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. :)
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
Quote from: Bucky on January 15, 2013, 09:11:38 AM
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! :)
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
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
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.
Quote from: Dolly Dimples on January 15, 2013, 09:45:18 AM
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.
Quote from: CMNK12 on January 15, 2013, 11:08:52 AM
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.
Quote from: Jellyb on January 15, 2013, 11:10:05 AM
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!
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.
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
Quote from: Joe S. on January 15, 2013, 01:34:25 PM
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!
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
Quote from: grammad97 on January 15, 2013, 02:13:34 PM
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!
Quote from: McKorky on January 15, 2013, 02:50:33 PM
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! :)
Hi Mindy :)
Welcome to Sjogren's world. The youngest person ever mentioned in this forum was 4 years old and we had an eight year old who used to participate, so its a bit that doctors want to restrict diagnoses to middle age.
I hope you find the site useful. You will certainly find its friendly and supportive.
Take care - Scottie :)
Howdy mindytyson3, glad you found us.
Seeker
Mindy you will be so glad you found this site!!
Thank you all! :)
Mindy,
My first visit? Hmm...From what I can remember, a paper gown so he could look at all my joints, I had my range of motion checked, all my joints checked, a detailed history taken, and lots of blood drawn. I knew him already so it wasn't so strange. I worked in a hospital so I saw him there.
Keep a journal of your symptoms...it will help you keep it straight. how long do they last? What makes it better? Do you have joint swelling/redness? Do your legs swell? Do you or have you had any rashes/ where? Do they itch? Are they related to sun exposure? If you get a rash..take a picture of it because sometimes we can't get to the docter before it goes away. Just some thoughts. Do you have cold hands and feet that change color?
Good luck with your appt and let us know.
Oh... I take meds you don't want to take yet. Currently on cellcept and high dose prednisone. Don't let that scare you. You will probably never need those :) and I am hoping to not need them in the future. I started out with Imuran with my diagnosis but it was complicated...had alot going on. I think standard treatment is plaquenil these days but I am not a doc . CK
Quote from: CMNK12 on January 16, 2013, 05:49:42 AM
Mindy,
My first visit? Hmm...From what I can remember, a paper gown so he could look at all my joints, I had my range of motion checked, all my joints checked, a detailed history taken, and lots of blood drawn. I knew him already so it wasn't so strange. I worked in a hospital so I saw him there.
Keep a journal of your symptoms...it will help you keep it straight. how long do they last? What makes it better? Do you have joint swelling/redness? Do your legs swell? Do you or have you had any rashes/ where? Do they itch? Are they related to sun exposure? If you get a rash..take a picture of it because sometimes we can't get to the docter before it goes away. Just some thoughts. Do you have cold hands and feet that change color?
Good luck with your appt and let us know.
Oh... I take meds you don't want to take yet. Currently on cellcept and high dose prednisone. Don't let that scare you. You will probably never need those :) and I am hoping to not need them in the future. I started out with Imuran with my diagnosis but it was complicated...had alot going on. I think standard treatment is plaquenil these days but I am not a doc . CK
Ok thank you so much for your help! Why do I need to say no when my doctor does the tender test? I have read on here somewhere people said to tell them no that it don't hurt. Why? Thanks.
They are probably referring to the 16 point test for fibromyalgia. The doc will check a series of areas to see if they are "tender" .. these are classically tender in fibro patients. Tell the truth. These areas have not been tender for me. google it. CK
Quote from: CMNK12 on January 16, 2013, 06:21:34 AM
They are probably referring to the 16 point test for fibromyalgia. The doc will check a series of areas to see if they are "tender" .. these are classically tender in fibro patients. Tell the truth. These areas have not been tender for me. google it. CK
Ok thanks so much!
Quote from: mindytyson3 on January 15, 2013, 02:58:58 PM
Quote from: McKorky on January 15, 2013, 02:50:33 PM
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! :)
I was misdiagnosed for 7 years, having joint and muscle pain nonstop. when I started having pain in my lower back, they did blood work to see if it was lupus, but found out I had sjogrens instead.
I was to the point where doctors were thinking it was all in my head.
Hi Mindy, I've been on this site a short time, and have gotten such great support. Welcome!
I was diagnosed in May of last year after having finally a positive ANA and ssb during a 27 pound weight loss flare and blepharitis. Feel blessed to have a positive dx as so many do not. Had been tested on and off for about 4 years prior. Good luck and God Bless!
Quote from: McKorky on January 20, 2013, 02:30:07 PM
Quote from: mindytyson3 on January 15, 2013, 02:58:58 PM
Quote from: McKorky on January 15, 2013, 02:50:33 PM
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! :)
I was misdiagnosed for 7 years, having joint and muscle pain nonstop. when I started having pain in my lower back, they did blood work to see if it was lupus, but found out I had sjogrens instead.
I was to the point where doctors were thinking it was all in my head.
Well I am glad they figured it out for ya. :)
Quote from: MaryBee7 on January 20, 2013, 03:45:43 PM
Hi Mindy, I've been on this site a short time, and have gotten such great support. Welcome!
I was diagnosed in May of last year after having finally a positive ANA and ssb during a 27 pound weight loss flare and blepharitis. Feel blessed to have a positive dx as so many do not. Had been tested on and off for about 4 years prior. Good luck and God Bless!
I have gotten great support as well! Everyone has been really great and has gave me answers to all my questions I have posted! Thanks Everyone! :) Gosh! Good luck and God Bless to you too!