Does anyone have dry eyes, but not dry mouth?
No. I have both!
It's an interesting question. We typically think of Sjogren's as dry eyes and dry mouth, but there can be different levels of involvement. For me, it's dry eyes, dry mouth, dry nose, etc. But it's limited to there, along with some small fiber neuropathy throughout. Others may be dry EVERYWHERE. It's variable.
Thank-you. I have dry eyes, dry nose (never thought about that as part of it) and other sx., such as neuropathy. But I don't have Raynaud's. They are just trying to figure out what my illness is. I have a positive Ssa.
Hi,
I had severe dry eyes for 3 to 4 years. I was on Restasis and using artificial tears several times a day. About a year ago my dentist mentioned my mouth was somewhat dry and recommended I start using a fluoride toothpaste at night. This had not been noticeable to me at that time. About 8 months ago I all of a sudden developed very dry mouth and at that time was diagnosed with Sjogren's Syndrome.
Thank-you for your reply. I did not know if the two could be set apart by a period of time. I actually have too much saliva, but my eyes bother me. Still not on drops yet, but I am always rubbing them and they feel gritty. I am getting an eye exam soon.
I have a few other sx., but we do not know yet if I have Sjogren's or not. It seems the sx. overlap with that of so many different illnesses. What do you do for your dry mouth?
Lemon drops. But you have to be careful because of the teeth. I try to follow with water but it really does stimulate the salivary glands.
I have dry eyes all of the time. Dry mouth only comes around from time to time. There is definitely a lessening overall as I definitely need water next to me to eat but that seems to be more towards the throat, not the mouth. SS is weird. Funny about the lemon drops…my rheumy told me not to do that because it can also add to the inflammation by irritating the salivary glands. (its actually why lemon works). He has me staying away from citrus (and acidy) stuff.
This is an interesting and varied disease it seems.
How many of you also have Raynaud's? I don't have that, although I am more sensitive to cold than I used to be (hands mostly). And my eyes do not tolerate bright lights anymore.
I've had dry eye for probably 15 years now. I had to give up on contacts about 14 years ago. I've had dry mouth to some extent my whole adult life. I've always had to keep a bottle of water nearby, and it was tough when I was teaching, I would dry out easily.
But. . . . . it didn't get to be a serious problem until a few years ago. Almost overnight my mouth was super dry, I was having trouble sleeping, and was chewing gum all of the time to try to keep my mouth moist. My mouth looked horrible inside. At the same time, my eyes became painfully dry, where there were visible dry patches. I started using Restasis for my eyes, and wound up getting top and bottom tear ducts plugged. I also started using Evoxac. It's not perfect, but it makes a big difference. I also use a night time ointment for my eyes, and will use warm compresses when my eyes are bad. So for me, the worst of it hit in the same time frame.
Fatigue I've had for 9 years, but I have another autoimmune condition, so I have multiple reasons for fatigue.
Gethealrhy2, what is the next step for you for diagnosis? What have they done so far?
I've developed Raynauds over the last year; it's getting worse but luckily as yet isn't painful. I'm really sensitive to cold- even eating some chilled food like fruit salad can set me off!
Gethealrhy2 said:
How many of you also have Raynaud's? I don't have that, although I am more sensitive to cold than I used to be (hands mostly). And my eyes do not tolerate bright lights anymore.
Oddly, I have suddenly noticed my mouth is dryer than usual. I am usually one of those people who have been embarrassed so many times by spraying spittle on people when I laugh or use certain words. Now it is probably more like a normal person's, but dry for me. I am sorry you have had this for so long.
Stoney said:
I've had dry eye for probably 15 years now. I had to give up on contacts about 14 years ago. I've had dry mouth to some extent my whole adult life. I've always had to keep a bottle of water nearby, and it was tough when I was teaching, I would dry out easily.
But. . . . . it didn't get to be a serious problem until a few years ago. Almost overnight my mouth was super dry, I was having trouble sleeping, and was chewing gum all of the time to try to keep my mouth moist. My mouth looked horrible inside. At the same time, my eyes became painfully dry, where there were visible dry patches. I started using Restasis for my eyes, and wound up getting top and bottom tear ducts plugged. I also started using Evoxac. It's not perfect, but it makes a big difference. I also use a night time ointment for my eyes, and will use warm compresses when my eyes are bad. So for me, the worst of it hit in the same time frame.
Fatigue I've had for 9 years, but I have another autoimmune condition, so I have multiple reasons for fatigue.
Did it by chance start with red finger tips for a long time before Raynaud's?
Jules said:
I've developed Raynauds over the last year; it's getting worse but luckily as yet isn't painful. I'm really sensitive to cold- even eating some chilled food like fruit salad can set me off!
Gethealrhy2 said:How many of you also have Raynaud's? I don't have that, although I am more sensitive to cold than I used to be (hands mostly). And my eyes do not tolerate bright lights anymore.
I don't know what the next step is. We are still trying to figure it out. I may or may not have Sjogrens. I wonder about beginning Raynaud's. I have a positive Ssa test and some symptoms that suggest it. My eyes are dry, but not bad enough for treatment yet. I have a lot of aches and pains. My blood work has sometimes been a little off and then normal. My spleen was slightly enlarged once, then normal. I get tired, but not numbing fatigue. I have Fibromyalgia which I have had for years. The doctor wonders if I might have Rheumatoid arthritis. I am not typical. I have noticed that my finger tips have been quite red for years, especially when cold. I have been diagnosed with localized scleroderma too, but the new Rheumatologist, who is very good, is sending me to a dermatologist to get a second opinion. The biopsy was not conclusive, although Stanford University decided it was scleroderma. I have not had noticeable thickened skin though I have had pan with it. Just don't know.
EnjoyLife said:
Gethealrhy2, what is the next step for you for diagnosis? What have they done so far?
It sounds like you have a good rheumy, so that's an advantage, and hopefully they'll be able to make sense of all your results! I do have red fingertips- I hadn't really thought about it/ noticed it until recently. My fingers don't seem to go white, they go blue straight away. It's good that they're looking into scleroderma, and hopefully soon your doctor will be able to put everything together and work out some good treatment for you- hang in there!
Thank-you for that. As you know it can go on for years before an actual diagnosis is made. Has been with me. Taking it a day at a time. At least I am not as bad off as some. I function pretty well. Have to. I am also the caretaker of my husband. Of course that stress does not help. Just dealing, day to day. I am okay though. Thanks. :)
Sorry to hear you are dealing with so much. Familiar with the odd redness too. For me it happens in the cold… I’m glad you have a doc who is paying close attention. It helps so much. Stress is tough, you’re right. Please keep us posted on how things are going.
I've had Raynaud's since forever. I've had it since I was a little kid. It became truly problematic, with frostbite, the winter after my first child was born. Since then, no matter how careful I am, I get frostbite at least a few times a winter, usually on my fingers. My feet I've learned how to really protect. Oh, plus I keep gloves by the chest freezer that I put on even in the summer.
The inability to tolerate bright light can be due to the dryness.
Gethealrhy2 said:
How many of you also have Raynaud's? I don't have that, although I am more sensitive to cold than I used to be (hands mostly). And my eyes do not tolerate bright lights anymore.