a dry mouth etc. If this is the case I also gave this problem. I tried all sorts of things from my doctor but have found what helps me best is Xylimelts made by Oracoat. I searched on the Internet and a company called Mouthulcer sells them at a reasonable price. If I can help you further let me know. x

Funko42 profile image
Funko42 in reply to barbs47

Thank you, v

Funko42 profile image
Funko42 in reply to barbs47

Thank you Barbs47 I'll be in touch.x

Funko42 profile image
Funko42 in reply to barbs47

My mouth and eyes are dry also,it has attacted my lungs so I get it very hard to breathe and talk.im only been diegnosed now I have it along ,you see they put all symptoms to do with my heart, mussels of my heart not working properly. I hope I didn't depress you lol.i didn't mean to Barbs47 x

barbs47 profile image
barbs47 in reply to Funko42

No don't worry it's good to talk. I don't suffer with dry eyes just my mouth but that is miserable enough so it must be horrible to have other problems with dryness. Let me know how you get on with the xylimelts I don't think I could manage without them. Take care x

Matrix profile image
Matrix

I have it and it's miserable , along with everything else. I have mouth pastels spray eye drops and eye cream . It's pronounced surgeon As in  doctor . My dentist spotted it , some days I can barely speak my mouth is so dry xx

Funko42 profile image
Funko42 in reply to Matrix

So sorry to hear that Matrix it's a nusence, yes I know what your going through .x

Matrix profile image
Matrix in reply to Funko42

It is a real pain and  it can really damage your teeth and my tongue is very sore .. Still it's a lovely day outside and I'm going to enjoy it . Hope your ok and having a good day x

Nottobad profile image
Nottobad

Hi Funko42 This is what it is nhs.uk/Conditions/Sjogrens-... I have 2 auto immune disorders. And I am using Viscotears Eye gel because I have dry a eyes. I also have dry mouth and dry down below. So I could end up with sjogrens. I am being monitored by my rheumy consultant.

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