Happy to meet others

[Lilith71]

Hello everyone!
I will tell you shortly about my journey and how I was diagnosed last Friday.3 weeks ago I was feeling so tired I couldn't get out of bed for 3 days. Since I work very long hours and have the bad habits of not eating regularly, not relaxing, not exercising  and not sleeping enough, I thought is was my regular fatigue. I had a very dry throat but my daughter had strep throat that week and I was sure I have the same. Later on, the test result was negative.  I started having a chest pain, felt like I can't breath. My boyfriend forced me to go to the ER and after the tests, they determined I had Pleurisy. I was prescribed a medication that seems to help but I was out of it in 5 days with no refills  and I need it to find a doctor. Since I didn't have a regular doctor I was forced to find one for a super short time. He listen very carefully to what I said. Here is the short version: I got divorced in 2010. It was a very stressful time for me since I emigrated to USA 15 years ago with my ex husband I he was my only family here. I lost my Mom from Breast Cancer when I was 25 and she was only 57 years old. I lost one of my sisters from Brain tumor when she was 46. I lost my nephew at the age of 4 from Leukemia . But nothing hit me as hard as my divorce. My daughter was 6 at the time. I was so scared how I will be able to support myself and her on my own when I don't have any family around me that my stress went over the roof. On top of that, I have my own business witch is a blessing and a curse at the same time because I am one woman operation and pretty much I don't have a day off. So my health started to deteriorate from that moment on. In 2009 I had a mini stroke but I keep going with the same speed. I use to sweat like crazy and I have been told that maybe is a pre menopause. I started going to the restroom way too often and I was told that maybe my bladder is too small. I started having cold feet and I was told to wear socks. I have been battling clinical depression since I was 13. The situation before, during and after the divorce was giving me tons of anxiety so when that was combined with my depression , the result was insomnia. I lost 40 lbs. in 3 months . Then I had Hypothyroid. Last year I started having regular pain in my heart and they diagnosed me with Pericarditis. I have chest pain almost every day, I just learned to ignore it. I always had problems with my stomach but in the last year it  was way too painful- I had pain after each meal. No matter what I was eating. I don't  even want to go grocery shopping anymore or have a desire to cook. I can't drink water because then  I cant stop going to the restroom.  The doctors found out that I had gallbladder stones, also diagnosed me with biliary dyskinesia. I had kidney stones as well.  My gastro wanted to do endoscopy but my Insurance situation was so bad I couldn't afford it. I will be doing that test on December 2nd. I also have been have  been dealing with a lot of vertigo. Just noticed that when I am under a lot of stress, it seems to increase. I had some blurry vision and went to see a doctor 3 months ago but he just gave me prescription for reading glasses with a very small strength-1.5. No dry eyes at all, no vaginal dryness either.
Very itchy hands and feet on times.After listening to all this and looking at all my test he told me he want to do a blood test for auto immune disease. I wasn't trilled but the more I was thinking, the more I was realizing that  maybe he is going into the right direction.
They called me on Friday and they told me that my test shows SS syndrome. I made them send me the results so I am writing them the way I see them on the letter :Ssa Autoab AU/ml 325
and on the site they add:" Analyte specific for Sjogren's" . They also send me 3 names of doctors in the are that they recommend and a short paper about the Syndrome. I didn't call the Rheumatologist  yet because I wanted to ask  someone from the forum who  lives in Naperville, Aurora area (Illinois) to recommend me a good doctor with whom they had a good experience .I was also sent last week to do an echocardiogram and they called me to inform me about the results today but I was working and missed their call so I will call them  back tomorrow to hear what they have to say. Today I also found out , that I lost 6lbs since last week and that is a miracle because lately I have been trying to diet but not very successfully. I also lost an inch in my height for the last year. Another strange thing- my feet keep getting smaller- In 2004 my shoe size was 9, until last month I was still size 7.5 and just last week  I found that my new size is 7 . Does anybody experience anything like this? My other question is - does anyone in my area knows about a supporting group that I can go?
It is obvious  that my insomnia hit me again- the time is  2.53am and I am still on the computer . 
I hope to hear from you !

Thank you for reading my post!

[Joe S.]

Welcome to the forum. Some of us have posted what we are taking in our signature.

Water-sip, swish, and swallow.

Good days, bad days - "Spoon Theory"

Some of us have trouble reading long posts with out white space and shorter paragraphs so you may get more responses if you can break up your posts. I believe this has to do with the dry eye pary of Sjogren's.

I take suplements as I have trouble with the typical medications.

[Lilith71]

Joe S,
Thank you for your reply!
My apologies for being inconsiderate about people's vision.
I am just scared and wanted to share my story.
I will appreciate any help I can get from people with the same problems!

[Joe S.]

I like most on the forum respond to PM's ( Personal Messages ).

There are a lot of people here to help you. There is a search bar in the upper  that will help you to explore on your own.

Some people will post question that others help answer.

I have come to believe that management of symptoms is key.

[SjoDry]

Lilith,

Welcome to the forum. So sorry that you found this site under your circumstances. It is the way that most of us arrive here.

You will find that there is lots of support and excellent info here.  Between the Sjogren's Syndrome Book by Dr.Daniel Wallace and this site, I have learned everything I know about Sjogren's!

Like most of us, you will find that the answers are not always clear cut & take awhile to sort out. For awhile I was hyper-focused on finding out which thing is causing which thing..but finally gave up on that. Autoimmune conditions are often a mix of various cross-over symptomology.

The bottom line is that all that any of us can do is to treat the symptoms & hopefully get some relief. It sounds like you have had more than your fair share of medical problems. So sorry for you.

You are on the right track in working to establish a doctor who is well versed in Sjogren's. Finding a good Sjogren's doc can be a real challenge. But it is worth the search to find a great doc.

Though autoimmune problems are completely unpredictable and totally out of our control, it helps to learn all that you can. This is a wonderfully supportive group of folks! We are all here to help eachother in this unhealthy journey. Feel free to ask questions or vent, etc.

Hope you get some relief soon!
SjoDry

[Lilith71]

Hello SjoDry!
I have a huge problem finding a doctor. I guess that would be my challenge!
The doctors either don't accept my insurance, or they are booked until February. Some of them are having so many patients that even if I book the appointment  they don't guarantee it until I represent all of my test results and wait for them to decide if they are going to take my case or not. So I guess I am just venting

[SjoDry]

Lilith71,

I checked the Sjogren's Syndrome Foundation site to see if there is a support group in your area. I found a group in the Chicago area. I run a support group in Pittsburgh. I always get calls for doctors in our area. If you contact the lady listed below, she may be able to direct you to a good doc in your area.

Here is her info:
Chicago Area
Support Group Leader:
Heidi Shierry
Contact Information:
(630) 853-6836

Hope this helps!!
SjoDry

[Lilith71]

That would be a huge help! Thank you!

BTW, do you guys have the problem of sharing your diagnose with friends and family and get the response that you are...crazy?

[Carolina]

Lillith, your observation is one many of us have made....other folks just don't 'get it'.

People want a disease with a familiar name that has a cure and will be gone soon!

Our conditions are complex and baffling, even to many of the very doctors we rely upon.

So, best not to try too hard,  Talk to us, we understand as much as anyone ever will.....

Hugs, and welcome,  Elaine

[Lilith71]

Elaine,
It's funny, because right after I read your email I went to work and talked with client of mine - she shared about having OUR syndrome and was telling me that she is not telling anyone because all her family and friends thinks she is crazy. I did allow her to talk all she wants-we found out to have so many similar symptoms, it was nice knowing somebody gets me:)
And that I am not crazy

[Pisces24]

There are a lot of doctors totally unfamiliar with Sjogrens. They are starting to learn though. I tell whatever medical professional I have contact with about it to educate them. Even had to educate my dentist!

I am out on FMLA presently (off work w/pay here for awhile) with a problem even the specialists can't figure out and call it idio-pathic.  I suddenly developed a lung breathing issue that they think Sjogrens has a part of but not sure the cause.

Sjogrens is a syndrome. Meaning it can affect many other "parts" in the body.  A disease is localized or id'd to the point the drs know and can treat it directly.  With Sjogrens, they basically have to find out what it ISN"T to find out what it IS - causing the problem.

Welcome and good luck!