sjogrens syndrome

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sjogrens syndrome

Postby missusc » Sat Jun 26, 2010 9:21 pm

hi

have been to my dentist recently and she wants me to check with my gp if i have sjorgens syndrome which is dry eyes and dry mouth and is a autoimmune disease. i have bad tooth decay, dry nose, which bleeds, re-occuring sinus probs, dry eyes itching and feels like grit in eyes, alot of the symptons mimic fibro. has anyone had a diagnosis as such for sjogrens (show-grins). have had fm for 2yrs and wonder if anyone has secondary sjogrens with fm, which i think i have as these latest probs have creeped up slowly the last six months and now affecting me as much as fm symptons, who says fm is not progressive arghh! :banghead:

missusc (mrs c)
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Re: sjogrens syndrome

Postby denys » Sat Jun 26, 2010 9:55 pm

Hi Mrs C

I have a terrible dry mouth but its caused through my meds, my teeth have to be checked regularly but that it due to my diabetes and my dry, itchy, gritty eyes has just been looked at by the optician who says that the ducts which produce the oily substance which coats the eye when you blink is supposed to be nice and clear but mine is like toothpaste :yikes: :yikes: and so I have to use a heated bag twice a day and then massage my eyes to try to clear it :yikes: hope yours is sorted soon every day more and more problems who'd have FM :crazy: :hugs: :hugs:
Denys

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Re: sjogrens syndrome

Postby budda » Sat Jun 26, 2010 10:01 pm

Hi missusc, sorry i myself have never heared of sjogrens, but i do have very bad sinus problems, and also suffer from itchy eyes, someone on the forum might have heard about this, hope you feel better soon. :hugs:
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Re: sjogrens syndrome

Postby missusc » Sun Jun 27, 2010 9:01 pm

thanks denys and budda

i did find someone on the forum wayback, who had fm and sjogrens, i guess it means more blood tests, just to eliminate possibilities, you think i'd be use to it by now :roll:
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Re: sjogrens syndrome

Postby LinzWorld » Mon Jun 28, 2010 9:43 am

SS is auto-immune, so it's a bit different to Fibro. Your GP should refer you to a rheumy to get checked out - they should also check that you're not showing signs of Lupus at the same time, as it often happens that auto-immune conditions go together.

Some info here: http://www.medicinenet.com/sjogrens_syn ... rticle.htm
I run FibroAction, a small national charity raising awareness of Fibromyalgia Syndrome. I am not a qualified healthcare professional. If you would like medical references for any facts quoted, just PM me.
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Re: sjogrens syndrome

Postby missusc » Tue Jun 29, 2010 3:17 pm

thanks linzWorld,

i'm booked with my gp next week as she is on hols, i think she will refer me to rheumy as having regular flare ups and painkillers not as effective, so really need to re-assess my meds. i'm on my hols at the mo had a few days in north wales in campervan but had to come home early, flare up. thinking of selling van now, not getting enough out of it. i'm worried about deterioation of my health, but coming on the forum does lessen the worry and find other people can express things better than me and can therefore help in a big way.

thanks

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Re: sjogrens syndrome

Postby roxichik » Tue Jul 13, 2010 12:23 am

Hi there
Just to let you know, I have Sjogrens syndrome and FM.
I had a lip biopsy done at the hospital to be sure I had SS.
It is an auto-immune disease and can affect just the eyes and mouth or other parts of the body.
It is common to have FM and SS together but SS is quite rare.
If you need someone to talk to. I am often here.
roxichik x
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Re: sjogrens syndrome

Postby missusc » Tue Jul 13, 2010 2:31 pm

hi roxichic

thanks for that, im using biotene mouthwash at mo helps a bit but tastes foul! also have lozenges and sip water all day and most nights. i would be grateful for any tips about dry mouth, burning throat. i am seeing ent this week as i have had major operations on both ears and still under consultant for that and they are looking at my sinus probs now. i use to say i wish i could change my head like wurzul gummidge, but now rest of body needs changing lol! am waiting for blood tests and doc referring me back to rheumy.

thanks
missus c :wave:

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Re: sjogrens syndrome

Postby roxichik » Wed Jul 14, 2010 12:23 am

Hi
I hear what you are saying about wanting to change the body or head.
Dry mouth can't be cured but sugar free gum with Xanthan is really good to encourage saliva. Sip drinks all day. Not big drinks as you don't want to overwork the kidneys and keep caffine (coffee, tea and coke) to a minimum. I drink lots of diluted squash and water - avoid sugars.
The thing that affects me more is the eyes but vasiline under and on the lids at night is really good.
MAC makeup is the only one that does not irritate my eyes (also good to the bunnies and fairtrade).
Keep your skin hydrated as well and you really dry out very quick. Moisturise at night so it has time to sink in.
SS is a very personal disease and affects everyone in different ways and to different degrees. It affects my whole body, skin, hair, eyes, nose and organs. All you can do is your best and keep smiling and making others smile.
Roxichik xxxxxx
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Re: sjogrens syndrome

Postby missusc » Thu Jul 15, 2010 6:08 pm

hi roxichik

thanks for that advice, will try them. still have a soh, well just about,

take care

missusc :D
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