Hi everybody, kinda new to the site but wanted to say hello, I have been having these dry mouth dry eyes for about 3+ months. It’s really weird cause it just came out of no where. My pcp doesn’t know what to do with me, all test have come back negative. My tongue/mouth feel like it’s been abused,punished because it hasn’t been right for a long time. Taste buds in back are enlarged. Also have a dry white yellow coating on tongue, do you guys have this too? My pcp thought I had gerd but I don’t really have the burn, they put me on every acid reflux drug imaginable , but nothing has helped, about 3 weeks ago my eyes started get really red, you can see the veines in them. Also lips got dried up too real bad to where they hurt. The lips have gotten better but mouth and eyes are still bad. Going to see 3 diff specialist in the weeks to come. Tomorrow is the eye dr,we’ll see what he says. I’ve been gluten, soda , coffee and junk food free for about 5 weeks now. Nobody understands the hell we go thru, that’s for sure, glad I found other people that do.
I think your screen name says it all. Sorry to hear you are going through so much. I does sound like what a lot of us have dealt with. And its not uncommon for tests to come back negative. It seems to be on of the more frustrating parts of Sjogren's. It causes serious delays in diagnosis sometimes. Have you tried keeping a symptoms diary to discuss with the doc when you see him? It may help put all of the pieces together. We do have to be our own best advocate. Please hang in there and keep us posted on how your are doing.
What I have garnered from this wonderful website is....you have to be your own advocate. You know how you feel. If you don't have a doc that will listen, find another one. Our symptoms are real! You need a Rheumatologist, and if you can, find a dentist who has knowledge of SS. I'm currently looking for a new dentist.
Sending all the best wishes I can. You have come to the right place.
New to site also...looking forward to the interaction with others that understand the immense issues!
Welcome to the website...I wish I could tell you it gets easier but it doesn't. Each and everyday you could have a new symptom of something else. This site has wonderful information and it really does help to see how others are handling the exact issues your having. As Connie Stated Be Your Own advocate. Your not crazy, your sick. and research as much as you can. Try not to get caught up in the circle of Doctors. My experience has been this: I can't swallow so they send me to a gastroenterologist. Acid reflux...I have no acid coming up, I have no burning chest. I just can't swallow. When I get in the sun I start to get hives. Dr Sends me to Dermatologist must check for skin cancer. (no Skin Cancer) So you tend to get put in a circle of DR.'s and no one helps with the problems. Emotional support on this Site Is fabulous!!!! Good luck and let us know how your doing.
I agree .lol I’ve seen 2 pcp an ent a gastro ophthalmologist and finally a rheum . I feel like a pinball and every week I have another spot on my arm to hide because I gave blood or had an IV.
hope your doing well, were you able to figure out your situation ?
it is frustrating not knowing whats going on....
No I haven’t figured out anything, my test come up negative, but rheum said clinically I have sjogrens based on dry eyes and mouth, he said since there’s no cure and just treatments it really doesn’t matter if it’s proven, because the end result is the same.
Yea… I know either way treatment will be the symptom based, how do u cope with your dry mouth ??? It’s very bothersome to me!
Givemestrength, I hope you're starting to get help now. I was diagnosed with Sjogren's Syndrome in October, 2014 but I suffered with symptoms before that which kept getting worse FAST. I had no idea what was happening to me. I was extremely tired all the time and practically bedridden, my joints started hurting and I felt really weak and couldn't pick up anything heavy anymore. Then my feet were freezing cold and even started turning a pale and bluish color. I already had hypothyroidism, so at first I thought it was somehow related to that. I had no idea what an autoimmune disease was. But I kept getting worse. I literally thought I was going to die. The doctor I had at the time was an idiot and wouldn't listen to me. He kept trying to dismiss all my symptoms as "anxiety." Even when a blood test showed I was positive for ANA, he still refused to think I had an autoimmune disease, just because other tests were negative. It was absolute hell. I thought I was just going to lay in bed and die, because no one would take me seriously. Not even my friends or parents. I finally had enough, and I changed doctors. That probably saved my life. The primary doctor I have now is much better. I started seeing a rheumatologist, and he is the one who diagnosed me with Sjogren's. He already suspected it, but I finally tested positive for SSA antibodies and that confirmed it.
Please don't take any crap from anyone. You know your body better than anyone ever will. You know when something just isn't right. Stand up for yourself. I know it's hard and scary when you don't feel well, but you have to be insistent. If a doctor isn't helping you, then get a different one. Your health and life are on the line. The fact is that Sjogren's is a serious disease. It is MUCH more than just dry eyes and dry mouth. A lot of people have that misconception, but it is a systemic disease, which means that it can attack many areas of your body, including vital organs. For me, the fatigue was the worst. I couldn't do anything. Dry eyes and dry mouth were actually the last symptoms (and for me, the least of my problems).
Also, it makes a huge difference actually being diagnosed with Sjogren's Syndrome because then at least you can get treatment. There isn't any known cure for it, but there is medicine that can help. I'm taking Plaquenil and Methotrexate now. And I honestly believe the Plaquenil has kept this disease from getting worse. It really gave me my life back. It helped a lot with the fatigue...I still get tired easily sometimes and I will never be like how I used to be before all this, but at least I can go out and do things now. On a good day, my energy level is maybe about 70% of what I used to be. Before the medicine, I was probably around 25-30%. It was horrible. I also think the Plaquenil has prevented the Sjogren's from attacking my kidneys and liver. As bad as I was deteriorating, I'm scared to think of what would have happened to me if I didn't get treatment.
The difference between treatment and no treatment is huge. I don't mean to scare you, but dry eyes and dry mouth are not going to be the biggest problems you'll be dealing with. A medicine called Pilocarpine can help with dry mouth, and there is also over-the-counter stuff that can help, like Biotine gel. I'm still trying to figure out what works effectively for dry eyes. (Visine for dry eyes wears off too fast for me). But it seems like pretty much everyone I have talked to who has Sjogren's ends up getting many more serious problems. Most people seem to get really bad fatigue to some degree, along with cognition problems like poor memory and concentration. Medicine like Plaquenil can help, but you will still have some bad days sometimes. You can still have a fun, productive, enjoyable life with Sjogren's Syndrome but you just need to be aware that it will change things, and that it is a serious disease that you have to monitor closely. Make sure your doctors are seeing you regularly and that they keep an eye on everything (especially your kidneys and liver). Then all you can do is take things one day at a time.
Great honest advice you've giving, I couldn't explain it any better. It does change you, I am not the same person as I was. I feel as though it ages you too. I feel as though I have been through 10 birthdays since having my 1st flare. But I can say yesterday and Saturday was great days for me. I felt great. about 70% like my old self. I use Systane for my eyes. It feels good but I still have to use it lots in a day. good luck.
Gatewaycityca said:
Givemestrength, I hope you're starting to get help now. I was diagnosed with Sjogren's Syndrome in October, 2014 but I suffered with symptoms before that which kept getting worse FAST. I had no idea what was happening to me. I was extremely tired all the time and practically bedridden, my joints started hurting and I felt really weak and couldn't pick up anything heavy anymore. Then my feet were freezing cold and even started turning a pale and bluish color. I already had hypothyroidism, so at first I thought it was somehow related to that. I had no idea what an autoimmune disease was. But I kept getting worse. I literally thought I was going to die. The doctor I had at the time was an idiot and wouldn't listen to me. He kept trying to dismiss all my symptoms as "anxiety." Even when a blood test showed I was positive for ANA, he still refused to think I had an autoimmune disease, just because other tests were negative. It was absolute hell. I thought I was just going to lay in bed and die, because no one would take me seriously. Not even my friends or parents. I finally had enough, and I changed doctors. That probably saved my life. The primary doctor I have now is much better. I started seeing a rheumatologist, and he is the one who diagnosed me with Sjogren's. He already suspected it, but I finally tested positive for SSA antibodies and that confirmed it.
Please don't take any crap from anyone. You know your body better than anyone ever will. You know when something just isn't right. Stand up for yourself. I know it's hard and scary when you don't feel well, but you have to be insistent. If a doctor isn't helping you, then get a different one. Your health and life are on the line. The fact is that Sjogren's is a serious disease. It is MUCH more than just dry eyes and dry mouth. A lot of people have that misconception, but it is a systemic disease, which means that it can attack many areas of your body, including vital organs. For me, the fatigue was the worst. I couldn't do anything. Dry eyes and dry mouth were actually the last symptoms (and for me, the least of my problems).
Also, it makes a huge difference actually being diagnosed with Sjogren's Syndrome because then at least you can get treatment. There isn't any known cure for it, but there is medicine that can help. I'm taking Plaquenil and Methotrexate now. And I honestly believe the Plaquenil has kept this disease from getting worse. It really gave me my life back. It helped a lot with the fatigue...I still get tired easily sometimes and I will never be like how I used to be before all this, but at least I can go out and do things now. On a good day, my energy level is maybe about 70% of what I used to be. Before the medicine, I was probably around 25-30%. It was horrible. I also think the Plaquenil has prevented the Sjogren's from attacking my kidneys and liver. As bad as I was deteriorating, I'm scared to think of what would have happened to me if I didn't get treatment.
The difference between treatment and no treatment is huge. I don't mean to scare you, but dry eyes and dry mouth are not going to be the biggest problems you'll be dealing with. A medicine called Pilocarpine can help with dry mouth, and there is also over-the-counter stuff that can help, like Biotine gel. I'm still trying to figure out what works effectively for dry eyes. (Visine for dry eyes wears off too fast for me). But it seems like pretty much everyone I have talked to who has Sjogren's ends up getting many more serious problems. Most people seem to get really bad fatigue to some degree, along with cognition problems like poor memory and concentration. Medicine like Plaquenil can help, but you will still have some bad days sometimes. You can still have a fun, productive, enjoyable life with Sjogren's Syndrome but you just need to be aware that it will change things, and that it is a serious disease that you have to monitor closely. Make sure your doctors are seeing you regularly and that they keep an eye on everything (especially your kidneys and liver). Then all you can do is take things one day at a time.
Gateway, you said it really well. Thanks. For as long as I've dealt with this, it still helps to hear someone else describing what I go through and know they get it.Keep advocating for yourself, Gimmestrength.
Keep us updated with what happens with your appointments. And good luck finding speedy and educated answers!
update , ophthalmologist put me on restasis , I just started it today, very expensive. Also had dr write rx for evoxac ,I think it works slightly better than the pilocarpine. I also started plaquinol. I keep thinking I’ll get better but it just doesn’t happen. My hardest thing is going to work. It’s hard to work when you don’t feel good and no one knows, I don’t tell anyone cause I don’t understand what’s going on myself. I don’t want to labeled as a sick person. I’m still waiting to see rheum about all my lab results they ordered a lot of weird complicated test(14vials of blood) I counted…
The meds can take a long time to work. Plaquenil takes around 4 months to get to full strength. Hang in there…sometimes its a matter of figuring out what combinations work best for you. I totally get the weirdness of feeling horrible but not letting on to anyone. Its a no-win in some ways but I think we all do it to some level.
It’s tough situation… I hear you… I am having hard time to cope with symptoms…
But we are not alone… We are all here to support ! I hope you not only better, stay strong… That’s actually what I need…
Let me know how the medication evoxac works for u. I jus got med… Have not tried yet
Good luck to you. I know how you feel. I too work everyday. Even though people know about what I have, it's not something visible. So, you feel like crap, but look just fine, they don't get it.................and it's a difficult condition to explain.
Please let us know how Evoxac works. I see a new Rheumy next month and I'd like to give it a try.
It sounds like things are moving along. I’ve been using evoxac for a few years now and it works really well for me. I hope that you get a similar result.
For your eyes, a lot of people have ducal plugs. If your treatment is not working well enough, this might be something to talk about with your doctor as well. There have been discussions here on Restasis and plugs also. You can always search the forums.
Stoney, tell me more about your experience of evoxac plz ?
I tried temporary collagen eye plugs and the didn’t do anything, dr said he could cauterize the drain for a permanent plug but the temps didn’t work so why would I want to burn them shut. The evoxac seems to work a little faster and a little longer for me, I take 3 a day.morning mid day and one before bed, keeps me asleep ,except for the waking up to urinate,
Has anyone else had bubbly urine, mine has been like this for about a month or two, numerous urine test have shown no protein in urine.
my test anti strep, complement component c3c and c4c, , immunoglobulins a ,g, m , hla b27 antigen, protein total,ribosomal p antibody,protein electrophoresis, I don’t know why I had a strep test done , kinda weird but I t it did come back high, everything else was normal although I still have gotten formal results