Hello everyone! I'm new to all this. I've had symptoms of Sjogren's & Fibromyalgia for awhile now and was finally diagnosed a couple months ago. Didn't know much about either. I am somewhat relieved that I was diagnosed so that I can better understand a healthier lifestyle & wanting to learn how to stretch my energy to last the day. I am a single mother of 3children ages 13,10 & 4. I love them dearly! :) I have been feeling alone & scared with a lot of questions. I'm so blessed to have found this website to connect with others who understand & gain friendships. This is so my 1st post...not 100% how all this works so hopefully I'm doing it right. May God bless u all on this journey & may He give us the strength & courage to spur on & be an inspiration to one another. :)
Welcome Philippians4:13,
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.
Hi Philippians 4:13,
Welcome to the forum! This is a great place to meet others and share our lives with SJS. Using the "search" box at the top of the page is a great way to find information on a particular word, such as "plaquenil."
Take one day at a time,pace yourself and enjoy those kids! My prayers go out to all the fellow Sjoggies.
Quilt4fun
Welcome, phil:
Wow, you have lots on your plate.
Please know that everyone here is welcoming, many are very knowledgeable, and this is the place to gain support and wisdom, in every aspect of life.
No question is asked too often, no 'whine' is 'whined' too often, no worry is too small or too big........
Spelling and grammar are NOT important.
It helps to type short sentences, and very brief paragraphs.
It helps if you put your key info in your signature line (diagnosis, medications, over the counter items, etc) whatever you think someone might like to know each time they read one of your posts.
You can search the forums for topics, like pain or Plaquenil or fatigue, or any other topic.
Welcome
Keep us posted
Hugs
Elaine
Welcome! I'm so sorry you have this. Just a tip as far as fatigue. I've heard nothing but good things about L-Carnatine.
Hi Phil :)
Welcome to Sjogren's world. There is life after sjogren's but you gotta pace yourself - and I know that's not easy with kids. I have 4 - well all adult now - grown and flown - but life when they were younger was sometimes tough. Luckily the older ones helped out with the younger ones quite a bit.
Remember that SjS is a very individual disease and that not everyone develops every aspect of it. sometimes when you are new here - reading this forum can be a bit scary!
You are right though - it's a very supportive place to be. I hope you find it useful.
Take care - Scottie :)
Hi Philippians4:13,
Let me also welcome you to the SJS World and family! Please do look around the board as you'll find scads of topics and threads that you just might find interesting. You'll find them by using the search engine located in the upper right hand side of this page. If you don't find what you're looking for, don't be shy and ask away as there is usually someone about that might be able to help.
I hope that you find this board as warm and welcoming as I have all these years.
Take care of yourself and don't forget to breath -
Patze
Hi Philippians 4:13,
I apologize that I'm late, but allow me to say "Welcome!" ;)
I also have a Fibromyalgia and Sjogren's diagnosis, so I can probably relate to some things you're experiencing. Just one of those things would be enough, right?
Most of us arrive here feeling rather alone and afraid, or at least I know I was. This is a group of understanding, helpful and encouraging people who've meant so much to me. There is loads of information here of all kinds, so search away.
Also, feel free to ask anything at all, voice concerns and worries, and we'll be happy to try to help. It's a journey we tread with the diagnosis, and it's good to have someone to go along. ;)
We look forward to hearing more from you. Please post away!
Again, welcome.
Melinda
Hi Philippians 4:13, I'm new too... this is a great place to read and share about our experiences with SJS and it's related conditions. I am glad that I found this community as I am sure you are too.
Hope you are well and we'll see ya around on here! :D