Swollen eyelids/Scleroderma - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

10,797 members5,387 posts

Swollen eyelids/Scleroderma

Fuchia profile image
10 Replies

Hi Fuchie here.

I would like ask does anyone else get puffy/ swollen eyelids? I have noticed the past few weeks I have this new addition. Particularly in the mornings (or is it getting older!!!) I was only diagnosed before Christmas and still adjusting to all the symptoms.

Thanks everyone

Written by
Fuchia profile image
Fuchia
To view profiles and participate in discussions please or .
10 Replies
funnyfanny profile image
funnyfanny

Hi Fuchie, yes I suffer with puffy/swollen eyelids. Ive been having this for approx 3 yrs now. I do find that when I'm not feeling so well they do look worse. Im only 42 so I don't think its age related more symptom related.

Fuchia profile image
Fuchia in reply to funnyfanny

Thanks Funny fanny, I too think it is symptom related as it first started over night and didn't develop slowly. Mine are also worse when I am going through a bad spell.

LucyJean profile image
LucyJean

Hello there, just joining the role call here to say that I get the puffy eyelid thang too. I am 44 so please let us not say it is age related :) When I am run down it is worse, in fact my eyes seem to be more red full stop. Nobody really notices it apart from me I am sure and eye make up sorts it out.

I hope that things settle for you and that you have a good team of medics to get you started on treatment.

All my best

Lucy

Fuchia profile image
Fuchia in reply to LucyJean

Hi Lucy, I camouflage with make up too😉Let's hope it keeps working. I do have a good rheumatologist who has helped me so much after waiting a good few years for a diagnosis. Just good to chat with others in a similar position. Thanks a lot.

Here's to all of us with 'chubby'eyes....

in reply to Fuchia

I used to have this for years in my 30s and 40s - was told I had posterior blepharitis with Rhinitis with eczema on my scalp and everywhere else too. Now I have been diagnosed with primary Sjogrens Syndrome with Raynauds. I'm hypothyroid too and being assessed for Scleroderma.

My eyes are no longer puffy now in my early 50s- but are chronically dry - producing no tears whatsoever. This isn't age related for me - it's Sjogrens - also a common secondary disease to have with Scleroderma.

Heat pads/ wheat bags warmed up slightly with an eye massager using a special opthamology tool really helps posterior blepharitis I'm told. I also have meibomian gland disease which means my eyes don't produce enough oil. You should all get this checked out by a good optician or opthamologist as there are topical treatments that can prevent it from causing damage to your eye surfaces and bring much needed relief too.

Fuchia profile image
Fuchia in reply to

Hi Twitchytoes, thank you for all your help and suggestions. I will look into the recommendations. I too have been told I have Sjogrens, fibromyalgia and osteoarthritis along side the Scleroderma. We'll all get there in the end I am sure. Wishing good future health.

Fuchia

in reply to Fuchia

Thank-you Fuchia. In that case I'd say Sjögren's is very likely to be the culprit. Do you use preservative free eye drops? Unlike Osteoarthritis and Fibro, Sjögren's is an autoimmune disease and needs taking seriously as you can get corneal ulcers and other problems with your vision and teeth and many of the symptoms of Scleroderma are also symptoms of Sjogrens - left untreated they can make each other worse. Regular eye drops and good oral hygiene are both a must! X

Fuchia profile image
Fuchia in reply to

I don't have anything for the eyes at the moment Twitchytoes. Rheumatologist have written to GP to give me something for dry mouth and I have had big dental problems the last 5/6years. Treatments have gone very wrong. Rheumatologist said that was due to Sjogrens. It is just a lot to take in when you are first diagnosed with different autoimmune diseases. I seem to be reading permanently with any free time I have. All your help is much appreciated.

in reply to Fuchia

I really do understand. It's like having a new full time job isn't it?! My Sjogrens is thought to be my primary disease now but I was initially diagnosed and treated for RA. I got completely knowledgeable about RA with secondary Sjogrens thrown in. Now I'm trying to get my head around Sjogrens being my main disease instead and other diseases such as Raynauds and scleroderma crossing over possibly.

I feel back to square one! - especially as my main problems with Sjogrens have been neurological and my dry mouth and eyes are just one of many aspects to my disease.

Still blepharitis should be one thing you can sort out quite easily with some help from your optician. X

zenabb profile image
zenabb

In my experience (I am 87) symptoms come and go in cycles.

You may also like...

Scleroderma

Reaching out to everyone in the UK with scleroderma Hello all I want to get as many people with...

Scleroderma

Raynauds and scleroderma

I have been on sick leave from work for 5 months due to raynauds and scleroderma, I have an...

Scleroderma

Since recently being diagnosed with scleroderma (which type I'm not sure) I feel so down and anxious

Scleroderma Sufferer.

I am 66 years old and have had scleroderma for 2 years but only been diagnosed for 6 months. I live...