Sjogren's Syndrome

[Sarahbv]

I have had Raynaud's since I was 14 (now 55). At 21 I was diagnosed with CREST Syndrome (Limited Cutaneous Systemic Sclerosis) but now I'm wondering whether I have mild Sjogren's Syndrome. But the symptoms are contradictory. My eyes get quite sore and react badly to sunlight or even just light so I always have sunglasses on when others wouldn't dream of it. That's been going on for some years. I have an overproduction of saliva when I talk but when I wake up in the morning my gums and teeth are glued to the inside of my mouth and it's all so dry that it's like waking up from an anaesthetic after an operation. In the New Year that happened for real as I fell and broke my femur! Also, I've now had a cataract diagnosed in my left eye. Does anyone know if the cataract could have been brought on by CREST? Does anyone else have the dichotomy of over-productive saliva glands allied to an extremely dry mouth in the mornings? Could I actually have Sjogren's Syndrome? I know, I know, go and see your doctor, Sarah! But if anyone has any answers or suggestions, I'd appreciate it. I use Allergan eye drops. Thank you in advance.

[Hidden]

Sounds like it! I have it, my eyes are terrible and i use carbomer for these. My mouth is dry in the morning, and i have fissures on my tongue. A recent ultrasound shows patchy salivary glands. I think in response to something the body often goes into overload to compensate, but that makes me wonder if it will get worse as my saliva glands are getting destroyed so it will get to the stage when i,ll have a mouth like Gandi's flip flop! I feel very dehydrated a lot of the time too. Dont know about the cataract i think they're quite common as you get older?

[wartsandall in reply to Hidden]

I have also been diagnosed with Sjogrens Syndrome and suffer with the same dry sticky mouth during the night and first thing in the morning. My lips are often stuck to my teeth, and my gums are reseeding. I also develop a very dry mouth when I'm anxious or speaking for long periods, this can become very embarrassing when in an interview situation or when I am public speaking. I take frequent sips of water and chew gum to stimulate saliva production, this helps however, the nature of my work can't allow my jaw to be continuously chewing. In addition to this I can't tolerate salt and and spicy foods, I often miss out on tasty meals because my mouth is sore. I usually eat cool natural yoghurt to make my meal more palatable. During the night I try not to drink too much because if I do, I end up with severe reflux and vomit. I have tried saliva stimulating pastilles and artificial saliva's, but non of these products really help. My eyes feel gritty and sore, I use the prescribed lubricants , but I must admit I am guilty of often going to sleep without applying the lotions. Does anyone who suffers the same have any suggestions or tips that may make life with Sjogrens easier.

[MikefromsouthNZ]

Hi, yes I also have Sjogren's symptoms. I have very dry eyes and nostrils, plus my mouth gets very dry and sometimes I wake up with a "sticky," mouth and tongue.. I've had blood tests for Sjogren's but they came back as negative but my ANA was a little high.. I will get another Sjogren's blood test annually as blood tests aren't that reliable.. The only proper test for Sjogren's is a lip biopsy..

At present I'm having treatment for my dry eyes as my optician believes I have Dry Eye Syndrome ( DES ).. My eyes feel like they have bad sunburn with a sandy grit, and sometimes I get grey sticky discharge over night.. My tear test, or wet eye test was extremely low, so I now have four punctal plugs inserted in my tear drains, just under my eyelids. I need to use artificial tears during the day plus I use Lacri-Lub eye ointment at night I'm also light sensitive, as you also described, so now need to wear specialist sunglasses with eye-seals.. They call them Moisture Chamber or Climate Controlled darkened sunglasses... With light sensitive eyes and a need to wear sunglasses everyday, you may have Enlarged Pupils.. It's called Mydriasis, as I have this eye problem as well.. It's when the pupils are larger (like at night) but they don't shrink or get smaller when bright light is shone into the eye..

I'm not sure is this is helpful, but I had a sudden loss of hearing in both my ears and now rely on hearing aids to hear properly.. My audiologest says I have a moderate hearing loss, so not like old age hearing loss.. Without my aids in, sound is similar to hearing under water, so very difficult to understand people talking to me..

I hope this has helped and you probably need to see an Optician about your dry eyes.. Take care ~ Mike

[MikefromsouthNZ]

Hi, yes I also have Sjogren's symptoms. I have very dry eyes and nostrils, plus my mouth gets very dry and sometimes I wake up with a "sticky," mouth and tongue.. I've had blood tests for Sjogren's but they came back as negative but my ANA was a little high.. I will get another Sjogren's blood test annually as blood tests aren't that reliable.. The only proper test for Sjogren's is a lip biopsy..

At present I'm having treatment for my dry eyes as my optician believes I have Dry Eye Syndrome ( DES ).. My eyes feel like they have bad sunburn with a sandy grit, and sometimes I get grey sticky discharge over night.. My tear test, or wet eye test was extremely low, so I now have four punctal plugs inserted in my tear drains, just under my eyelids. I need to use artificial tears during the day plus I use Lacri-Lub eye ointment at night I'm also light sensitive, as you also described, so now need to wear specialist sunglasses with eye-seals.. They call them Moisture Chamber or Climate Controlled darkened sunglasses... With light sensitive eyes and a need to wear sunglasses everyday, you may have Enlarged Pupils.. It's called Mydriasis, as I have this eye problem as well.. It's when the pupils are larger (like at night) but they don't shrink or get smaller when bright light is shone into the eye..

I'm not sure is this is helpful, but I had a sudden loss of hearing in both my ears and now rely on hearing aids to hear properly.. My audiologest says I have a moderate hearing loss, so not like old age hearing loss.. Without my aids in, sound is similar to hearing under water, so very difficult to understand people talking to me..

I hope this has helped and you probably need to see an Optician about your dry eyes.. Take care ~ Mike

[zenabb]

Dear Sarah,

You seem to have dry and wet, poor thing. It's the first I have heard of it. I have had CREST for many years and one thing I have learnt is that I have symptoms appear for a few years and then disappear perhaps to come back again in an other form later. Funny (but not Ha ha) CREST. I find I cannot have spices though I like them and when I indulge with mild ones I make up with cold yoghurt. Or even ice cream after which I have to have a hot drink and warm myself. This year I am often dry and carry a bottle of water with me.

Good luck.

[Butterfly54]

I have sjorgrens syndrome,and have very dry eyes dry mouth all day and night.dry skin,itchy ears to name but a few.

Just waiting now to see if I have Primary(on it`s own)or secondary and seeing as I have chronic osteo arthritis and not rheumatoid,I`m living in dread of there being lupus present,as with secondary these two go hand in glove.

Hugs Butterfly54xx

[Sarahbv]

Bless you all for your responses which give me a lot of food for thought. I am struck, as ever, by the various and varying symptoms we endure as well as the support, warmth and good humour we continue to exude. Wishing you all strength and hugs to keep going in the face of adversity. xx

[Barnclown]

Hello sarahbv

Yes: your last comments seem so true to me. Having read all the posts on your ?, I'm wondering if your consultant continues to uphold your CREST diagnosis? And whether you're planning to ask your consultant whether you have sjorgens. I'm partly interested cause I'm sorta in similar predicament to you (I suspect my version of sjogrens is mild - has been gradually getting worse since the early '90s and is described now by my rheumy as sicca symptoms, plus I'm already diagnosed & treated for other conditions -systemic lupus & mixed connective tissue disorder. I also appear to have simultaneous raynauds & erythromelalgia, and lichen sclerosus. My understanding is that if a person has one automimmune condition, it's possible others will show up as the years pass

Like you're saying, symptoms can be varying & various. Plaquenil has helped me take the edge off many of my lupus & secondary conditions issues, but not the sicca/sjogrens-like symptoms. For them I do the sort of things others have mentioned on here already eg for my eyes. But also my rheumy urged me to "take extra good care of my mouth" so I did a bit of online research especially on sjogrens and my (private) dental hygenist has been very helpful with this eg avoid artificial sweeteners other than xylitol and use biotene products (amazon does a good range - the mouth wash has been an alternative to chewing gum: use it several times a day etc)

I have to be extra vigilant re my eyes anyway due to taking plaquenil, and at my last eye check with the optician, I asked about cataracts, partly cause my 69 yr old brother just had his sorted. I am 58. The optician said I'm fine for now. But I plan to check on this every year. I hope you'll keep In touch, let us know how you get on with the cataract...are you in the uk having NHS treatment for this? Most of my treatment is NHS (I go to something like 7 clinics for stuff...) and, having been on the R&S forum & the Lupus forum for a year now, I feel as if I have myself in perspective, and think of my profile as mild but siginifcantly debilitated

Wishing you all the best with everything: if you feel up for private messaging, you're v welcome to get in touch with me that way

XO

[Sarahbv in reply to Barnclown]

Mild is as mild does! It's all relative, of course. It sounds to me as if you have a lot to deal with and are surviving well. Yes, I get treatment on the NHS with a lovely rheumatologist and will be asking him about Sjorgen's at the next appointment.

I'm finding it stressful having asked my question and now coping with the replies so this may be my last contribution on this page!

Take care.