Weird appt with my rheumy - what to believe?

I've been having a lupus flare for a while now, at least that's what my rheumy said in October. He increased my prednisone and put me on plaquenil.

I'm not really feeling any different right now....well, the "floaty" feeling that I was complaining about and the vertigo do seem to be a little bit better. Maybe the highter pred dosage is helping. But my brain fog was really bad during the appt, I wasn't coherent and I didn't ask him all the questions that I wanted to.

He made a strange comment when I asked about my lupus flare, he said that I seemed to him like it was my fibro flaring now, not the lupus. He pinched a couple of my tender points on my arms and of course it hurt like heck, so he seemed to feel that validated his assessment.

So now the vertigo and double vision and blurry vision etc are due to the fibro and NOT lupus?? Now he's increased my Lyrica from 150 mg to 450 mg per day!

I'm confused. Does this scenario sound familiar to anyone else?

Thanks Judy....it's always kind of confusing having multiple disorders. You're never sure which illness is causing which set of symptoms.

I guess I just wanted to vent a little, 'cause there's really no way to resolve my confusion. I'm just a bit frustrated! :)

Thanks for your perspective, Lynwood.....I do know what you mean about doctors and their biases! :)

I've had 3 different rheumys in the past 2 years; my current one is a fibro specialist, although he's the one who dx my lupus. He runs a research clinic at UCLA for fibro. He prescribes meds for me for both fibro and lupus, so I guess I'm covered. He did increase my pred dosage when I had the lupus flare, and it seemed to help a little (not enough). Now I'm back to the vertigo and brain fog big time, but since I'm not showing the malar rash he says it's the fibro....I just don't know.

I agree too that drs may not always be useful, except to order tests when you need them, LOL! I know that [iI'm the one who perseveres to figure out what's going on....I'm usually the one who suggests that I be tested for this, that or the other because it matters to me! The key, I guess, is to find a doctor who's willing to listen and go along with your investigations and order tests for you.

And now I've found out that I may have Lyme Disease, and my rheumy says he doesn't believe in chronic Lyme! Well, I anticipated that reaction from him and made an appt with a Lyme-Literate MD this month already.....we'll see what happens next!

My medical issues are always an adventure! :)

No it's my fault, my post wasn't very coherent! :)

He told me in October that I was having a lupus flare, and upped my pred at that time. Now, when my symptoms got bad again he decided it was not lupus but fibro this time. This time he increased my Lyrica from 150 mg per day to 450 mg per day!

I guess I didn't look "lupie" enough, so it's fibro....? It's just so confusing to me. :)

Patty, I totally relate to the check writing thing....I really have to watch myself when writing or typing. It takes me 5 times as long as usual because I reverse letters and numbers and do the craziest things and I have to double and triple check myself.

Good thing that person you paid was honest!! :)

Thanks Stacie! Today I felt like I had a little more energy and I didn't "crash" in the afternoon like I usually do, so maybe the Lyrica is making a difference there. But the vertigo was no better....so maybe that's not a fibro thing?

Your prayers are very much appreciated!
(((hugs)))
JoAnn

Oh wow. I am sorry bout the confusion. Jeepers, I have a hard enough time at the Rhuemy dealing with just lupus, I can't imagine having to add other issues to talk with my rhuemy about.

How are you feeling today with the pred increase?

(((( JoAnn )))) praying for your doctor's appt on tuesday, please let us know how is goes. Take care my friend

Just a couple of suggestions and an obervation.

I've found it helps to make up an outline before I go to a Dr visit.  That way I know nothing will be overlooked or we won't get sidetracked on something that's not that important.  I've also found it helpful to take my wife with me to most of my Dr visits.  It helps to have someone else there and then you don't have to try and tell them what was covered in the visit - cause they heard it first hand.  Can someone go with you to your appts?

Sorry you're having to deal with the chronic lyme thing.  It's an ongoing struggle.  Don't let them wear you down tho - it's important to get it treated.  Also - hate to be the bearer of bad news - but you may have a "triple witching" thing going on - and your treatment is more complicated if you have lyme.  Steroids - like prednisone - reduce inflamation - by suppressing the immune system.  So ... if you have an infection and are taking it - you could be turning the infection loose because you've further suppressed your immune system.

So ... there is the possiblity that while you're improving one thing with the pred, it's also making something else worse.  Maybe that's why it's been so difficult to get overall improvement?

Oh well .... I hope for all of us that 2010 is better than 2009.