Newbie here

[Guest guest]

Hi everyone! My name is Jen and I'm new here. I'm 34, and from Ohio.

I am married, and have 2 daughters, ages 14 (almost 15) and 12 1/2.

I also have Fibro, chronic widespread tendonitis, sacroiliitis, and my

PM doctor said he's convinced I have some other sort of auto-immune

disorder, one that causes me to have severe joint pain (especially in

my SI joints) that mimicks arthritis, because my C-reactive protein

level is consistently high, despite the fact that I take both Plaquenil

and Celebrex. At first he thought I had something like Reiter's or AS,

but an MRI of my SI/hip area came back basically normal. So his

thought is that something auto-immune is, in his words, just simmering

below the surface, either not yet able to be detected by standard

tests, or it's something that requires more specialized testing. Right

now we are in the process of deciding if I should see a rheumatologist

or immunologist. I also have Baker's cysts on the backs of both knees,

which is something that is typically found in someone twice my age. He

said that there is no way I can have all of these symptoms and " just "

have Fibromyalgia. And actually, he's not so sure that what I have IS

Fibro....he thinks it might actually be part of the whole auto-immune

thing mimicking the symptoms of Fibro.

It's very frustrating to have all of this going on, and to have so much

pain, and not know what is causing it. It all started about 3 1/2

years ago, after a very severe adverse reaction to an antibiotic called

Levaquin, which was a horrible experience. That triggered an auto-

immune like response, and the PM doctor thinks it might be a big factor

in what is going on with my body even now. I was treated for the drug

reaction with steroids, only to find out that they are contradicted

with this class of drugs, and it made my reaction a whole lot worse.

You are supposed to be safe to take steroids again after 3 months, but

I still have problems with them. My PM doctor has been doing

injections into my SI joints, and for about 3-5 days afterwards, every

part of my body BUT my SI's is a screaming, painful mess. My joints

and tendons flare up almost like I am reliving the Levaquin nightmare

again....but it's so weird that my SI's feel better!

It's hard not to get down about all of this sometimes, wondering what

the future is going to hold for me. Am I going to be able to continue

to work 10 years down the road, or even 5? Even though I have adequate

pain management, my pain levels are worse now than they were when I

first started having chronic pain. I want to keep being an active

participant in life, being a positive role model for people with

invisible disabilities, and keep working, but there are also SO many

times when I just want to stop, to lay down and say " I've had enough!

I've fought the good fight and now I'm too tired to do it anymore! "

Sorry, I just felt like I needed to let that out today. Normally, I'm

a pretty cheerful, positive, and upbeat person. Today is just " one of

those days " . My body is tired, and my brain wants to take a rain check

on the real world for a while!

I look forward to getting to know you all, and hopefully you all

getting to know me on a better day! And if any of you have any hint of

what might be going on with my auto-immune system, or could steer me in

a direction I haven't been, I'd love to hear from you!

Blessings,

Jen