I have been diagnosed with this and I’m in pain most days and would like to have discussions.
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
@oregongirl I, too, have fibro and RA in addition to Sjogren’s, Restless Leg, and spinal stenosis. I am just like you. I do NOT like taking narcotics. I take Cymbalta and trazadone. I had bad side affects with Enbrel and Plaquinil. I haven’t been on any thing for a while and my rheumatologist wants to try me on methotrexate. I am not too thrilled about it. I try to eat healthy and stay active. I used to be very active and involved in extreme sports, but I can not do any of that any longer.
I find water exercise very helpful. I live in Texas, so at least I don’t have to worry about super cold weather. It does get unforgivingly hot, however! I do positive thinking and pray. But the pain is constant. Warm jetted tub helps me and sleeping on a thermapedic mattress helps a LOT! I worry about it getting worse as I age (I am 56). My husband is good at helping out, and I still work part time. I worry when I won’t be able to work at all. Disability doesn’t pay that much, and I have worked for the same person for 37 years (who isn’t in great health, either). I pray you find some relief. I also have good and bad days. I am home today because a front is coming which causes my body to flare!
I have recently been diagnosed with sjogrens and knowing this I now know I have had it for many years yes I have the typical dry mouth dry eyes severe sinus problems I have tinnitus in my ears I dont know if thats related to sjogrens. The Dr. Who diagnosed my Sjogrens totally minimises my disorder to the dry mouth eyes and sinuses however I have been having problems with the bile ducts in my pancrous and liver I have had 3 sugeries in 5 months to put stynts in my bile ducts to help open then up its been 3 months sunce my last surgery and I think its time for another as my upper right side is in a lot of pain again and just last night on the sjogrens foundation websight I read about primary biliary colangitis and autoimmune pancreatitis that are symptoms of sjogrens and describe me to a T however my Gastro Dr just seems to think im crazy so much so that he perscribe trazadone for me telling me I was making up my pain yet he is the one who has had the stynts put in me he however states that my pancreas should not be in pain he doesnt know why im in pain hence the trazadone. I also in a year have lost almost all of my top teeth and will be getting my dentures next week and that will provide a host of new problems with my severe dry mouth yes I use all of the dry mouth meds yes they help yes I use drops for my eyes as they already have scarring due to the dryness and I use a sinus spray for my sinuses. I also lose sense of smell and taste at times I am severly tired all the time and just 2 years ago I was avery active person and 4 years ago when I lived in the mountains of NC I was a single mom who worked 2 jobs and also went hiking in my free time. I am recently on methatrexate for sjogrens and psoriatic arthritis and im on pain meds for a past back surgery and joint pain it helps some but of course makes the mouth even drier. My main problem is not knowing where to turn for this pancriatic and liver bile duct problems since my Dr’s like to dismiss my sjogrens disease. I think I see an appointment to the Mayo clinic in my future. If anyone has any sugestions my ears and eyes are wide open to anything at this point I have been almost bedridden fir a year and a half and I would love to have some form of my life back I just want to be abke to do small things like clean my house and go to the store once and a while. Oh my new problem is severe headaches anyone else have that problem?
I forgot about the terrible brain fig I suffer from its no joke its seriously bad to the point that my mother in law comes by frquently during the day to make sure I have put the towels in the oven and turned it on or something. Sorry to have to post all of my problems but im in serious need of some guidence, help and just some compassion would even be nice.
I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.
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My nausia is so bad I take zofran once or twice a day depending on how bad my nausia is because I was throwing up 6 to 8 times a day if you read my post tho im also having liver and pancriatic bile duct problems thay I think are due to sjogrens syndrome so that may account for my throwing up not sure but yes I have a lot of nausia
@kkteel1, I’m sorry you’re going through so much, and most of all, that you don’t have an understanding doctor. Who diagnosed you? Do you have a rheumatologist? My rheumy is the only one who understands. If you don’t have a doctor who is informed about Sjogren’s, you might consider searching for one who does.
Yes my Rheumatologist is the one who diagnosed me and she just acts like its nothing and just try and control my dry mouth eyes and nose. She put me on methotrexate for my psoriatic arthritis and it has helped and has helped clear up my psoriasis. The wierd thing is that I am having all these liver and pancreous bile duct problems and none of my DR'S are putting 2+2 together but it seems from what im reading that my bile problems and pancreous problems could possibly be related to my sjogrens
@kkteel1, Thank you for your post. I would like to welcome you to Mayo Connect and say that we are pleased to have you join this discussion. I want to provide this link to information on Sjrogen’s. I invite you to look at it since you have been recently diagnoses with this autoimmune condition. http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
I cannot begin to imagine how frightening this whole situation must be for you. I am concerned that from what I am reading, there is no one person who is coordinating your medical care. With all of the symptoms that you are describing, it is no wonder that you are looking for some “guidance and support, and compassion”.
I am not a medical person, but I am concerned about your mention of stents. That is the only part of your message that touches on my experience. How long ago were they inserted, and do you have any follow-up for that? I once needed stents in my bile ducts, but they slipped out of place, and were useless. Might be something to look into.
We are here to support you, and we do have good ‘listening ears. But we are not able to provide any diagnosis.
Does anyone live with you or near you, to lookout for your comfort and needs?
I’d like to add my welcome too; you don’t have to be sorry at all! This is what Connect is all about: sharing, supporting and learning from one another’s experiences.
@jewel8888 @oldkarl @marylou705 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne do you have any insights for @kkteel1?
Greetings from Jacksonville! Horrible dry eye and dry mouth. Using 4 over the counter eye products with hot wet compresses…they are the best for eyes. Complicated with dystonia in eyes, cervical, tremor in voice box and GI tract.
Water as soon as I drink it, it flows downhill. Been on a Plant Based Diet and helping lower GI tract. Now 80% off of gluten and have not had my ongoing spasms in my esophagus that stops me from breathing. Spasms from dystonia with sicca equals weird body I’d say. Test positive for Scleroderma with High Titers…? Have the F-word, fibromyalgia, designer bones = osteopenia, no balance on right side from an infection in right ear years ago.
Teeth enamel pretty much off with bad recession of gums. So I need to put a car in my mouth, to have a good smile as I once did. Can’t afford the teeth reconstruction, like buying a new car?
Dry eye with dystonia in bright light closes my one eye, wearing a hat and FL-41 dark glasses that wrap around.
People think I wear the hat and dark glasses day and most nights for fashion…the Maui Jim’s filter is the best for glare on the market I have been told. Glare, bright sun is resulting in moving back up to a city with public transportation, DC area. Hate to not have the Mayo Clinic 12 miles away. They have made me successful with this weird body!
Any suggestions? I’m blue eyed, DNA Scandinavian, British, German, Dutch ,French, Irish so I got what I got!
Hard to move but I need public transportation, and not live in a car society.
Comments, please……wishing you all well, Kristina
Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/
CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?
i had plugs put in all 4 ducts. sorry to say: no relief however, restasis used twice a day helps somewhat. there is sort of an antibiotic in restasis that helps prevent infections because of the dry eyes. i have been on restasis for about 10 years now. i think the plugs might work if your dry eye problem is not to severe. trying to help.
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