Possible Sjogrens Disease

I need something. I’m so tired of being unwell. I have severe digestive motility and it’s a nightmare.
I’ve been bordering Sgogrens since 2017 and it went on the back burner. My skin is so dry,itchy and rash in different places. My scalp itches like head lice but I don’t have any. My eyes are severely dry. They put in tubes but I get up in the middle of the night and driven them in eye drops to see. My mouth is severely dry my tongue looks off. I suffer sores inside my mouth. My body aches and all my fingers on palm side under the skin have off white lumps. I’m so tired of no energy.
I do have hypothyroidism,Raynauds too. I’m just lost. Sometimes I think they lose interest when you get older and doctors don’t care as much. YES, I’ve tried and done it all. Nothing works.

please do let me know. im a praying person, so i'll pray 4 a good outcome!

Hi. I’m not sure what your symptoms are to help you better but I told my rheumatologist all of my symptoms and changes. To this day, I keep telling her everything because this disease affects every part of my body and all its systems. I also made sure I had the specialist to treat and evaluate each problem. I asked her what I can do to ease some of the symptoms or prevent them from getting worse. If you can get a specialist who understands Sjogren’s disease not as dryness but as a systemic disease then that’s a better doctor for you. I have come across some specialists who thinks that I’m only suffering from dryness.
I hope that these help you get started with your care. I also would suggest joining a support group because there will be times of difficulties. It makes it easier to have someone who truly understands what you’re going through. Take care.

Thank you!
Took some searching but I did find someone who specializes in sjogrens.
See her Tuesday!
Fingers crossed...

I feel for you. I have the same symptoms. I don’t understand why you didn’t have treatments from your dermatologist. I get phototherapy for my skin itching and rashes. I haven’t had much of those symptoms but I am still getting treatments. I use Cerave twice a day. I avoid hot water for showers and regularly do my skin care from my dermatologist suggestions and teachings. For my dry mouth, I take Pilocarpine 3X a day. I use humidifier at night. I hydrate, have lozenges, sugarless gum and biotene spray, toothpaste and mouthwash. I also use Xylimelts for my dry mouth. I see my dentist regularly.
I use lubricating eye drops, lubricating ointment at night, Restasis 2X a day, and the wet warm applications to my eyes for 10 minutes twice a day. I also got those plugs to each eye placed by my ophthalmologist.
I don’t take pain pills but I’m on Methotrexate for my inflammation and pain. I have pain everywhere.
I get easily fatigued too. I balance my rest and activities all day. I take naps during the day and try to get a good night’s sleep. I also do routine exercises that I have been doing during my physical and occupational therapy. Eating healthily helps. I have a dietitian.
For my bowels, I have a gastroenterologist and she placed me on daily Miralax for the dysmotility. I also had a colonoscopy. I stay away from caffeine, spicy food, whole grain food, etc.
I hope these help you. Take care.

Thank you everyone who took the time to answer and give input.
Tomorrow is my big day!

No white lumps.... i have severe IBS/constipation from Parkinson's. No tubes...what are they for? Yes to skin and eye problems, iktchy everything, especially scalp, always a swollen-feeling tongue and consequent not-wanting to eat/inability to eat because of tongue, inside cheek biting, dry-mouth...possibly because of Parkinson's, but who knows, yes to Raynaud's, borderline on the thyroid, and yes, I've heard too many doctors mention my age as a cause for most everything. The motility? I refused a motility test recently, because I was having a bad day : Parkinson's and one too-many botched referrals so I blew up MAD and loud, then cried all the way home, and for the next 4 days. What I seem to consistently have (when consistent applies) is 3 days of violent but short, quick diarrhea (not nearly enough to empty an intestine) followed by 3 days of painful constipation. My belly gave up....it just stays swollen. Always. I'm 76, but I look like a skinny 6-months-pregnant old lady. I live with constant belly pain (and other related places), but consistent partial relief came when I got onto AM treatment: high dose Linzess, plus 2 stool-softener gels, and an anti-gas, then one more stool softener at lunch. I do not take linzess on an empy stomach and then wait...I was told to do the more radical Take with Breakfast by my GI. At least it's tolerable. Hope that helps. p.s. Have you been checked out for Parkinson's? Lots of what I have going on is common among PD patients.

@bruizersmom the dry scalp is frustrating never having lice and itching all over like I do is embarrassing. My tongue is almost always white, and a purple dot on my lip. My eyes are dry (I tore the tissue on my eye about 13 years ago) I’m now prescribed Miebo it’s an oily drop. Having a failed back surgery and no one wanting to look further just put in a stimulator my frustrations are thru the roof with doctors after we turn 50 it seems we just become a number to the doctor . Which I blame corporate for not allowing them the time they need. If you wouldn’t care it would be nice to see a photo of the white bumps on your hand

How did you get your insurance to cover Meibo?

I have a new pcp in August and I’m going in with a nice voice but a list of symptoms,photos and past lab results.
This is a true story. My last pcp thought what I was experiencing, how odd it was, I could be suffering from depression. Now, I do suffer anxiety because I have bilateral tinnitus and some days do get extremely loud for me and it can give me anxiety.
I was so sick of listening to him say this to me he said I’d like you to see a psychiatrist. I was all in, to prove his wasted diagnoses, his time and mine.
I said absolutely, your choice too. I get a 90 minute visit, lovely doctor who I felt like I shared my life with and she said I will send your doctor a letter. In my opinion there is absolutely no types of depression I can diagnose you with. You are a 69, well groomed, well spoken woman. I can see the tinnitus as being tuff sometimes but you absolutely don’t suffer depression. Of course she went on and on with other things in her letter.
I made an appointment and met with my doctor and said I have suffered from something. I hope it’s not serious because your diagnosis is depression. I hope you have learned something from our experience. Just maybe not everyone who has odd symptoms suffers depression. My rashes, bumps on my fingers, crazy itchy scalp should be a sign to do something and you did, you sent me to a psychiatrist. You are wrong and I’d be wrong to continue as your patient. I shook his hand, thanked him and walked out. Yes, I did report him to the hospital. Now I’m moving on.