Newbie here, and I need advice/suggestions. :)

[CAT1962]

Hi, I was DX yesterday with Sjogren's. My lab work says Sjogren's SSB...not sure what this means. I have occasional dry mouth and eyes, with horribly dry skin. The dry mouth and eyes are a "sudden" thing. Like all of a sudden I have dryer lint in there...lol... then, as much saliva as I need. Sounds weird, I guess. My rheumatologist did  a lot of blood work, x-rays, etc. I have achy joints, and he said that may be due to my chronic fatigue. My vitamin D was very low so he RXd 50,000 to me. Haven't taken it yet. He wants me to take Flexeril at night. My hair has been steadily thinning on top for the last few yrs. He said that hair thinning is a rare symptom of Sjogren's, so it may be that, may be heredity, he didn't really know. (I have an older half sister that is estranged from the family with the same type of hair loss.). He also pointed me to a clinic here in the city. They do full DX, biopsy, etc. I don't want to go through all of that testing! (Putting tissue paper under my eyelids?? I don't wear contacts because the thought of ANYTHING coming close to my eye scares me. My questions (sorry....just so confused here...) are What can I do homeopathically for this, if anything? Any herbs, vitamins suggested?? I work with children with disabilities, have 4 of my own. I am on O2 at night for mild sleep apnea and (i think the doctor called it hypopnea) and don't want to drug myself into a stupor. Thanks so much for any insight...

CAT

[Joe S.]

Welcome to the forum. I have posted some of the alternative supplements that I use in my signature. I have not been able to take the typical med for this illness. Before taking any new medication, do some research on the web. Find out what its interactions are and what side effects you might expect. Talk to you doctor about what you are taking or thinking about taking.

When you go see your doctor, bring an advocate with you. It helps to have a list of symptoms to bring with you. Our brain fog makes it difficult for us to advocate our case and remember our symptoms. We can easily be distracted from what we need to get across to our doctors.

If you have specific questions please PM me.

[Patze]

Hi Cat1962,

Let me also welcome you to the SJS World and family!  Please do look around the board as you'll find a ton of topics and scads of information that just maybe what you're looking for.  You can find it by using the search engine in the upper left hand side of this page.

I know there are some members here that are using homeopathic methods, and hopefully they'll stop by soon and give you some advice.

Again, welcome and I sure hope that you feel better soon!

Take care of yourself -

Patze

[Pisces24]

You mentoned about putting tissue paper in your eyelids???

I had the Schirmer's test for my eyes to see how dry they were and it was reall easy and not bad at all
The drhas a special piece of thin small strip of ph paper. He bends an end and the bent part goes on you under eyelid - between the eye and the lid.  It is maybe a little scratchy but not a bad test at all. It is pretty simple.

I scored a 1 and a 0 so I got one eye working harder than the other one. 

[charla]

I take no medications at all except the occasional ibuprofen or Tylenol. I eat a cup of yogurt, flaxseed oil, honey, and pineapple (mixed together) every morning and evening. I take magnesium along with vitamins D, C, and a few others. I swish olive oil around in my mouth to combat dryness right before I go to bed and do a saline sinus rinse in the morning because I have dry sinuses. I am the lotion queen and am always looking for the best available ones. I have a bottle on me every minute of the day because my skin is so dry. I am tested often for kidney, liver, etc. functioning just to make sure that the disorder is not affecting them in any damaging way. If that starts to happen then I will probably give the ok for medications. Right now, I simply exercise, avoid grain products, drink lots of water, and rest as much as possible and I feel relatively better than before I incorporated these tactics. I still have bad days (sometimes weeks) and the worst part is the fear that I might not have another good day. I am never free of pain or irritations but I got used to it and now it is just a part of my life. My good times are when the aches and pains are at a minimum, allowing me to function and enjoy my life. My bad times are when I am literally exhausted, dried up, and hurting. I do go to a homeopathic doctor that works with my regular doctors, which I highly suggest, instead of trying different things on your own without professional consultation.