Lisa, this is a beautiful, compassionate, letter. One that all of us, no matter how long we have had this bear. We look for the good in each day, look for way to encourage others, in turn, lifts our spirits up Thank you for the encouragement, your friend, loretta

I just want to thank everyone for taking the time yesterday to help me during a VERY bad day! I know with this disease there will be quite a few as I have had them before.

Yesterday was especially hard because I really had my hopes up about the peripheral nerve blocks being *my answer*, *my path to remission* and when that wasn't instant, I lost it!

Today, is a good day and I think the block has actually helped. My spasms are significantly less, my swelling is down and I don't see as much blotchiness. I still have the burning but maybe that will curtail some too.

THANKS AGAIN FOR BEING A GREAT GROUP OF SUPPORT, especially at a time when I truly felt hopeless!!

gatorsmomma -

So glad you are feeling better!

Are you doing coordinated PT with your blocks or otherwise mobilising the RSD affected areas as much as you can while the blocks take effect?

The reason I ask about coordinated PT is because as a general rule, a regimented aeries of blocks made up of a local anesthetic and maybe a steroid is most likely to make a long term difference,* if they are coordinated with as rigorous a PT program as you can handle, when you are feeling better. See, generally, Complex Regional Pain Syndrome: A Review of Evidence-supported Treatment Options, Hord ED, Oaklander AL, Curr Pain Headache Rep. 2003;7:188-196 at 192 FREE FULL TEXT @ http://www.rsds.org/2/library/articl..._oaklander.pdf

I say this because, eventually, blocks stop working on most people with CRPS-1: CRPS-2 may be a different question if there is ongoing local neuro-inflammation.

That said, enjoy the relief. And think of it as at least ataste of a permanent cure.

Mike


* This is as opposed to the "blocks with Botox, Infliximab (Remicaide), etc." referred to in my last post, which, when given in small trials to patients with acute (fresh) cases of CRPS appear to be largely successful in putting the CRPS into long term remission. See, Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1, Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M Int Anesth Res Soc. 2007;105(4):1148-1151 FREE FULL TEXT @ http://www.rsds.org/2/library/articl...teck_Rolke.pdf and Sympathetic block with botulinum toxin to treat complex regional pain syndrome, Carroll I, Clark JD, Mackey S, Ann Neurol. 2009 Mar;65(3):348-51 FREE FULL TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...ihms140157.pdf (My earlier use of "etc" was unfortunately ambiguious.)

Thanks Mike

As for PT, I have used all the visits that my insurance will allow for the calendar year My therapy was awful due to at first not knowing what was wrong so we did ice etc. (which I am not sure if it's possible but I swear it made it worse) then, with no relief from the SGblocks I really couldn't get past the one pound weight etc. My OT was wonderful with me but it was so long before my Dx that we ran into issues.

The exercises I do at home now are;

I wear a weight on my wrist (it's 2 lbs) when I can tolerate it.

I bought a parafin wax bath and use it regularly, the heat feels great. I have a hard time with the intial sticking my hand into it but it's worth it most of the time.

I do ROM in the bath tring to make a fist and get my thumb to reach the area near my pinky. A work in progress.

I can touch my index finger to my thumb but can't sqeeze things between them.

I can not grip much at all, last grip strength test resulted in none for first attempt and then a little on the second.

My OT was very worried when my insurance wouldn't approve more visits so she went above and beyond to give me information on exercises etc to do at home.

Good for you! Hang in there.

Gators, Lisa - haven't forgot either of you - proc yesterday went BAD. Uncovered something test wasn't 4. Need to save what little hand use left to write my own ?/find place to post (long post I just put up on another thread was started days ago).

Gllad to read some symptoms still exist (sounds weird), they mean you are still in beginning stages. Can you start a log, every day, asap? Note everything, even briefly (redness, pain level, sweat amount, swelling, itching, activity when noticed, including touching something or if only a certain body part is involved, like a specific finger/toe). Even if just one is happening (should be at least 2 things, always - symptom & activity, or date & that nothing happened or same as prev day - mark other categories 'none' n/a as approp). I developed a shorthand notation to make it easier. When you find your personal medical RSD nut, they'll be amazed and love you!

A bit of harder news. Some PT things will simply have to continue, power your way through, plainly put - endure . 4 me, it was child's wire & bead toy - bet that's a surprise

Hang in there - back with more when test damage subsides more. Katie