Hi everyone

[Smee]

Hi, I'm Cheryl.

My doctor thinks I have sjogrens. My ssa and ssb were positive, my rheumatoid factor was 241. Sed rate wasn't too bad though, it's been higher. I hurt all over, and I really love being asked if it's a burning pain, or stabbing pain, a shooting pain... while you're sitting in the doctor's office with that dumb look, no doubt. I broke down in tears my first time in there, so he wants me to have a mental consult. I hurt and I just admitted it, I'm not crazy... OTOH, I've gone gluten free, and I do notice an improvement in my health. I cough less. Asthmatic, too, with 'something' in my lung.

I've always been pretty active, although I'm allergic to everything on earth and probably some things in space. I always was able to push through pain, take some advil, and keep moving. Now I find that if I do a lot I end up on the couch burning all over.

Ok, I'm not a complete whiner. I'm a mom, I'm 46 (I think!) with 2 really great boys and a pretty good husband. I love my horses and dogs, and we live in the country. I've been homeschooling a few years now, and I'm a photographer. Hi everyone, I'm sure glad to find you all! I hope to learn and to share with all of you.

Thanks,

C.

[Carolina]

Welcome, Cheryl,

You've found a great place to share, laugh, get hugs, and support, and GREAT information.

This is an on going condition, and we all need on going support, at least I do.

Keep us posted on how you're doing and what's going on.

Kisses

Carolina

[Patze]

Hi Cheryl,

Let me also welcome you to the SJS World and family!  Please do look around the board as there are tons of topics and scads of information not to be believed!  Shucks, I often come here just to read as I learn to much more here than with the rheumy!  And let's not mention this is one of the friendliest boards around!  Shhhhh, this is just between us, right?

Yeah, I'm another one that pushes through pain, and there are days that I wonder where I'm going to make it....ugh.  The rheumy has switched around my meds again and this time it's helping a bit more than the first time I tried Flexeril (OTC for the pain).  But nothing is touching the exhaustion and the insomnia, my gosh, I'm lucky if I get to bed by midnight these days (still working full-time).

I'm sorry to hear that you're having so many problems with allergies, and you'll find tons of members that also suffer from them.

Again, welcome and I hope to see you around the board.

Take care of yourself -

Patze

[Smee]

Thanks much!

In a way it's a funny kind of relief to finally have a bloodtest say what I've been telling the doctors all along. I hurt.

I haven't gone to a rheumatologist yet, my present doctor is an environmental allergist and he's the one who did all these blood tests. I swear he bled me dry... LOL Unfortunately he seems a little stuck on the whole 'are your eyes dry' thing, and hasn't said too much about the other factors of this syndrome. I'm learning a lot online. But yes, my eyes are dry, they've bothered me for years. Ahem. Some other things are dry too, so uh, do all of you find you need to find a gyno that is aware of dealing with this syndrome more fully, or does your rheumatologist help you with some of your questions?

[Scottietottie]

Hi Cheryl 

Welcome to Sjogren's world. Now you know you have Sjogren's you will probably find that you pick up quite a few 'ologists' during the next few years. A rheumatologist or immunologist is a good stsrting point though.

I hope you find the site useful.

Take care - Scottie 

[Carolina]

Ahh, every doctor you see should be in on the Sjogren's, as it affects everything!

Eyes, ears, teeth, vaginal dryness, joints, bladder, you name it, your doctor needs to KNOW, or to BE EDUCATED on the possible effects of Sjogren's on his or her patients.

I taught my Cardiologist about the link between peripheral neuropathy and statins, and my orthopedist that you can have peripheral neuropathy as a result of Sjogren's.  He didn't know a thing about that.  But He's the one who said my headaches were probably sinus related due to my Sjogren's!!!

So I need to see an otolaryngologist to have my sinuses looked at carefully.   Somehow that's low on my list right now, but I don't know what.  I guess it's a pain that i  can tolerate pretty easily.

I had a rheumatologist who didn't know a THING about Interstitial Cystitis  or Peripheral neuropathy.

And I was BLESSED with a gynecologist who identified my interstitial cystitis because he knew I have Sjogren's!  He sent me to a urologist who did the cystoscopy of my bladder and found the IC.

And so it goes.  This is what is called a 'unifying diagnosis'.  Even my anemia, which had no apparent cause, is related to my Sjogren's, and now that I know that I just take the iron and forget about it!

Keep us posted on your progress and life, Cheryl.

Kisses

Carolina

[Smee]

OMG I never thought about my nasty sinus headaches as being related... I'm seeing so many things with possible correlations. Wow...

Immunologist too? and what exactly would they do to me? (exaggerated fear shiver lol)

The other day he asked what hurt because he wants to get xrays of a part of me (I dunno why) and I settled on my neck. It was really hard to choose... and I thought later I should change that to my knees, because they stop me from doing so many things. Sigh.

I've found myself being afraid of the drugs, and the book I brought home brought up that fear, so I guess I'm soooo not alone.

Tonight's a tough night for some reason. Everything hurts, I took tylenol and the happy little herbs, and nothing is touching it. Can someone just knock me out?

[Pisces24]

Well Smee I had sooo many tests run on me over the 6 years before I got diagnosed with Sjogrens. Would you believe I once used to agonize over a simple blood test?  I've had soo many of them now it is no big deal.  I actually had them take out 18 tubes at one sitting once via arm. Wow. Nurse actually told me the most they've done is 30.

As to sinuses, my immunologist (the guy who diagnosed me w/SJS) suggested I do sinus flushes and was surprised no one had ever told me about them. It is pretty simple and not yucky. It has really cut down on the number of and severity of my sinus infections and I'd recommend that you ask about it if you have that kind of problem.

Cheryl: Us gals just put up with stuff and power through until we almost hit a brick wall or it hits us.  We are great at taking care of everyone else but not as good taking care of ourselves. I've been learning but still have to tell myself "I should". 
And I've actually learned to be proactive with the doctors.
Welcome to the Group!

[Smee]

Funny how it's harder to be proactive with yourself than with your loved ones. I was my mom's primary caregiver for the last few years of her life, and had to learn to be... assertive... that's the codeword! I've learned to be a little more stubborn about myself, too, and have ticked off my GP immensely more than once, but every time I was right and he was really good about acknowledging it after the fact when I showed him the results. I'm also glad I was trained as a medical transcriptionist and have been able to use that education to decipher what they tell me more than once. (Of course, the arthritis and carpal tunnel got so bad by the end of my 2 year course I couldn't make a living that way!) It is kind of scary when I think of my mom and find myself having pain in some of the same places and thinking, oh dear god, I don't want to end up like that... Her last years were a nightmare of pain and locked up joints and surgeries gone wrong.

Sinuses: I have one of those little machines that spurts water, got tired of faking it with a giant penicillin syringe. Works pretty good, but I find I have to be really careful not to catch myself swallowing, or I'll get junk backed up into my ears and a huge earache. I live on Zyrtec anyway.

It is absolutely a fact how we tend to care for everyone else...

I'm already learning so much from you guys.

[cat]

Something you can use for you sinus is the nettie pot. It's inexpensive, easy to use and does a really good job of clearing you out. Hope this is useful.
Cat

[lynnmarie219]

Hi Cheryl and welcome to Sjogrens World!

Feel free to come here for information, advice, to vent, laugh, cry, and find friendship! This is a safe and comforting place with many knowledgeable people who come here on a regular basis from all over the world.

Glad to hear that you feel you have already benefited from finding us ! It's a great place...at least I think so!