Hello everyone. Newbie to board and Sjogrens :)

[hnybny91]

Hi everyone.  My name is Deb and I have been suffering for three years now.  Started out as right hip pain that led to a CT scan that led to an intra-vaginal ultrasound that led to exploratory surgery that lead to a hysterectomy (all w/in two months!) After all of that I still had the *&&^%$ hip pain...LOL.  After a year it turned into random joint pain and w/in another year it turned into hurting all over.  All of my arthritic panels came back normal so doc dx'd me w/ Fibromyalgia.  After about a year w/ that dx I started to have some neurological symptoms.  Doc ordered a MRI that came back normal so he sent me to see a Rheumatologist.  That is when I found out that my SS-B was positive as well as my ANA but I wasn't above the 1:40.  A second test a few months later showed that I am now at 1:40 with a speckled pattern.  I guess the next step is a lip biopsy.

I have also been to see an Infectious Disease doctor because my normal temp is around 99.5 and so Rheumatologist wanted to rule out anything odd.  No cat scratch fever, no HIV, nothing my birds could have given me and two sets of blood cultures cam back normal.  Just this week I went to go see a Cardiologist because my heart is experiencing weird beats every so often and I can barely make it up the stairs in my house without stopping to rest half way up.  At the end of the month they are going to attach a halter monitor and give me a chemical stress test. 

I am just so sick of all of the tests, blood work and specialists.  I have a feeling that EVERYTHING I am experiencing is related to the Sjogren's. I am also tired of felling like a worthless piece of crap because I am always tired and either laying on the couch or in my bed.  I'm sure my family just thinks I am exaggerating

Anyway, I just wanted to pop in and introduce myself to you all.  Have a great day!

[Carolina]

Welcome Honey Bunny!

Love your name.

You are going through heck.   Fortunately my rheumatologist diagnosed Sjogren's right away, even tho' every test came back negative.  This was 8 years ago.  I started with the classic dry eye dry mouth.....abraded corneas from my contacts, etc.  She is one of the BEST doctors I have ever known, bless her.

She said why bother with a lip biopsy, the treatment is the same with or without a diagnosis of Sjogren's.

Now of course I have two other autoimmune diseases (co-conditions of Sjogren's):  profound Peripheral Neuropathy diagnosed from the Nerve Conduction Velocity Test, and Interstitial Cystitis on inspection of my bladder.

I'm STILL sero negative by the way for Sjogren's..  So much for the tests.

Honey, PROFOUND exhaustion, pain and depression occur in 50-75% of people with Sjogren's.

Hang in there, YOU know what is going on, and only you.   You will have to learn and educate the doctors, cause most of them don't know a THING about the ramifications of Sjogren's, even when they are Rheumatologists, for pete's sake.

One of the co-conditions of Sjogren's and all AI diseases is anemia.   So be sure they're checking for that too.

You are in the RIGHT PLACE for:  everything, information, answers to your questions, a place to vent, and place to laugh and cry and share.

This is the greatest group going.....bound by one of the most miserable, misunderstood and frustrating conditions around.

The doctors will test you for lots of things, and they have to do that.  Because they have to rule out a ton of stuff, since Sjogren's is so variable and difficult to get a handle on.

Once I started reading here and other places, I was so HAPPY to find that EVERYTHING that is happening to me, and HAS happened to me, is related to my fierce immune system.  I have had auto immune insanity since birth, with srvere severe eczema....I can't tell you how severe except that it had it on my nipples and my entire head and body as an adult.

My coronary artery disease is the result of an inflammatory response in my arteries, my UTI's, my eye and mouth problems, my pain and fatigue, my constant UTI's, my dizziness and falling, my headaches, everything.

At least I have the comfort of knowing that I'm falling to pieces from one condition!   :-)

I am also a bit crazy at times, you  may notice this

PLEASE keep us posted.

Please ask your questions, talk about your worries, concerns, and frustrations.

And of course your victories. and happy news.

Kisses

Carolina

[hnybny91]

Thanks for the welcome Carolina.     I am only 38 years old and am usually the youngest in the waiting room at what ever "ologist" I see that month...LOL.  I have already met my $2500 deductible on my health insurance this year!  At least I am getting a brain to toe complete physical...I just have to see many doctors at differnet times...ha ha. 

Question, I am having HORRIBLE bouts with constipation.  I am basically down to eating a Carnation Instant Breakfast shake in the morning, Yogurt mixed with fruit and granola for lunch and something small and easily digestible for dinner because of it.  I was told that it is because I am on Cymbalta for the fibro and the pain meds (although I am no longer on those as they have all run out - it was percocet and vicoden as tramadol did nothing for me.)  Does anyone else have this problem with constipation?

[Smee]

Welcome! I'm new here myself.

Pain meds will do it for you, yes. Cymbalta I'm not sure, I don't remember. Seems like my poop wasnt' right and it stunk something terrible. Took that for a few months. It didn't help my pain and it made food taste bad, especially meat, for me. I quit.

It doesn't sound like you're getting much fiber, doesn't that make your constipation worse? Or are you just afraid to eat in order to not stop yourself up? I'm so sorry!!

I've fought with alternating diarrhea and constipation for the last few years, the doc tested me and I came out allergic to gluten. I was to the point that I was in and out of the bathroom all day long, and scared to leave the house, alternating with days when I could hardly move from the pain in my guts and feeling of fullness. When I started looking things up I found that celiac disease often goes with the other auto-immune 'gifts'. Since I've cut wheat totally out of my diet I have really noticed a huge difference in my digestion. Good probiotic yogurt, not the sugary kind, as well as eating beans and steel cut oats, switching to brown rice instead of white, all those things will add a lot more fiber to your diet and should help.

One thing I've read briefly, and haven't followed up on (because frankly there's so much to follow up on) is the connection with difficulty digesting food properly with sjogrens so as to extract all the nutrients. The action of saliva begins the digestion process, and many of us are lacking spit, so I'm wondering if that isn't part of the digestive issue. I'm wondering if taking a digestive enzyme product would help. (yay, more tablets...)

And yes, I totally understand the guilt of exhaustion and feeling like you're being lazy. I'm so sorry...

[Scottietottie]

Hi Honey Bunny 

Welcome to Sjogren's world from me too. 

Take care - Scottie 

[hnybny91]

Smee,

I have tried eating more fiber and it does nothing to help the constipation.  Honestly, even before everything started I was an every-other-day pooper at best so constipation has always been something I have had to deal with on and off.  I will mention it to the Rheumatologist when I go back in July for my follow-up.

Thank you for all the warm welcomes.  I am so happy I found this place

[Carolina]

Dear Honey,

I'm fairly new and still learning, but I "think" maybe the constipation may be the result of neurological damage to the gastro intestinal system.

I'm going to check it out further.

I'll keep you posted on what I find.

I never had a problem until the last 6 months, when my PN got lots and lots worse.

More later,

Kisses

Carolina

[Bucky]

Hi Deb . . . welcome to your new Sjoggie family.

There is lots of information found here on the forum.  If you use the search box in the top left of the page, it will take you to previous threads about various subjects (constipation, fiber, fatigue, etc.).  You could spend weeks here reading and still not finish.    Although, some members have more advanced Sjogren's than others do - we're each individual and some may never develop much past the dry eyes and dry mouth.  So, don't let what you read scare you.

Do you drink a lot of water?  That might help with the flow of body waste.  

We're a worldwide community joined together by Sjogren's.  Hope you find this forum helpful to you.

Bucky

[Pegasus47]

Hi Honey Bunny:

Welcome on board.

Your doctor maybe on the right track.  Hurting all over is consistent with Fibro.  ANA is very specific for Lupus.  Hall mark for Sjs is dry eye, dry mouth at early stages.  Treatments for most autoimmune diseases tend to be very similar.

How are your bowel movements?  Constipation is a major problem - can't clear waste and store up toxic materials.  Drugs tend to bind to the liver- clearing them out of the body is vital.  Otherwise, the side effects build up.

Anyone tried just using magnesium 250mg to improve bowel movements?  Otherwise try metamucil, make vegetable fruit smoothes, increase bulk in diets.  Drink lots of water. 

I don't have consitpation- just the opposite.  I have to go 3-4 times in the morning- and then I weight myself - how about that!

I do believe in a cleansing diet at least once a year to clear all the toxins.  Let the body get back to equilibrium again.

Hope this is helpful

Pegasus

[Smee]

yup. magnesium helps. lots (too much) vit C too.

I got into some lunchmeat yesterday, so now constipation is not my issue. lunchmeat has gluten. Who knew?

[lynnmarie219]

Hi Deb,

Just want to add my welcome to you as well to Sjogrens World! So glad you found us....feel free to come here often to find information and support, to vent, cry and laugh as well as to find friendhip!