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Possible Sjogrens Disease

Autoimmune Diseases | Last Active: 10 hours ago | Replies (54)

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@mothermary1

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.

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Replies to "I need something. I’m so tired of being unwell. I have severe digestive motility and it’s..."

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.

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