elbow pain and doctor call

I haven't written in a while.  I hope everyone is well.  I guess this is mostly a ranting message.  Just frustrated.  But, if anyone has any thoughts about anything please definitely share!!

I've been doing really well on the lower dose steroids and Plaquenil.  Until today...I woke up this morning with really bad pain in both elbows and the right elbow was so stiff and painful that it took me a while to actually extend it the whole way.  I came to work and the other nurse took a look at me and said that my elbow joints looked swollen and the symptoms continued to tightness and tingling in my fingers bilaterally.  My elbows feel slightly better now and the fingers are no longer tingly but everything else remains the same.

I placed a call in to my doc this morning to see if any changes should be made with the pain I was experiencing.  I was called back just now to be told no...no changes and that she would see me in August as previously scheduled- take up to 800mg ibuprofen daily with the meds if it continues.  I'm ok with the answer, I guess.  I'm just wondering about her thoughts behind it.  I'm wondering whether she wants to see if this will finally elicit more positive labwork to help diagnose in August.  I'm a little frustrated because anytime I call I feel like a hypochondriac.  I don't think it's the doctor making me feel this way, I think it's just me being a nurse, not wanting to bother anyone.  I'm just not sure when I'm supposed to call....for what new symptoms.

Also, I went and spent time in the mountains over the weekend with friends for the fourth.  The first day I used SPF 30 and reapplied throughout the day (which I thought would be good enough) and my scalp is burned (and now peeling) and my shoulders are burned.  The following day I used SPF 70 all day and it was much better.  But, could the sun exposure be causing the increase in pain today?

I'm hoping this email makes some sense.  I'm hoping maybe this is just a bad day for me.

Sitting at work having to stay late and feeling frustrated is NO FUN!!!

-NOLAtoCO

Thanks, Sue!
I'm glad to know I'm feeling like all of ya'll out there!  I'm gonna try the ibuprofen she suggested in addition to the pred and plaquenil that I'm already on and hopefully this will work.
I really think the swollen elbows are related to the sun exposure.  I thought I would be ok as long as I applied and reapplied and reapplied the SPF...but I guess I'm now a lot more sensitive to the sun than I was aware of....

Nolatoco,

I'm so sorry you're having so much pain and so little compassion from your doctor.

My rheumy is a woman of few words (not my favorite trait of hers) but after every single visit, as I am walking to the nurses station, she says, "Use sunscreen and stay out of the sun."

I learned the hard way to take her advice. Sunscreen, a big floppy hat, sleeves, and sometimes an umbrella. It's a bummer but it beats a flare any ol' day.

Hope you start to feel better. And don't forget about ice packs, heat, and all those things you nurses are always reminding us of. By the way, my PCP's nurse is my favorite person in the world. Folks don't realize how important it is to develop a good close relationship with their doctor's nurse. Turns out she has lupus too.

Pat

The sun can so darn easily cause a flare...
sometimes the next day, sometimes delayed a week or more.

This is a difficult disease to get used to...most of us have to learn the hard way that even those times we feel great (and want to pick up an extra 12-hr shift) we need to hold ourselves off and not go full out at anything.

Like do 1/2 of what you think you can, then stop. It's maddening, frustrating, and darn hard to pound into my thick head -- but that's the best way to feel the best I can for the longest time.

When I do as much as I think I can, I invariably pay it back by feeling worse for a few days (if not longer).

Being in a lot of sun just isn't possible anymore...direct sun for no more than 30-45 minutes, period, even with spf 70 & 1/2 way in the shade.

You'll slowly begin to learn your new body and it's limits and it's good points. I take more time to look for "the good stuff" and appreciate my life more than before.

Hang in there, it will get better,