New here, but not new to sjogrens

[PattyAnn]

Hi, I am a 44 year old mom of 3. I have been reading this board for a while, and have now decided to jump in. I was diagnosed 18 years ago at the age of 26. My experience with being diagnosed was not typical.

First symptom, was an allergic reaction to a slight sunburn on my face, (weird spent my whole life out in the sun all day) Doctor gave
steroids that cleared it up.

Second symptom, Woke up with pain in my right wrist, hurt so bad, couldn't even hold a cup of coffee.Went back to doctor, he asked if I had any other kind of weird things going on, well there was the allergy to the son, and told him to look at my feet, They were purple, and this had been happening when I didn't wear socks. He took some blood, would call me to come back when the results were in.
When test came back he diagnosed me with Sjogrens, RA & Raynauds.

I know my story is long but I feel it is important for anybody out there who is diagnosed you so they don't head down the road I did.

I was sent to my 1st Rhuematologist, Who put me on a med( so long ago I don't remember what it was. Was told to treat with eye drops, drink lots of water and see you in a year. I was under the impression that this was no big deal.

I didn't have problems with my eyes or mouth being dry as any of my symptoms, Had very little problems with my health, so I shortly stopped taking the medicine.

I was fine for about 2 years and then one day had this horrible paint throughout my whole body.

2nd Rhuematologist, asked if I wanted more children, told her I was thinking of trying for one more, She then told me there was nothing she could do for me until I was done having children, so come back then, use eye drops drink water, take tylenol for pain
Pain seemed to go way in a few weeks, and I was back to normal.

Finally had my 3rd son, and that is when things really started to change Marrige went Bad and very stressful, made me totally sick with so many symtoms.
My old family dr was nolonger practicing so I started with a new doctor, He wanted to send me to a Rhuemtoligist, I was like no way, so he agreed to treat me. Methoterxate, 6 pills once a week. This would make me feel sick for the next 3 day.

Finally got a divorce. No stress made me feel so much better. I stopped the meds.

Pretty much fine for years.

Until Sept 2014 When My Father suddenly became ill, and passed away within 1 month.
I have since been in contant flares, with pain and absolutely no energy, have the added diagnosis of Hypothyroid, now taking meds for that, Plaquenil and Anti-depressant.

Now I am doing my research, Finding all the info I can and will Be seeing a Rhuematologist in the near future, But I want to educate my self first.

I worry that putting off treatments for all them years could have possibly made all this worse.
So if you are young with not many problems, understand if you have a clear cut diagnosis, That you are sick, even if you don't feel it, and get on top of it

Again sorry for the long post

[Carolina]

Dear PattyAnn!  Welcome welcome welcome.

And your post isn't too long.  So don't worry.

Your case isn't typical.  You were diagnosed early, which is very unusual.

And you have clear diagnostic markers.

However the progression of your condition was slow and that can be more common, I think.

Those who post here, by and large have symptoms and conditions at the far end of the spectrum.  We are not typical which is why we continue to seek information, support and sharing.

Take what you need and leave the rest.

Welcome again.

Hugs,  Elaine

[warmwaters]

Thank you for sharing your story with us, and welcome.

There's a wide range of experience with this disease, and it's good for people to know that.

Best of luck in finding a doctor you can work with.

[A66eyroad]

Your story sounds very stressful! I'm so sorry you've had to go through all that, and I'm sorry for the loss of your dear father.

I'm glad you found us! This is a great forum with lots of very caring, very smart, very verbal people --- and now you're one of them! There will always be someone who will help you, and someone you can help. You're always encouraged to help anyone else who might be in need of something only you can provide. So jump right in there and post away!

[finallyadx]

Welcome to the forum - it is filled with kind, supportive, knowledgeable folks.

I am sorry for your loss as well - I lost my mother three years ago and was diagnosed shortly after losing her - it was a whirlwind year for me.  The stress of losing a loved one put me near the edge - health-wise...so if you can, try to pace yourself and try your best to not get too stressed - I know easier said than done! 

I was hesitant to start plaquenil as well - many of us are very hesitant in taking medications but many of us find after we have started them that they make a difference and we are glad that we did finally start on them.  That being said, medications can be scary and putting off taking some is ones own personal decision and should not be frowned upon by anyone else.  You are taking plaquenil now and hopefully it is making a difference for you.

Try to take care of yourself over the next year and the years to come.

Sending positive thoughts your way.

[eye2dry]

welcome Pattyann.


I can see by your story that stress has seemed to trigger all your

flare ups. When you have autoimmune diseases.....stress is not your friend.

But it is so hard to avoid entirely..

I hope you can get the help you need with your next rheumatologist

Give us updates.

shelly

[PattyAnn]

Thank you!! for all the warm welcomes and kind words.

You all seem like a friendly group.

And yes stress does seem to be toxic with this

[susanep]

Welcome to this board. I wish you didn't have to be here, but having all these things you are at the right place with others who do understand. It sure helps to know you are not alone.

Hugs,
susanep

[Joe S.]

Welcome, Patty Ann. I had so many problems with traditional meds that I had to go an alternative route. Check all medications and supplements for interactions, counter indications, and side effects.

Some of us have posted what we take in our signatures.

[PattyAnn]

Thank you, it is great to know that there are people who do understand this and how it affects us.

I have been doing alot of reading here and I am interest in alternative routes, because well I really just don't like drs much

[Joe S.]

I am sure a lot of us would understand that. Doctors do have their place as your assistants in your war against the health challenges that you face. All is fair in war, so do all that you can to win your war.

"Spoon Theory" may help you understand good days and bad days.

[cccourt1942]

I worry that putting off treatments for all them years could have possibly made all this worse.

Patty Ann,

Weighing in on this a bit late.  This statement haunts me.  I thought this in the beginning.  I quickly realized I was busy living life while my body was being attacked by SjS.  I worked part time for ten years past my formal retirement.  I traveled with my grandchildren.  I buried a husband.  I was uncomfortable.  My energy level slipped to zero.  I never thought I was ill.  I thought I was old.

There are several of us on the forum in our 70s.  I believe I am the only one diagnosed after I was in my 70s.  Doctors have used terms like "high pain tolerance threshold", "strong constitution", etc. to describe me.  Not so.  Living got in the way.  Don't think I don't realize earlier intervention would have saved the hardened states of my lacrimal and salivary glands.  I can't do  anything about that now!!   Don't beat yourself up for ignoring your dx while bearing and raising your 3rd child, going thru the trauma of divorce, and burying your dad.     You were going through life and caring for all in your path.  As a mom you know we put our needs on the back burners!! 

You are "there" now.   Time for you.  And...you are HERE!  Find support and solace here.  Good luck with your physicians and future treatment.

Keep us updated.  c3