New with Questions (of course!)

Hello-
I've been silently lurking on the boards for a few weeks as I have been home waiting to a) get a diagnosis and treatment plan or b) get better enough to go back to work. But...I'm still here waiting!

Anyway-I have had chronic back pain for about ten years, which I recently had diagnosed as osteoarthritis in two discs of my lower back. In addition to that, I've been dealing with horrible fatigue, muscle weakness, inability to drive for long periods because of pain in hands and arms, etc. I have been seeing a rheumatologist for a few weeks because initial labs showed inflammation and elevated ck levels. Long story short, we have done all the testing for lupus (all of which were negative), we've done an emg (normal) and we've done cat scans to figure out why I am also having blood in my urine. (so far no ideas).

This week at the dr, she said she thinks I have multiple things going on. She thinks I have fibro as well as some other thing that is causing the inflammation, so she wants to treat the fibro and see if we can then narrow down the symptoms to determine what that mystery ailment is. She added Lyrica to my ever-growing list of meds (naproxen, prednisone, wellbutrin).

To be honest, I am so discouraged by this whole process. I haven't been able to work in two weeks (I have an hour commute, so I can't manage that at all and all the med changes have made my loopy). I am so much pain, I'm exhausted, and I'm just frustrated!

I have read alot of stories and posts about people getting a fibro diagnosis after they had a diagnosis for other stuff, but I haven't read many the opposite way. Did any of you get diagnosed with fibro first and then get diagnosed with some other auto-immune disorder? Are there things I should be tracking to make that other diagnosis easier? I have been tracking morning stiffness, and pain levels.

Any tips for adjusting to a new life of chronic pain? When I talked to the dr about what was going on, I sorta thought she would just say I need to lose weight and be more active. I wasn't prepared for multiple weeks of testing, multiple things being wrong, etc. I am having a rough time switching over to this new reality.

M

Hello Michelle,

I was diagnosed with Fibro and then later MCTD. I have become fairly good at figuring out which one is attacking at which moment.

You absolutely can live a relatively normal life. . .it is just a different life.

I work full time, am a wife, mom, step-mom, and step grandma. You just have to learn to pace yourself, and be creative.

For your tracking also track foods and activity. My rheumy also had me track my weight as when I am inflammed I will "gain" 5-10 lbs of fluid.

T

Hi M,

Welcome to our forum of phenomenal support. I was tried on medications one at a time on my insistence because they all caused me side effects and they didn't help. I hope you're not on all those medications at the same time. My rheumatologist told me that many people with fibro are medication sensitive. So be careful, I think doctors tend to overprescribe.

Can I ask if the blood in the urine began after starting a medication? We need to do our own research. Our doctors don't tell us about the side effects so it's nice to look online like drugs.com for side effects of specific meds.

How I deal with what my rheumatologist calls my severe fibro is I eat healthy at all times, I walk everyday and try to be as active as I can, I take supplements that work for me, and I try to keep my stress to a minimum.

Speaking of what I eat, yesterday I had a craving for a fast food flat bread with turkey and veggies. I suffered for it last night pain wise and burning all over and had a lot of difficulty falling asleep. My chiropractor told me this morning I probably had such a severe reaction to the gluten because I had not had it for several months. Just another good reason for me to stick to my healthy diet. Some of said to me they'd rather stick to the bad foods so they don't get such severe reactions, I say there are a lot of very good healthy foods out there.

Good luck to you.

I forgot to tell you that I always have scants of blood that show up in my urine they say. I have had kidney stones in the past, but they don't know the reason. When I go to a new Dr., they say by the way you have blood cells in your urine. I don't let them keep testing because they have done that too many times. So I was just saying you might not never know why. You can't even tell, it's just the dip stick shows blood cells. I just put it on my fibro list. Lol.

Sorry if I was confusing! She is diagnosing fibro based on my pain. She thinks the inflammation is something else but isn't sure what it is yet so we still have to work on that. I am lucky- I have lots of stuff wrong for her her to figure out! :)

Sherrine-
Sounds like we are in a similar situation! I had been taking lots of ibuprofen too and dr asked me to stop and that's when I went from feeling pretty bad to pretty much incapable of doing anything. So far, the lupus markers were all negative, but esr, crp and my complement levels are all elevated. So...we'll see! I just want to get better! I hate that doing the dishes makes me want to go back to bed!

Thanks for the welcome. :) I really appreciate the support and all the great resources here.

Michelle