Tuesday, March 1, 2011

The More I Learn, The Less I Know....

Life as a Lupie isn't easy. I'm fairly acquainted with most of the symptoms and medications used to treat this condition, but every once in a while, I'm kind of blindsided by another new symptom that reminds me that Lupus is Still Here.

This morning, after I finished taking my handful of necessary meds, I felt a strange tingling, then a feeling of numbness along my left leg, my left arm and hand.

OMG, I'm having a stroke, was my first thought. Yep, always go to the Worst Case Scenario, and then the REAL explanation won't seem nearly so bad. Right?

I then went to my computer to check my emails, and sure enough, there's an email from a fellow Lupie on the board, telling me about peripheral neuropathy.

Now, I have peripheral neuropathy in my feet, since I'm also a Type ! diabetic, so I'm acquainted wiith the feeling of pain/numbness/tingling if I don't take the Flexeril for a day or two. Of all my meds that I refill faithfully, this is the top one. I can do without the Plaquenil for a day, or the high blood pressure med, even, for a night, but oh, I can't do without the Flexeril.

I had tried Neurontin and had an adverse reaction after two weeks. I won't go into details, aren't you glad -- because I think I've already blogged about it earlier. Anyway, I told my rheumy of that awful experience, so we brainstormed on what type of med I could tolerate, and landed on good old Flexeril, which I had taken a long time ago.

So, long story short, now I know, thanks to the online support groups called LUPIES, a yahoo group, I have the information I needed to deal with this latest odd syndrome.

If you're reading this, and are not in a support group, go online to LUPIES@yahoogroups.com . You'll find answers to your questions and a whole lot of understanding.


  1. Hi Marilyn, i understand a little bit of english but i can see that you are dealing with some rare syndrome, im sorry to read that, i´ll pray for you to feel good, hugs from méxico!

    1. Sorry I just now noticed your reply. Thank you for your comments.