Hi SnowWhyte,

Have you joined the RSDSA yet? New members received information which includes a great info packet for spouses and other family members. I know it really helped my husband understand some of what I was experiencing. Check out their website at rsdsa.org.

They also have a great medical archives area where you can research treatments and meds. In addition, there is a feature that allows you to search for board certified pain management doc and anesthiologists by geographical area. Support groups are also listed.

The best of luck to you. I am so sorry that your RSD is intensifying so rapidly. Try to find the very best RSD doctor that you can. Many times, board certified docs that practice pain management out of large, reputable university medical centers or research hospitals are your best bet - call and see if there is anyone experienced with RSD. Or ask them for a reference. In some areas a good neurologist is a better choice.

Take care, XOXOX Sandy

As I try to start all my 'reply' posts with: thank you all for your helpful comments, and kind words, they provide me with more hope and encouragement than I could ever express.

Sandy,

I'd like to specifically thank you for letting me know about joining RSDSA. I've heard about them, and actually spent quite a bit of time on their website, but oddly enough, never thought to look into the "join RSDSA" portion of the site, I don't know what I was thinking! All of the points you make are what I need- I've been given much in-depth help as to finding a good doctor, but I've been really at a loss, and struggling painfully with trying to deal with explaining this "beast" to my friends and family...to the point where I haven't even told my sister yet- she has actually shunned me, for thinking this "news" I've been trying to talk to her about is just some "dramatic" episode...and it's breaking my heart not having her to talk to for support. because I know that if I try to tell her, it will only make it worse, b/c at this point, it won't sound like anything serious- to her, it will only reinforce her idea that I'm overreacting, or making a scene/being "dramatic", etc, etc... I've been searching so hard at no avail for SOMETHING that explains RSD/CRPS in a way that actually makes it sound the way it feels- sound the way it legitimately is. Even the (more current) name itself "complex regional 'pain' syndrome" has some undertones that spur judgement by some people- that it's like a headache that you're just too weak to deal with, or want to whine about, or looking for drugs for, etc (when it comes to pain, you name it, they have ways to judge you for it), but if you told someone you were dx with another incurable illness- cancer, for example, people would never dream of judging you ... idk if anyone else has experienced this...but it infuriates and deeply saddens me.

Anyway, I'm going to jump on RSDSA's site in the morning- thanks again for the tip!!!

~Colleen

Dear Colleen -

Just saw your note to Sandy. You are a beautiful and gifted writer. To the point that the description of your circumstance is terrifyingly immediate.

That said, perhaps the most direct way to describe where CRPS falls out on the spectrum is to repeat what Jim Broatch (who runs the show) used to have almost on the RSDSA masthead: Most of our endowment is from memorials. I've also read from a number of sources that the pain can be worse than that of metastasized cancer. Maybe that's a little too direct. . . .



Mike

Mike,

I'm shocked and humbled to hear such kind remarks about my writing. I've always managed to write decently I suppose, but it was always forced, and never "beautiful" by any stretch of the imagination. Until recently, writing has been extremely difficult for me, and I still struggle with just letting it "flow". But as unfortunate as the subject matter is, and I wish it didn't need to be written about to begin with, your praise has made my day (and you know better than most how tough a job that is). Thank you so very much friend!

p.s. again, my new focus in all this RSD/CRPS "nonsense" is to find a silver lining wherever I can- and it's actually quite exciting when I do-try it! (the child in me comes full-force, it's really a mood-booster). Silver lining found today? I've realized in the face of everything that has been going on, writing has become not only much easier, but extremely cathartic. And the fact that others' may enjoy reading my little bits of "work", is beyond thrilling!