Hi all,
I've been wondering, I only have dryness. Mouth, eyes and nose in that order. I have never had swollen glands, I did have a little pain in my paratids, very minimal and not for very long, a few mins max and that was before all this started but that's all, I did also have constipation as well but that seems to have worked itself out.
Is there anyone else out there with the same sort of thing and is this normal?
GgcJap
Ggcjap,
As a rule, I do not. It will happen on occasion, but not so often.
SjoDry
I too have no gland issues. "Only" dryness and joint pain. Luckily I also don't suffer from exhaustion as many do.
I don't have any gland issues, either.
I would not worry about the symptoms you do or do not have as everyone is different regarding the dryness.I had symptoms for 40 years before my eyes got dry but I had mouth dryness many years earlier that I never thought was a big deal. Had it for years and after about 15 years of it I started having cavities, root canals, tooth extractions and big time problems. This went on for over 20 years before I finally got my teeth pulled.
Now, some people have horrible dryness and mine was such that I just chewed gum or lifesavers and never thought a thing about it. The one thing all of us autoimmune patients need to remember is to not let the docs tell us what symptoms we should or should not have. The docs just read the book and think we should all follow what it says.
sick of
We all know that none of us follow the book of symptoms. I know I got of doctors telling me that I didn't have anything wrong cause I didn't have such and such a symptom. I am not scolding but just trying to build you up to stick up for yourself if the doctors start in on you. Interestingly enough one of the first symptoms Sjogrens patients get can be related to the nervous system. I had balance issues quite early. Also, the heartburn comes quite early for a lot of people also. Good luck with your pilocarpine. Irish
Thx guys and thx for the replies.
I understand everyone is different in their own way with their own symptoms but there are somethings that are the same. Is that because at a cellular level everyone's sickness is the same but DNA is different? im wondering.
What I should have also asked was how long have people had dryness only?
Is it possible to live your whole life with dryness only? Or inevitably do other symptoms and AI diseases rear their heads? On average that is due to everyone being different.
Does everyone's dryness tend to get worse, stay the same or even get better?
Cant help myself for wanting to know why, when most of the Drs dont even know. :)
@Irish: Your right, we really shouldn't let the doctors be telling us what symptoms we have. Especially when none of them really understand whats going on themselves. I understand this and do try to stick up for myself when needed. Im already on my 3rd Dr and thinking of changing again.
Wow you had dry mouth for quite some time. Do you have any ideas/your own opinion as to why after all that time your eyes went dry? stress, sickness?
When I look back I was having brain fog for about 1~2 years before any dryness(that I was aware of). I would be in the middle of a conversation and just forget what I was talking about or going to say. I just put it down to mental problems and it didnt happen so often so I let it go. Im guessing even if I went to the Drs they wouldn't have been able to put the pieces together. I still have a lot of it now I think. I also had bouts of heartburn come to think of it, but just thought it was something I ate or drank? Funnily enough I dont have it anymore though?
Such a confusing disease, such a confusing life. I liked it so much more when it was simpler, brain fog and all.
Thanks Irish
GgcJap
i also woild like what will be my future... but seems thts impossible. i also have most of all dryness and it changed my life a lot. regarding brain fog, im in my 60 and most of my friends have the same thing as you wrote and they do not have sjogren. most of my friends lost a big piece of memory an many many have heartburn without sjogren. in fact i think ive read that omeoprazole, zantag, etc are between the most used medicines with aspirine and i dont remember what
I have dry mouth, eyes, nose and dryer skin. It all started in January this year within a few minutes I kid you not. The mouth was pretty bad for the first 6 months. Now it's very mild sometimes almost nonexistent but my eyes are bad. They've been flaring after the first weekend of July when I wore my contacts all weekend. Haven't been able to wear them since. The eyes (since July) are consistently dry but vary in intensity with flares it would seem. This current flare is horrible. I just started Xiidra and a steroid drop. The drop has been helping a lot, but they are still dry. At my recent eye doc appt I was told my tear break up time was a 3 or 4. Normal time is around 10. I have a question as to whether people's eyes can get better and healthier? Like you, I'm on the younger side of this. I'm only 37 and haven't even hit menopause yet. It makes me nervous.
dryness in my eyes depend from weather, if its cold or windy or too sunny thy get anoying. i cannot stand ac and im so happy to live in a country where heating is not with ac but anyway even if our old radiators i have humidifiers in every room. they get very dry if i stay hours on my pc, as i usually do at least seven hours a day or if i read much.but till now its ok with systane ultra four times a day. the horror is my throat, a nightmare.
Hi all,
@Wal
Sounds very similar to what happened to me with my mouth, all within a few minutes and then dryer than the dessert. Did it get better progressively or just all of a sudden? Are you taking plaquenil or any other medication? Im wondering why it would get better over time? Not that thats a bad thing, Im happy for you. :) Im the other way around with my eyes though. I only use eye drops a few times a day(although we are going into winter here) but I do wake up with dry eyes and have to put drops in 2-3 times a night. If I have a good night only once. Im not sure what my drops are but I dont think they are steroid drops. They are the strongest I can get in Japan, or so im told by my Dr.
I haven't had these problems for long but from what Ive read all problems cant get worse, stay the same or get better so anything is possible. Its knowing stuff like this that keeps me motivated/positive. I cant speak for the menopause side of things but I understand your nervousness, its natural not knowing what the future will bring.
@ bluegardenia
I would love to know :) but the more we learn, the more we understand, which makes whats to come, may it be good or bad a little easier to deal with. Or thats the way I see it anyway. The dryness changes us as people in ways that we couldn't have imagined never mind someone that has never experienced it understanding it(another difficult thing I find) I have a lot of brain fog and Im only 38, It might not be related to Sjogrens but it seems to fit as a piece of the puzzle.
Im experiencing my first winter with dryness(I imagine it will be better than summer) and wasn't aware that the weather could effect my eyes, although they're not too bad at the moment. Its good to know thank you. The only thing I have done is buy glasses for the wind. We have a/c heating so I`ll have to pay more attn as to how that effects my eyes too. I also spend a lot of time on a PC for work and thought my eyes were tired but maybe its dryness? How do I know?
GgcJap
I think I got dryness when I did because that is the way this disease is. We get the symptoms we do when we do because that is the way it is. I think that I got the myasthenia gravis as result of stress from a traumatic brain injury. That is when the weakness and fatigue started. It took months to improve but I lived with it all my life and then it started getting worse. I had the dryness, arthritis, joint pain, bladder issues, reflux, tendon issues for so many years that I can't remember not having them. There are more issues but right not they escape me.
I just learned to live with it and do the best I could. I doctored a lot and was treated like a mental case. I would lucked out and got diagnosed with Bullous pemphigoid in 2003 by my dermatopathologist. He did lots of blood work but never came up with anything. In 2003 I got diagnosed with sjogrens by my ENT and Rheumatologist---still no dry eyes until about 2 months after this diagnosis plus terrible muscle pain and could hardly get out of the recliner.
These symptoms come and go and there is no rhyme nor reason for it. I think a lot of the things that we get are brought on by the stress if everyday living as people with autoimmune need lots of rest. Even the weather changing will bother me in one way or another. We have such crazy symptoms that come and go and doctors should not just go by the book. Not one of us go by the book. That is what drives the doctors and us so crazy. Hope this doctor can get the picture. These doctors need to lighten up and just get some info from other doctors to help them with there decisions and diagnosis. Just my opinion. Irish
My dry mouth gradually got better. I never took mess for it. Just sucked on lemons and lots of xylimelts that you can order on Amazon. I used to fall asleep with the Xylimelts. The dry eyes for me is so much worse than the mouth was because I'm dependent on my glasses to see. Not wearing contacts for outside water activities with kids is a major inconvenience. Plus I can't wear sunglasses. They make special ones for dry eyes. My rheumatoid I saw a month ago totally blew off my symptoms. So, at the advice of my eye doc I was told to find a new rheumy or find a naturopathic doc and go that direction. I forgot to mention I have developed mild fatigue in the last month. I basically pass out asleep if I sit down for a few min. Something new. Not debilitating, but new.
Hi Irish,
Sounds like you e been through a lot and came out heads up, your an inspiration. I understand the mental case bit, I'm sure my doctors don't believe or just don't listen to half of what I tell them.
I agree a lot of these things are brought on by stress. A lot of doctors know only the book and that in itself is more stress. Their pride gets in the way of our healing, a sad but true fact of life. If more doctors worked together(put their heads together) progress would be made for sure.
Hi Wal,
I'm glad to hear that your mouth got better, I know that is an individual disease but it still gives me hope. I need hope! :) I can't get xylimelts here but I'm thinking of ordering them online.
Sorry to hear about your eyes, mine aren't too bad, yet(I don't wanna jinx myself).
The disease seems to be different per person but the doctors are mostly the same aren't they. Everyone prays to find a special one. I think im also yet to. When I was first hit with it I would also pass out if sitting down past 7pm but that seems to have gotten a little better with time. I don't like new, especially when it comes to this. I hope we don't get anything else new, none of us on this site need it.
GgcJap
There is the inflammation factor to the disease.. so for patients who have a treatment where this is managed there is less likelihood of more complicated, ongoing symptoms. As you may note in the posts Plaquinel alone is effective for many, however for some combinations of other suppressants are necessary. So a mixed bag. We humans are complicated.
I needed to learn about environmental factor (no matter how insignificant they were before SJS).
Even having the air vent hitting my face/eyes in the car is a irritant/drying factor now.. so I simply adjust them away from face.
When I do gardening I put a small drop of Genteal in eyes (as a protectant )from pollen, dust, etc. Not enough to blur vision. Sometimes I do this during the day when they need added soothing as well.
Certain foods I avoid.. sugary dessert make me thirsty.. some my eye area will swell.. so inflammatory.
Salty foods.. no way.
I mentioned in your other post that every so often when brushing my teeth,, I use the brush to give my glands inside lips and cheeks a massage, clean the area.
I do get earaches from dryness.. do I am aware of that.
Hi QD,
I agree, which is why I'm so keen to start plaquenil but my doctor doesn't want to hear about it. Depending on what it is I have he's thinking about steroids. I'm at the Drs now and will find out in a short while. Complicated we are :)
I'm slowly but surely learning about the environmental factors. My eyes aren't so bad at the moment(touch wood) so I don't have to think too much but I have found like yourself I don't like the car fan blowing onto my face also my house heating is a/c so I've found that also dries my eyes a bit even when it's set to heat and humidify. I also wear glasses everywhere I go.
I'm in the process of reintroducing from the AIP diet and to this point haven't found anything that is noticeably inducing symptoms. I just got my allergy blood test results back and they showed the only things I have a severe reaction to is dust. I'll still reintroduce one thing at a time though. I think we all know how unreliable blood tests can be.
I do find that soy sauce makes my lips dry, could it be the salt? I haven't eaten sugar since this started but I so want to.
GgcJap
Following along on this thread. Salty things definitely made my mouth more dry during its bad phase. Even now my lips are still enough dry that they stick to a pretzel while eating. I used to get choked up on almonds too when swallowing..and bread. I haven't started any diet yet but plan too first of year. I wanted to mention that since all my symptoms started, that I'm using a dry mouth floride rinse every night. I didn't have any cavities at my recent checkup in July despite the bad dry mouth preceding the appt. I use ACT dry mouth floride. It's also supposed to soothe irritated tissues in the mouth.
I think I'll def have to cut back on salty I think. My lips are quite often dry too. I don't think I could eat pretzels, almonds or bread at the moment. Good luck on your diet, I went on AIP for a month and have since added back in rice, mayonnaise, soy sauce, milk and haven't had any adverse effects that I'm aware of. I hope to be able to add everything back in eventually.
I use fluoride toothpaste and also a fluoride mouthwash. I hope to be like yourself and have no cavities. I use Japanese brands(can't find any of the ones mentioned on this site) i have a friend coming over in January who will bring me some biotene toothpaste and mouthwash, also some oral 7. I'm looking forward to using it.
GgcJap