New Member :)

[vacumme83]

Hi! I am a new member to this site. I have been struggling with the symptoms of Sjogrens for over a decade, but only recently went to a doctor when the joint pain and fatigue became unbearable. The diagnosis was found quickly once I visited a rheumatologist, but it was kind of a fluke. Earlier this year I saw a neurologist for severe migraines and was tested for several auto-immune diseases. Sjogrens appeared but the neurologist wasn't concerned. After some research on it I realized that it explained so many of my symptoms. When seeing the rheumatologist I explained the situation earlier in the year and she immediately had me retested for SS and some others. One week later I had my diagnosis. While a part of me is...not scared, but worried about the rest of my life with SS, mostly what I am feeling is relief that this is not in my head and that I am going to get relief for some of these symptoms.

I have primary SS, but also tested positive for something called HLA-B27. I don't really understand that test result at this time. She explained it to me a bit, but I was distracted by the SS diagnosis. Does anyone else have this HLA-B27 thing?

Anyway...hello to all. I am so happy to be here!

[Joe S.]

Welcome vacumme83. It was nice to see you posting. Some of us have posted what we are taking in our signature. I recommend that you check out "Spoon Theory" to understand the good and bad days of an autoimmune disease. Sleep with your polar fleece mumps scarf to keep the infections down. Sip, Swish, and swallow is my water mantra. Breath through any pain.

I have a simple meditation that I use instead of sleep that helps with other issues. Find a comfortable position and close your eyes. with your eyes closed look to the top of your head while doing the rest of the meditation. Breath in and think "I am", Breath out and think "calm", repeat. You have it down when you can do it for 15 minutes. If your mind wanders, that is okay, just restart your meditation.

[Meld256]

Hi vacumme83,

Welcome to the forum!   

I think you'll find this a place of friendly, helpful people and lots of information.  Just type anything into the "search" box and you'll find loads of discussions about almost anything.

Your story sounds familiar with us; so many have had health problems that were finally all linked once we had a diagnosis. It all makes sense!  No, it's not all in our heads! 

I'm not a medical pro. but what I know about HLA-B27 is that it's a gene marker in our blood tests that can possibly point to other arthritic conditions. If yours shows positive it means that you may a chance of having some of those, too, which is not uncommon at all with Sjogren's.  Many of us have other similar things that seem to like to "band together" in a happy little group.  It may explain some of your symptoms, but as far as I know it's not a separate disease by having a positive HLA-B27. Someone else may have better information than I.

I understand your relief knowing what you're dealing with now, and treatment can really start you feeling better.  Have you been prescribed any meds or lifestyle changes?

We're glad you found us, too!  Feel free to ask anything at all, comment and post away.  We'll be with you on your journey to learning.
Melinda

[vacumme83]

Thanks for all your replies!

Melinda: I am currently on prednisone and hydrocloriquin. I am hoping that the second helps with the fatigue as I read it did for some on another thread. Thanks for the info on HLA-B27. That totally makes sense and makes her desire to do bloodwork often to recheck for other autoimmune diseases make more sense too. As far as lifestyle changes, my dr mentioned that a vegetarian or vegan diet can help some, but I have already been a vegetarian for about 21 years so I am making no changes there. She has me doing stretches and light exercise for related bursitis and wants an MRI of my hips since this is my biggest trouble area. She thinks there may be a "mechanical" issue there are well. Ugh. But over all it is a relief to have the explanation of why I feel like this all the time!

Joe: Your meditation sounds very Buddhist. I currently meditate while doing things, like the dishes. I have issues with fatigue and sitting still for too long (I tend to fall asleep!). I decided that working and walking matras on my good days work very well and are so very calming! The "I am" is a very good one as well.

[Bucky]

Hi vacumme83 - welcome to the forum.   

As mentioned, there is a wealth of information found here concerning Sjogren's.

Sjogren's is an individual disease - which means no two people present the same exact way.  Treatment that might work for one, may not work for the other.

Have you had your thyroid tested?  When your thyroid is out of whack, it can make you extremely fatigued.  They have to keep a watch on mine and it goes up and down like a roller coaster.   

Do you have the dryness of the mouth and eyes?  Some times dryness becomes so normal to us, we don't realize how dry we are.

It might be helpful to you to start from here on out to keep a personal health folder on yourself.  Get copies of your labs.  Keep a little journal or something when a new symptom pops up - how long it lasted, what kind of symptoms you had, if anything helped it, when it went away, etc.  I know for myself, at the time I think I'll remember those things - but a day turns into a week, into a month and then I can't remember when it started, etc.

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

Bucky

[vacumme83]

It's funny you said that Bucky because as soon as I got my dx I started a journal for symptoms and side effects of medications. 

My thyroid was tested and is normal.

[GeorgiaGirl]

Welcome!  I hope you find lots of good information and lots of support here.

[Patze]

Hi vacumme83,

Let me also welcome you to the SJS World and family! 

I'm sorry that we had to meet this way but I'm sure glad that you found us!

I also hope that you find the board as informative and welcoming as I did all those years ago.

Take care of yourself -

Patze

[Carolina]

 For example, while 90% of people with ankylosing spondylitis (AS) are HLA-B27 positive, only a fraction of people with HLA-B27 ever develop AS.

http://en.wikipedia.org/wiki/HLA-B27

Hope this helps.

Hugs

Elaine

[smallfry]

Hi Vacumme83

Just wanted to welcome you to our world,

Take Care
Cheryl