Diagnosed August 1st and don't know anyone else with this syndrome.

[Kathy57]

Hello to all others.  I was just diagnosed on August 1st by a Rheumatologist.  This after going to multiple Dr.'s who didn't have a clue as to what was going on and maybe thought I was just "menopausal" or just a little crazy.  Very frustrating past two years, but something tells me that I am "preaching to the choir."  I do not know a single soul who has this syndrome so I was excited to join this forum and give some support and get some.  My symptoms are very dry mouth, frequent oral thrush (treated now), dry eyes, fatigue, anorexia, stomache upset, weight loss, frequent dry cough, terrible sinus dryness after recent failed sinus surgery.  (Ended up with three nasa septal perforations that cannot be repaired.)  The good news is my nose looks "okay" on the outside but not too good on the inside.  I was working nights as a nurse (have worked almost full time for 37 yrs) but had to quit because of the weakness and fatigue.  Currently on Pilacarpine, Plaquenil, started an antidepressant, thyroid med.  I feel very anxious and depressed but am trying to exercise some every day if possible.  Going to see my GI Dr. on Monday because of my upset stomache.  Have been taking Prilosec twice daily without much improvement.  I have two daughters who are pregnant and one due in Oct and the other in Dec.  My goal is to get stronger and learn how to deal with this so that I can help with my grandchildren.  I have good days and bad days.  Any advice that anyone wants to give me would be helpful.  I will be seeing a new Dr. in September because my last Dr. was not helpful @ all and knows nothing about Sjogrens.  I hope my new Dr. will be more open to learning and less skeptical of my symptoms.  My other goal is to feel good enough to get a part time job.  (Won't be working nights again.)  I hope this will happen.  I wish I could give someone some helpful advice but I'm afraid  that I am too new to this to be of a whole lot of help.  Just nice to know that I am not alone.   

[Joe S.]

I am sorry you joined our ranks.

Don't panic
Breathe ... meditate
Read "Spoon theory"
Some suplements are required. You can check signatures to see what others are taking.
Check everything for interactions,  counter indications,  and side effects.

management is you key to survival.

[Scottietottie]

Hi Kathy 

Welcome to Sjogren's world. No - you are NOT alone! You will make lots of friends in here, many of whom have had similar experiences to yourself.

I hope you find the site useful.

Take care - Scottie 

[slccom]

Don't forget to apply for disability!  More later. Welcome, sorry you need us.
Hugs, Sharon

[eye2dry]

Hello and Welcome.


I too,  felt like this was one unknown weird disease (still think it)

and never dreamed I would ever meet anyone with it.


I am a nurse in a dermatologist office and have met two

people with it. I was taking their medical history and they

mentioned it,

So.......keep looking and talking to people...you just

might meet up with someone else with sjogrens.

But keep coming here....you have all of us.


eye2dry

[SjoDry]

Hi Kathy & Welcome.

So sorry you had to find us this way..but you have joined the right group. It sounds like you are doing all the right things in terms of treatments & seeking out the correct doctors (and doctors
who are familiar with Sjogren's). And BTW...you are definitely not alone!

You did not mention where you live? You might be able to ask on the board here about potential doctors in your area. Also, the Sjogren's Syndrome Foundation lists support groups in most/all of the states on their site. If you find a group in your area, you may be able to connect with other Sjoggies.

There was no group here in Pittsburgh, so I (and another woman) started one. We expected one or two people to show up at our first meeting & had 18 folks. So you never know how many Sjoggies there may be around you     Our next SIP (Sjoggies In Pittsburgh) group meeting will happen on Sept. 13th...so far I have 26 people coming. The group just continues to grow as people learn about the group. I guess my point is that, there are likely so many other Sjogren's patients everywhere walking around feeling as if they are the only one on this crazy journey.

It is good to have goals to be the kind of Grandmother you want to be for your soon-to-be grand-babies. But as you said, you have good days & bad days, so be kind to yourself and be the Grandmother that you can be with whatever any given day brings.

There is a wealth of knowledge here. A book that I find helpful is: The Sjogren's Book by Dr. Daniel J. Wallace.  I am a member (as many others on this site are also) of the Sjogren's Syndrome Foundation. As a member of the foundation you receive quarterly publications called The Moisture Seekers. They are always interesting. Also, they produce another quarterly publication intended for physicians, which may interest you as a nurse. You can find that info on their web site.

The course of Sjogren's is different for all of us. I find it helpful to read, research & understand as much as I can about Sjogren's. Of course just because I read does not mean I have any control over how Sjogren's will affect me.

I find it helpful to connect to others who are on this same journey. Unfortunately, we sometimes meet so many medical professionals along the way who know little to nothing about Sjogren's..it can be very frustrating.  It can make you wonder if you're crazy & second guess yourself.

The last piece of advice I will share..is to break up your text some when posting. It is easier for all of us Sjoggies with eye issues to read.

We are glad that you are here and hope you will learn a lot on the site & make some friends as well.

Take Care.
SjoDry

[Kathy57]

Thanks for your advice!  I am from Rock Island Illinois and I have joined the Sjogren's Syndrome Foundation and received my

first Moisture Seekers and have ordered the book, but it has not come yet.  I wait patiently and hope I will get it on Monday. 

The closest support group to me is about an hour away in Iowa.  There are some in Illinois but they are farther away.  I'm 

working up the courage to call or e-mail them soon.  I feel blessed with the support  I am receiving here.  Does anyone have

a suggestion for Mouth Moisture?  The Biotene is not working well for me and I have tried Neutrasal that is a prescription but it

really doesn't seem to help that much.  Is there a prescription that I should maybe ask for?  Does anyone have a favorite

mouth moisturizer or artificial saliva?  I sip fluids frequently but I feel like I'm throwing water on a desert.  I have been

chewing Trident gum but my mouth is too sore to chew right now.  Thank you for all the suggestions and the support.  I

realize now that I am not just going to bounce back to where I was a few years ago.  I'm hoping, like all of you, to be able to

adjust and cope better.  Have a good evening! 

[Carolina]

Hi Kathy57,

Now you know LOTS of people with this condition.

AND, remember, MOST people with this syndrome go along JUST FINE.  I went along JUST FINE for many years after my diagnosis.

And the vast majority never show up here, looking for support.  They get some medications and help for their dryness, and carry on.

If you should fall into the small group who have more complicated symptoms and conditions. WE are here to give you support, information, help, and care.

Remember, very few people have serious problems with Sjogren's Syndrome.

However, the common co-conditions, caused by the inflammation that is the result of your immune system attacking your tear and saliva systems are:  FATIGUE, PAIN and DEPRESSION.

There are other co-conditons, but those are the most common.   This is why most of us find an antidepressant that can help BOTH with pain and depression.  Those are the result of the inflammation, and they are nothing to be ashamed of.

Inflammation causes the problems.

Keep asking questions, keep sharing, and welcome Kathy57.

Hugs,  Elaine

[irish]

The world is a lot smaller than one realizes. It ended up that I have a neighbor down the road with Sjogrens and RA. One of my classmates from school and a nurse I worked with plus a former neighbor ended up getting diagnosed with Sjogrens and an immune deficiency about the same time that I did. A gal from my former church who was diagnosed with RA many years ago and who had been treated with everything under the sun for RA was found to have a wrong diagnosis about 20 years later. She really has a bad case of Sjogrens. I won't tell you what big institution wrongly diagnosed her!!!!

I know that I know someone else with it but it escapes me at the moment. There are a lot of people out there and you will run into them as time goes by. Please don't get discouraged as the most important thing is to have your symptoms treated. This will help immensely. Getting cured is pretty much not an option, but management and learning to live a different life style do help a lot. Keep looking up and keep positive. Don't bother trying to discuss this much with family and friends as they don't get it and never will until they get ill themselves.

They don't understand autoimmune and they don't understand chronic illness. No one likes to think that they may end up with a chronic illness and they feel that if they ignore all info about it then it will never happen. Nothing could be further from the truth. Not many of us escape unscathed from this life so we all have to learn to adapt, adjust and perservere. Good luck. Irish

[Kathy57]

Thanks to everyone for the GREAT advice!   

[finallyadx]

Hi Kathy57 - welcome.  Sorry you had to find us but glad you did.  You will find the members of this forum to be supportive, kind and informative. 

I too have suffered from thrush - no-one has told me I could have an immune deficiency as well so I may look into that! I have been treated with the oral mouth rinse  nystatin and it works.   But I was diagnosed with sjogrens about two years ago now after much time of being sick and being doubted in the medical community.  I do have dry eyes although not half as bad as many of the other members.  Dry mouth plagues me so I use biotene dry mouth spray and toothpaste, along with some medactive products that I have received as samples and I have recently been prescribed evoxac.  I take plaquenil which when I first started it my rheumy also put me on prednisone to help calm the system while the plaquenil was given time to work.  For me it took about 6 months before I really started to notice any changes in symptom relief.  There are many medications out there that are used to treat sjogrens and finding the right one for you can be a trial and error period that you have to be willing to be patient for.

The remainder of the symptoms you mention could also be found in my medical record with the exception of anorexia - I did, however lose almost 30 pounds within a 4-6 month period unexplainably and so the tests that were being conducted originally on me all dealt with potential cancers.  It is frustrating when you are so sick and cannot have a solid diagnosis.  For me the diagnosis was keep in my "recovery" or at least my path to starting to feel better and trying to accept what I had.

I hope you can find some symptom relief.  Keep us posted and know that you are NOT alone.

Sending positive thoughts your way.

[Pisces24]

Gosh it took my 2+ years to get diagnosed too!  I felt fine but my gp was determined to find out why my blood numbers were off and wanted to catch anything early. (He has now a totally different opinion of so-called specialists now. ) Unfortunately, you learn there are drs that only can dr out of a textbook. If you fit, they are great. If you don't, they put-put around or ignore you.         I heard everything from : I think it is some type of cancer but you are not sick enough *well excuuuuuuuuse me!"  to probably something you got from your cat "which I adopted within that week."

My sinus infection are alot less and less severe since I started using the nasal rinse (netti-pot). But unfortunately, my teeth took a beating and after about 14 yrs w/Sjogrens, I need dentures now.  Oh, I had to train my dentist about Sjogrens too.

I was finally diagnosed at a teaching/research hospital and recommend them. Least there everyone wants to learn and they delve in there.  I always get the main dr and 2-3 interns and they really cover stuff. Least the main dr makes em think outside the box.  I've come to hate textbook drs!

Keep us posted on how you are doing and I hope you find a good dr/(s). You might get a few of them as you usually have drs to treat each symptom of Sjogrens, not just a Sjogrens dr. I have 3 dr covering my Sjogrens. Good Luck!