hello i am new to this forum

[mindytyson3]

hello i am new to this forum. i got diagnosed with sjogrens syndrome just yesterday. i have done my research and know alot about it even the person that came up with this syndrome..ha. i am only 30 years of age and been having problems with dry eyes and mainly joint pains a lot. i finally got a doctor to actually run test and help me figure out what was wrong with me! i have had a doctor before my recent one just look at me like you are too young to be having all these problems and all he did was give me anti inflammatories which did not help at all. my recent doctor told me that when he did my blood work for ana it came up positive and he was suppose to do further testings since it was positive and he did not so that tells me he just didn't care! so my recent doctor figured it out and now i can deal with what i have at my young age.

[Bucky]

Hi Mindy - welcome!

It's good that you've done some research on Sjogren's - as I feel knowledge is power. 

There's a wealth of information here on this site from links you can check out, to actual experiences from fellow Sjogren's patients.  We also have a live chat on various nights throughout the week.

We have several members in your age range.  It seems that Sjogren's has no preference of gender or age.     The vast majority of our members are female, but we also have male members too.  We're a group from literally around the world from all ages and all walks of life.

If there is a specific topic(s) you are interested in, if you put that word(s) in the search box to the top right of this page, it will take you to previous threads about that topic.

Again, welcome . . I hope you find this site helpful to you on your Sjogren's journey.

Bucky

[mindytyson3]

Hi Mindy - welcome!

It's good that you've done some research on Sjogren's - as I feel knowledge is power. 

There's a wealth of information here on this site from links you can check out, to actual experiences from fellow Sjogren's patients.  We also have a live chat on various nights throughout the week.

We have several members in your age range.  It seems that Sjogren's has no preference of gender or age.     The vast majority of our members are female, but we also have male members too.  We're a group from literally around the world from all ages and all walks of life.

If there is a specific topic(s) you are interested in, if you put that word(s) in the search box to the top right of this page, it will take you to previous threads about that topic.

Again, welcome . . I hope you find this site helpful to you on your Sjogren's journey.

Bucky

Thank you so much! It is nice to meet everyone on here! 

[Dolly Dimples]

Welcome Mindy, sorry you had to find us tho'
    You might think you know a lot about SS , but hey I am still learning and I have been here for years-----

      It is such an indidious complaint, and what it cant throw at  you is not worth having ,
but at  least we are generally a cheery lot, very compassionate and always here for you,

    Tho' sometimes we are very miserable too,,
                    Hope you find the site helpful, Dolly
   

[CMNK12]

   Welcome Mindy.
  Knowledge is power ..never forget that, and never stop being your own advocate. You know your body better than anyone. I was 36 when I first started having bigger symptoms and got diagnosed 5 years ago. I am 43 now. This is an amazing group of people and I have learned alot here.
  Again welcome, sorry you have sjogrens,but we are here for you.    CK

[Jellyb]

Hi Mindy!
Welcome!
This site has been a god send to me. Everyone here is so kind and helpful. I have learned so much from  them. It seems almost everyday there is something new to know, from medications and supplements to lip balms and lotions. Ask any question and there is always someone with a kind word and helpful ideas.

[mindytyson3]

Welcome Mindy, sorry you had to find us tho'
    You might think you know a lot about SS , but hey I am still learning and I have been here for years-----

      It is such an indidious complaint, and what it cant throw at  you is not worth having ,
but at  least we are generally a cheery lot, very compassionate and always here for you,

    Tho' sometimes we are very miserable too,,
                    Hope you find the site helpful, Dolly

Thanks yeah I am sure it will take me years to get to know a lot more about SS..ha.

[mindytyson3]

   Welcome Mindy.
  Knowledge is power ..never forget that, and never stop being your own advocate. You know your body better than anyone. I was 36 when I first started having bigger symptoms and got diagnosed 5 years ago. I am 43 now. This is an amazing group of people and I have learned alot here.
  Again welcome, sorry you have sjogrens,but we are here for you.    CK

Thanks so much! Do you remember your first visit to a Rheumatologist? What did they do like testing I mean? Also what are you taking for this? Thanks.

[mindytyson3]

Hi Mindy!
Welcome!
This site has been a god send to me. Everyone here is so kind and helpful. I have learned so much from  them. It seems almost everyday there is something new to know, from medications and supplements to lip balms and lotions. Ask any question and there is always someone with a kind word and helpful ideas.

Thank you very much!

[Joe S.]

Sjogrens Welcome

While I am glad that you found us, I do not like it that 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.

Sjogrens: 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. Do not 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 Sjogrens 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 Ss of Sjogrens.

[grammad97]

Hello Mindy and welcome.
I am happy you have researched sjogrens and also you have a diagnosis so the doc can treat your symptoms.
Each of us have various complaints within the group. Some of us are young and some of us are older. I went for almost 10 years without a diagnosis.  I sm happy to see more doctors are more knowledgeable about autoimmune disorders now.
Keep a journal/diary of symptoms for your doctor. It helps give a clear picture of what is going on with you and what symptoms need to be addressed.  Everything matters when the doc needs to "connect the dots" for a treatment plan.
My main symptoms were joint pain ; stiffness ; insomnia; and nausea and mouth issues. My eyes became dry a few years later.
I now am on plaquenil(200 Mg 2x day); restasis ;pilocarpine for a mouth swish; carisporodal for sleep ; and vitamin D; omega 3; hair/skin/nail vitamin.
I was given a pain patch for my pain that I change once a week.
They tried a multitude of RX on me and many things had horrible side effects. Each of us handles meds differently. Wyatt works for one may not work for someone else.
As it was said previously you are your best advocate.
We are here for support; friendship and information sharing.
Nice to meet you.
Deb

[mindytyson3]

Sjogrens Welcome

While I am glad that you found us, I do not like it that 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.

Sjogrens: 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. Do not 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 Sjogrens 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 Ss of Sjogrens.

Thanks so much for the info!

[McKorky]

Hello Mindy!
Welcome to the forum. So glad that you have a diagnosis!
Also glad that you have been doing research on this disease.

I was diagnosed when I was 19 and im now 20.

If you have any questions ask away on here!!

Cori

[mindytyson3]

Hello Mindy and welcome.
I am happy you have researched sjogrens and also you have a diagnosis so the doc can treat your symptoms.
Each of us have various complaints within the group. Some of us are young and some of us are older. I went for almost 10 years without a diagnosis.  I sm happy to see more doctors are more knowledgeable about autoimmune disorders now.
Keep a journal/diary of symptoms for your doctor. It helps give a clear picture of what is going on with you and what symptoms need to be addressed.  Everything matters when the doc needs to "connect the dots" for a treatment plan.
My main symptoms were joint pain ; stiffness ; insomnia; and nausea and mouth issues. My eyes became dry a few years later.
I now am on plaquenil(200 Mg 2x day); restasis ;pilocarpine for a mouth swish; carisporodal for sleep ; and vitamin D; omega 3; hair/skin/nail vitamin.
I was given a pain patch for my pain that I change once a week.
They tried a multitude of RX on me and many things had horrible side effects. Each of us handles meds differently. Wyatt works for one may not work for someone else.
As it was said previously you are your best advocate.
We are here for support; friendship and information sharing.
Nice to meet you.
Deb

I am definitely keeping a journal. I started it on the 8th of this month! Thanks for your advice and info. Nice to meet you too! And thanks again!

[mindytyson3]

Hello Mindy!
Welcome to the forum. So glad that you have a diagnosis!
Also glad that you have been doing research on this disease.

I was diagnosed when I was 19 and im now 20.

If you have any questions ask away on here!!

Cori

Nice to meet you and thank you! I am glad I was diagnosed too! I was tired of hurting and not knowing what was wrong with me when I knew something was wrong!