Hello all, I was just recently diagnosed with Sjogrens and I am just so confused as to what is really happening to my body. I have been sick for about two years and nobody could really figure it out. I decided to visit the Cleveland Clinic in Ohio and that was the best choice for me. I am actually getting some answers and treatment.
I suffer iwth dry mouth, extreme fatigue, joint and muscle pain and neuropathy. I don't work right now because I am too tired and in too much pain most of the time. I was glad to find this website because it is nice to be able to share and learn from other fellow Sjogrens patients.
Sheila :)
Hi Sheila and welcome aboard.
I'm glad you got some answers about your condition and treatment usually helps alot. There is more info on here than any dr can give you! Well, just that we notice how much in common many of us have, even though we are all very different in the way the disease manifests itself. Lucy
Hi Shelia,
Welcome and please make your self at home.
There is a process of acceptance into this sjoggie journey. We all present many issues in varying degrees at different time intervals.
It is wonderful to have our own family of sjoggies, sharing the journey with compassions and encouragements for one another.
Join in and make yourself at home.
blessings kimbo
Hi Sheila,
Welcome to your new Sjoggie family. I am a former Buckeye myself (I live in Illinois now). ;D
We have quite a few members from Ohio. Some of which go to the Cleveland Clinic too.
There are several good books that explain about Sjogren's. There are some reviews on the page "Books/Reviews". The three I really like are: The Sjogren's Syndrome Survival Guide by Teri P. Rumphf, Ph.D. & Katherine Morland Hammitt; The New Sjogren's Syndrome Handbook put out by Sjogren's Syndrome Foundation; A Body Out of Balance by Ruth Fremes, M.A., and Nancy Carteron, M.D. FACR.
If there is a particular subject you are interested in, if you put those key words in the "Search" box to the top left it will bring up threads about it. If you don't find what you're looking for, you can always post and someone will usually come along and offer their input.
It is often a scary feeling when first being diagnosed trying to figure out what is happening with our bodies, isn't it? You're not alone - we're all on this Sjogren's journey too. Some have just been on the road longer than others.
You don't mention any dryness in your eyes - have you noticed any difference in your eyes? Most (but not all) have the eye, mouth dryness combo. We're all different and some have minor symptoms while others have more involvement. I'm happy to hear that you like your doctor at the Cleveland Clinic. I wouldn't be surprised if some of our OH members aren't seeing the same doctor(s)!!
There's lots of information on this site - I hope you find the site helpful to you.
Bucky
Hi Shelia,
Let me also welcome you to the SJS World and family! Please do look around as this is an amazing board, and let's not mention all the great members we have too (shhh, don't tell anyone as that's supposed to be a secret! ;) :D)!
I'm glad that you've been able to find a good doctor or dozen (I hear a lot of great things about the Cleveland Clinic - lucky you!), and I hope that you'll feel better soon.
Take care -
Patze
Hi Sheila :)
Welcome to Sjogren's world from me too. Most of us found it a shock to the system getting an SjS diagnoses but also a relief to find out what was wrong.
Feel free to ask questions, vent and contribute generally. I hope you find the site useful.
Take care - Scottie :)
Hi Sheila,
Welcome to Sjogrens World!
I'm so glad that you found us here but so sorry for the reason that you even had to look! Its nice to hear your positive response to the Cleveland Clinic.....I've heard so much good about that place here on the message boards, so it seems that you are in good hands!
Good luck in your continued treatment and I hope you are able to get some relief from your symptoms soon!
Welcome to the family!
Bucky
Hi, You asked if I had problems with dry eyes. I do have dry eyes but more problems with my dry mouth than dry eyes. I have so much fatigue and joint pain along with the neuropathy. I started on Imuran and IVIG infusion since my first visit to the Cleveland Clinic in October. They worked quickly because of the neuropathy. I actually spent 3 days in the hospital there so that they could do several tests. My lip biopsy was the last thing that they did and it was positive for Sjogren's. I haven't worked since March 2009 because of all of my symptoms. I also have a great deal of trouble with falling all the time. So I am just trying to get use to my body and my limitations. I can see it is going to take some getting use to.
I appreciate the information on the Sjogren's books. I will have to invest in some of those. I think I will like this site and hope to meet many new people and learn lots of information.
Thanks
Sheila
Hi Sheila -
I'm new here too. It's really great being here tho - reading all the wonderful things everybody here has written to help others.
I hope you connect with lots of people who can help you as you begin your journey with Sjogren's. I think support is really key. In all these years I've never met anyone else personally who has had Sjogren's. Nobody else who understands. Sounds like you've got doctors who care. I'm still looking for one that will take this seriously. <sigh>
Hang in there. :)
~Ellen S
Ellen
Hi, I have to agree with you that this has been a wonderful place. I have really learned a great deal of info in such a short time. I have to say that I have had my share of bad doctors. I hope that I am on the right track with them now.
Good luck with this and hope you learn from everyone else.
Sheila :)
Welcome Sheila, I h ave a sister with that pretty name. Everyone here is a family. Everyone is always wanting to help others, because we all understand the many things we go through that are so similar.
It's just so nice to have somewhere we can go when we need support, and have questions or comments.
susanep :)
Sheila,
Welcome from me too! I most certainly hope you find relief soon. We all can relate to the beginning stages of learning about this strange desease, the main thing is acceptance and learning your body's limitations. All of which you will do in time. Just be encouraged to know that it will become manageable at some point.
I look forward to getting to know you more as time go on.
Peace and Be Blessed!
Bernice