Hopefully good news...but need help???...
 

I got to looking at the Stanford Pain Management Center today & found that they are recruiting for a study, Intravenous Lidocaine in Neuropathic Pain. Which is exactly what I think I need to put these strange flares I have been having. It was suggested to me by a few of you to try this if possible when I asked for suggestions a week or so back. Thank you for the suggestion as I had totally forgotten about them.

I am certainly hoping that my having Fibro (dx 1989) & Sjogrens (dx 2003) will not stop me from being accepted into this study. I was dx with RSD in 2004

Does anyone have any suggestions in what I should &/or should not divulge to them? What I should emphasize or not? I wouldn't want to be distruthful (is that a word? LOL) with them, mostly just what not to emphasize to them I guess. Should I let them know about the new burning my body is dealing with? The surface burning that starts in my scalp & slides down over most of my body if I let it go & do not take any BT pain meds & extra Gabapentin. Could this be happening I wonder due to RSD turning into PN type pain totally? One of my PM docs thought that this might be what is going on with me now since having it so long & no real pain relief with LSB's. It started in my feet & is still in my feet 24/7.

Since we have to pay the 20% that Medicare doesn't pay getting this done for free would be wonderful for us. We live on 2 dsiability incomes thru SSD & a small amount from LTD insurance from the last job I held. I hadn't worked that much while my children were growing up & then I was in a car accident that put me on the disablity roles from '91 to '97, then back on them from '04 to present. Hubby has been on SSD since 1989.

Help Help.....???

Debby

Hi Debby
 

For the sake of your health I would just tell it like it is.
Especially in an experiment situation.....I recently learned the hard way that withholding ANY info to medical professionals can backfire bigtime.

I was getting a surgery procedure in my spine and needed dental work in the same timeframe. Being completely dentally illiterate, I 'assumed' the two professions were seperate entities and had nothing to do with the other.
I was in a hurry filling out the dental form and didn't 'bother' mentioning my surgery issue and ended up putting myself at a HUGE risk for systemic infection because I did not know how much bacteria our mouths harbor and having the dental work done introduced a plethera of bacteria into my bloodstream. BIG no no.

That's just my 2 cents....

Our other RSD friends who know more about the procedure you are talking about can give input/advice and suggestions...but i felt compelled to emphasize being completely open to ALL health pro's.......

Good Luck Debby
:Heart:

Rrae,
Thanks, but I had already decided to tell it like it is. I actually have nothing else but pain issues going on with me. I don't have high BP or high cholesterol, except my numbers are upside down.......the good is low & the bad is higher than it should be. The overall number isn't high. I am actually healthy as a darn horse except for having Fibromyalgia dx 1989, Sjogrens dx 2003, & RSD dx 2004. The only other meds I take is to flip the numbers around & that is working & an allergy medication.

Anyway I did call the number but the guy who takes care of this study is out of town for a week so he will call me next week or the week after to see if I qualify for the study.

I did have high BP until Nov '05 when I had back surgery, fusion from L2 to L4. My BP went back to normal & has been normal to a little low sometimes.

Take care............

Debby

Thanks for that Debby!
PLEASE keep this thread current - I SO hope they'll get you in and you'll get amazing results!
I'll be praying! You've had your share of pain......you need relief!

And I salute you as well! What you are doing is furthering the research to this battle we've grown to hate!

God Bless!
:hug: