After seven years, I thought I had it all figured out: My body's response to Sjogren's Syndrome was X,Y, and Z. Right. And of course, as when happens every time I make an assumption, I'm proven wrong.
Over the last week, I've been dealing with a flare. A really nasty one. And this particular episode brought with it a few new symptoms - hot swollen joints in my fingers:
(Ew. Disregard the cuticles, please......) and brand new version of skin lesions:
I made a trip to the Rheumatology dept. of my clinic and saw yet another new rheumy. He took one look at my spotty legs and said, "Oh, hey! Sjogren's spots!"
I immediately liked this gentleman. He seemed to know what he was talking about.
He took a close look at my hands. "I'll bet this hurts a lot. I can inject something into this joint - steroids and a numbing agent - that will make it a lot less painful."
I wanted to grab this gentleman and give him a big old bear hug, but my hands hurt too much.
Today, with pain medications and even more prednisone on board, I'm feeling much much better. Especially since John brought in a spray of roses from one of our floribunda bushes.
I think I'm going to make it.
6 comments:
Hi Julia--I get spots just like yours--on my legs! Where are yours located? I also get petechiae on my feet and lower legs, especially when I stand too much on my feet. Feel better, and soon!
What a bummer...just as you think you've nailed it down pat, something else/new crops up!!At least you had an understanding and sympathetic doctor to deal with your ailments. BTW, those roses are absolutely beautiful. I'm betting their scent is way, way better than flowers bought at the florist's. Julia,keep well and hope you're better soon.
Thanks, guys!
Red, yup, spots on my shins.
annie - yes, even I could get a whiff of their scent.
Hi Julia,
I get spots on my legs too. They pay me a visit about 12 to 16 weeks. My rheumatologist says that it vasculitis. The first time it showed up they were every from my knees to my toes. Now when it shows up it isn't as bad, but it is a bit of a bummer. Just when you think they are gone, wham they are back. Kind of like an extra period, as if one wasn't enough.
So sorry to hear about your painful hands and rashy spots, Julia. Just glad you have found a wonderful new rheumy.
Love your roses...
Hi Julia,
I have had Sjogren's of over 10 years and as a result arthirits and all the other various symptons . A few months back I started a no grain diet - specially a no glueten diet. It had really changed my life. Of course dry eyes and dry mouth are here to stay but the joint pains are so much more better. Fatigue is much less, I am less irritable, life is less of a chore. My moods are more upbeat (for much my husband is grateful). And if I am disciplined enough to do Yoga a few days in a row - i can pretend for a few hours there are no problems. And yes going by the zone diet more or less also helps. Just wanted to share this
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