Wednesday, March 16, 2011

Sjogren's Syndrome Is Not For Everybody

Sjogren's syndrome Is a Nutty disease, If you have it Like me, You know that It's like the motherload of Autoimmune Diseases! 


Anyway, I've wanted to do a Post about it because I feel like no one knows that much about it.
I've been reading a lot on it since My Doctor diagnosed me with it. So I've learned, read and copied some of these things.


And MAKE sure You go to a rheumatologist then a ophthalmologist if you think you have it.
And that They Know what Sjogren's syndrome is! Most of them do And Make sure To ask the office When You call! I do that a Lot and If They are rude or Say in a Rude way, what is that?? Just ask for someone else OR Hang up... I'm sure, The Office Is rude also! But make sure to get Help.

So I wanted to go over the symptoms and signs of Sjogren's syndrome.
There are a LOT! 
You can get Red, burning, itching, and/or dry eyes, it kinda' Feels gritty, like there's sand in them.
A sticky feeling in Your eyes after sleep, you have a few tears and can't cry. A kind of oily feeling at the corner of your eyes, light sensitivity and a filmy sensation (like the sticky feeling^). Mucus and debris stuck on the eye surface as seen By biomicroscopy.
Dry mouth- your mouth might feel like it's full of cotton, making it hard to swallow or speak.
And chewing or swallowing, may hurt. Hoarseness, tender gums, a dry sticky feeling in the mouth, sometimes excessive thirst, dry skin or skin rashes, nose, throat, and/or lungs, having Problems Breathing, like it's too dry.
Loss of taste and smell, sometimes food will taste Nasty But it's not. It might be your taste buds.
A sore or cracked tongue. Or meaty Looking Or really red. and the tongue hurts. Believe me You will know, it hurts a Lot! 
And You can get severe dental cavities caused by dry mouth, I never used to have ANY! Now I have 10 cavities.
Dry or peeling lips.. Like Your lips get when You get a fever. 
Swollen salivary glands (The things under Your chin).
Joint and muscle pain.(like aches) Like what I already have.
Fatigue. (Tiredness)
Having Chronic anemia a lot, is a symptom also, Unless You have it all The time. Then it May be just you, so talk to Your Dr! :) 
Arthritis and Muscle Pain comes with it also.
Frequent infections like Bronchitis or sinusitis is a symptom. And sometimes blood vessels get swollen along with it. The nervous system,organs such as the lungs, liver, pancreas, kidneys, and thyroid. They can fail.


For the GIRLS! 
Oral yeast infections & Vaginal dryness, also. :'p




Now onto the Tests.
Blood tests-including rheumatoid factor,what is the RF? This antibody test is indicative of a most often performed for the diagnosis of rheumatoid arthritis (RA)  but is positive in many rheumatic diseases AND In Sjögren’s patients and other tests used to detect and monitor autoimmune diseases. Sometimes, Your Blood will be Normal BUT you will still have Sjogren's syndrome.
Chest x-ray —a test that uses radiation to take a picture of structures inside the body, in this case the lungs
Lip biopsy —removal of a sample of lip tissue to look for inflammation in the accessory salivary glands located there
Schirmer test—placement of small pieces of paper between the lower eyelid and eyeball to see how much moisture is being produced
Slit-lamp examination—a detailed exam of the eye with an adjustable light
Urine test—to check kidney function.
These's tests are What Most Doctor's Normally do, But There are Always New tests coming up.


Here's some Stuff that Helps it, sometimes, since there are some medicines for it now. But they don't help a lot, but the medicines for Just for the dry Mouth and dry eyes, help a LOT!
For dry Mouth, I LOVE Biotene!! I use Biotene BUT there are other ones called Evoxac® (cevimeline), Salagen® (pilocarpine hydrochloride) and Numoisyn™ And for dry eyes there is Restasis® (cyclosporine ophthalmic emulsion) and Lacrisert® (hydroxypropyl cellulose ophthalmic insert) But I love and use "Advanced Eye Relief Redness Maximum Relief" from Bausch & Lomb. The link to see it is  http://bit.ly/fcj76E  All Of their stuff Is good, anything for Dry or Redness helps me but remember if it doesn't Help, keep Looking or Ask your Doctor.
The only is I just wish, that Someone would Make some Dry eye Drops for Sjogren's syndrome.  


To relieve joint and muscle pain.
Sometimes, Aspirin,  Advil, and Aleve help also! But if It's Really BAD, Like I'm crying my head off Bad, JUST go ask your Dr for something. Really....


To relieve inflammation / swelling
Plaquenil —antimalarial drug with anti-inflammatory properties (need prescription!)
Steroids- Shots and IVs sometimes. (need prescription!) 
Methotrexate —a steroid-sparing agent. (need prescription!) 


Sometimes Changing your Life can help! More like habits...
*Mild exercise can help relieve stiffness in the joints. Even if you go to the store and walk around a little bit helps. Believe me. 
*To help relieve dry mouth, sip liquids often and suck on sugar-free candies.
*Brush, floss, and see your dentist regularly. This can help to prevent cavities.(Don't forget to tell them what meds you are on!)
*Use nonscented moisturizers to help relieve dry skin.


~Sometimes, SUPER RARE!! However, people with severe cases are at increased risk for developing lymphoma. This is a cancer of the white blood cells. Your doctor will need to monitor you for this and will watch it for you! 

And Make sure You Look at The Sjögren’s Syndrome Foundation website! http://bit.ly/gZ9wyC


Yes, This Post is More for the People who have Pain and are Looking for info as to why they got those symptoms (go get checked) or If they are recently diagnosed. Yes, this post is not just about me But for the 4 MILLION People who have Sjogren's syndrome!! And I want you to Know what is and tt's so painful and Hurts to have this unknown Disease.
And I have this Disease, If I ever have Kids or Grandkids, They May Have it and I want them to Have Medicines and Maybe Who Knows a Cure?? That's Why I'm a DREAMER! I dream of a CURE!! for all DISEASES! and No pain..!! if it's God's Will, It will happen! 


I have to go to Now I'm so Sleepy!! Good Night! and God BLESS! 
XOXO <3 Pray for Japan! 
Pamela 

2 comments:

  1. Sounds crazy! But will ask my RA about it. Right now I'm being treated for Lupus. and so many of the symptoms can be other ickies in my life. i.e. diabetes, chronic pain (bad accident in 2003 left me disabled) now, lupus? I'm pooped! I need to do some more investigating because this is sounding a little too familiar!

    Thank you so very much!
    KYIMP!

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  2. wow! scary stuff! I was diagnosed with lupus last year. So many of the symptoms sound like lupus and some don't. I need to monitor this a little closer as I have the dry mouth and the eye ickies. Then again high blood sugar does that too! Yup, diabetic and disabled (chronic pain from disability, accident 2003) I'm a muddled and befuddled mess too! Need to talk to RA about this one!
    Thank You so very much!
    KYIMP!

    ReplyDelete

Thank You Commenting! & I always read them.
Xx Pam