Hello....just found you

[teebee]

Hello, I just found your forum. I was diagnosed with Sjogrens in 1985 at age 21. At the time, I was experiencing frequent and painful parotid gland swelling and blockage and frequent kidney stones. Now that I keep myself hydrated those symptoms have lessened.

My biggest issues are joint pain, extreme fatigue, very dry eyes and mouth. Now that I am perimenopausal, things are getting...interesting. So, I figured it was time to start looking around for some support and help.

[engy]

Welcome teebee!

You will find a lot of support & advice on this forum. Glad you found us!

Are you taking any medicine or supplements to help with your symptoms?

[Joe S.]

While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.

With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.

[quilt4fun]

Welcome, teebee,
   There is a lot of info on this forum.  I have used the "search" block (upper right hand corner) several times to get more information on certain topics.
  Take care of yourself and come back and ask any questions.  I have found the people here to be a great support.

[teebee]

Thanks for the replies. I have several AI diagnosis as well: Graves Disease, RA overlap (primary sjogrens, tho), reynauds, urticardia... (+/- other diagnosis along the way and over the years)

I take synthroid, plaquenil, mobic, salagen, doxepin (for chronic hives/skin itching)

I learned very early that many folks with SS sucessfully use homeopathic methods to alleviate pain, deal with dryness, etc. For example, I've been using Johnson's Baby Shampoo as an eye makeup remover for

In the last few years, I have developed a sensitivity to what I think is benzoates. I cannot use most sunscreens and some lotions give me hives. I currently use cetaphyl cream for dry skin, but my hands and feet get so dry they crack....thinking I need to start using something stronger. Has anyone used straight vaseline?

I am also experiencing more vaginal dryness. Any suggestions?

Thanks.

[Dolly Dimples]

Hi TeeBee, and welcome,
        Sorry you had to join us, but glad you found a site that knows exactly how your feeling, and can give  you some tips and advice on most problems we have,
Do you take cod liver oil or flax seed oil, your local health can advise on oils to keep us more moist inside,  there are many lubricants at the pharmacies these days, and I'm sure you will get some tips on this personal problem which is common among us.  I use to use Vaseline for both these problems, but I do try the new ones as they come out. experiment,  cos there is no cure for our SS, but learning how to manage it is the way to go. Best of luck, Dolly x

[eye2dry]

Hi teebee.

welcome to this forum.

I like Aquaphor for dry cracked skin.....most drug stores, big dept stores carry it.

I like K-Y liquid beads for vaginal dryness. There is a company that makes some type of capsule that you put in the vigina that melts over time and lubricates the vagina and makes it way to the outside tissues. I can't think at the moment the name......

How about fish oil or flaxseed oil capsules...have you tried taking them?

nice to meet you here
take care.


eye2dry

[Meld256]

Welcome teebee! 

We're glad you found us, even though I'm sorry you're dealing with more recent issues.

Seems as though for many women, menopause can bring some worsening troubles. As if that's not enough! 
I was lucky that my symptoms didn't begin till then, but when they did...well, another story.

Many of us have several overlapping conditions, just as you.  It seems these things like to bring along their little unwelcome friends. 

As said, there are quite a few personal lubricating products out there. Might want to look around; websites like drugstore.com are great. For skin issues, some of us use good old olive oil.  It softens and is gentle and inexpensive.

I hope you find this forum as welcoming and helpful as many of us have.  We discuss anything and everything.  We look forward to hearing more from you.    Please feel free to post away!

Welcome again. 
Melinda

[Ark mom]

Welcome to the group!  I am a newbie around here as well, and so I am usually one posting lots of questions or problems, lol.  It is nice to meet you!

For female dryness, I use the Wal-Mart brand of personal lubricant, and use just a dollop occasionally externally throughout the day, occasionally using a syringe to lubricate internally if it is a bad day.  It is a lot cheaper this way rather than using the beads or specialty inserts. 

[artistangie]

Hi, I am a newbie too.

and i think the perimenopausal thing rings true for me too.  I look forward to getting to know you and the others her.
angie

[Pisces24]

I saw you mention Baby Shampoo so I thought I'd give you a tip my eye doctor gave me.
He has me put a little bit of baby shampoo on a very clean damp cloth. Then I use the damp cloth on my eyelashes, right where they end at but NOT in or on the eye itself.

My eyes are very dry and due to that the "gunk" gets in the eyelashes. builds up, and gets along the rim causing "froth", etc. The baby shampoo cleans this. You can also spend more money and get a product called Ocu-Wipes for that but this is cheaper.

Welcome to the group!

[Patze]

Hi teebee!

Let me also welcome you to the SJS World and family!  I'm sorry that we have to meet this way but I'm sure glad that you've found us!

I see that you've been given some good advice and there's not much that I can add.

Take care now -

Patze