Im a newbie!

[mnlana]

Hello, my name is Lana.  I was dx with SS over a year ago along with fibromyalgia.  I am seeking a second opinion and have an appointment with an immunologist next week.  I am in denial about my health, but at the same time I am obsessed with finding out what is wrong with me.  I feel like I go to the doctor too much, about every little new thing that pops up like a new pain or swelling or arthritis.  More than not do I go away from them feeling depressed. like im not taken seriously.  My rheumatologist is a sweet person, but I think I get on his nerves about the small stuff.  What advice can some of you give to me to stop being so obsessed with myself?

[Katybarstool]

Lana, welcome!

I don't think you're obsessed at all, just that you have issues that doctors don't understand. That's common for people with Sjogren's. I think most of us have been in the same situation - often for many years.

You will get lots of good advice and information here, and hopefully begin to feel more comfortable about the doctor appointments. In my experience, doctors who blame you are the ones who don't understand.

Kathyx

[Navigator]

It can be scary at first but then when you are stabilized things become a "new normal" .. You will never feel 100% once you are diagnosed with these issues but you can adapt to them and find a new normal.

What meds are you on?

[Carolina]

Welcome Mnlana,

It is difficult when so many things are going on at once.   When everything sort of escalated at once for me, it was very upsetting.

And I'm sero normal, so don't even have a diagnosis to cling to.

But the more i read here and on other web sites, I have discovered that there aren't very many treatments, and most of what I have i can only treat the symptoms.    I'm doing pretty well with that so far.  The worst is that I can't walk very well because of problems with my feet and legs.   it is work walking, when it used to be automatic!

I think it takes a long time to get there, and THEN you read about some here like Irish (a wonderful knowledgeable poster) who has suffered for 10 years with something that may at last be recognized and treated!   it's great that a doctor has an idea what she has, but a bit difficult to accept that she was suffering for 10 years!

So it's always a toss up between acceptance and persistence in seeking more help.

I think you have to do both.   Accept that there will be mysteries, and persist in looking for answers and treatments

And, this is key for ME, accept that doctors don't know everything, are human, and do NOT have to approve of you. 

You have to approve of yourself.   That takes a bit of doing.   

It helps us understand you if you post some things about yourself in your signature line.   Age, diagnoses, and medications are pretty standard.

Welcome again.

Hugs

Elaine

[Scottietottie]

Hi Lana 

Welcome to Sjogren's world.

I guess the first step is to get over the denial!!  It's very common for us, when we get the SjS diagnoses, to go through a period of 'mourning'. We miss the health we once took for granted. We go through the five stages of grief but do eventually get to acceptance. The journey takes people different lengths of time to complete - just like grief. Sometimes its one step forward and two back - but we get acceptance eventually.

This forum should help. When you are here you are not alone. You can ask questions and read topics and get in charge of Sjogren's rather than have it take charge of you.

Take care - Scottie 

[Joe S.]

MNLana, welcome. there is a lot of information on this forum. Some of us have posted our diseases and what we take in our signatures to help others. Use our postings to help you do your own research. I have had trouble with MTX and Plaq so I use alternative therapies.

[lynnmarie219]

Hi Lana and welcome to Sjogrens World!

I think being in denial is perfectly normal at first and agree with Scottie that you have to work through it to get to the acceptance stage.

In 2004 I was officially diagnosed with Sjogrens. I had been to several doctors who thought it was probable but then I had positive bloodwork, very obvious symptoms, and a positive lip biopsy...pretty hard evidence leading to my diagnosis, right? BUT....I still came here and remember posting and asking if anyone thought I might still not REALLY have this thing called sjogrens.

Acceptance does come with time and knowledge...you will be ok!

[mnlana]

Wow! You guys are so great! Thanks for all the encouragement.  I hope you all see this posting as I am such a technophobe and I have never been on a blog thing before.

I am 38 years old. Female. I am currently taking Cymbalta for Fibromyalgia and depression.  I take Ambien (10mg) nightly for insomnia, which stops working, then I ween off and ween on and off and on and so on.  I recently started taking Naproxen as needed.  I was also on Gabapentin, but it didn't seem to help with the pain, and it made my entire body sore every morning, so I stopped taking that one.

I might start accepting my condition on tuesday, after my appointment with an immunologist. I do feel better already after hearing from you guys and reading some of your stories.  Seems like a never ending battle for most of you.