To All Members Amey

[Guest guest]

Amey

I agree with you on some parts, but the biggest thing with RSD or any chronic condition---you should not give up hope. Someday, hopefully in our lifetime, there will be a cure.

Treatments that help some don't help others.

I've had blocks that helped some, and they at least gave my body a break from the relentless pain.

I'm on Neurontin. When we decrease it, the burning is much worse, so I know it's doing something to help.

There are many research studies for drugs to treat rsd that are going on. I'm included in one (beginning level), and hopefully Barb will be in the next higher round.

The biggest thing is you need a knowledgeable doc who cares and is willing to treat you as an individual in pain.

In a message dated 12/7/2004 6:38:56 PM Eastern Standard Time, RSD-CRPSofAmerica writes:

Subject: RE: TO ALL MEMBERS......HELLO EVERYONE, ITS AMEY. I KNOW I DONT POST ALOT. I USUALLY JUST ANSWER QUESTIONS IN A PERSONAL MATTER. BUT,,, THIS I COULD NOT HOLD BACK ANY LONGER...I WISH SOME PEOPLE WOULD PLEASE "STOP" CHASING FOR A CURE!! THERE IS "NONE"! GET IT THRU YOUR HEAD!! I AM NOT BEING MEAN I AM SIMPLY TELLING YOU THE TRUTH. AND I BELEIVE IN BEING HONEST.. I ALWAYS HAVE... HONESTY IS THE BEST POLICY..I AM HAVING A HARD TIME WITH SOME PEOPLE HAVING 6 AND 10 BLOCKS A WEEK AND THESE STUPID TESTS THAT COST THOUSANDS OF DOLLARS THAT DO NOTHING BUT MAKE YOUR DR'S AND HOSPITALS RICHER!! THERES NO POINT!! THERE ARE A FEW SIMPLE THINGS THAT HELP WITH RSD AND THATS IT!! AND "NEUROTTIN IS "NOT" FOR RSD"!!!1. NEUROPATHIC PAIN DRUGS ie. topamax, effexor2. SPINAL CORD STIMULATORS ans 3. BREAK THRU CANCER MEDS (WHICH ALL RSD'ERS NEED)4. PAIN MEDICATIONS ie. VICODIN, DAVOCET, ECT.5. A DOCTOR THAT KNOWS WHAT THE HELL HES TALKING ABOUT!!GIVE IT UP! THERE IS NOOOO CURE AND THESE DRS ARE TAKING ADVANTGE OF OUR "NOT SO" KNOWLEDGABLE FACTS ON RSD... THE MORE YOU DO THESE THINGS TO YOUR BODIES THE MORE YOU ARE SPREADING IT AND MAKING IT WORSE!! ITS MORE STRESS ON THE BODY WHICH MEANS SPREADING OF THE DISEASE AND IN MORE PAIN!! I WISH YOU WOULD PLEASE REALISE THIS... THE ONLY THINGS THAT ARE OUT THERE ARE THINGS TO KEEP US COMFY. IM SORRY, IM NOT BEING MEAN IM JUST SAYING UPFRONT WHAT IS WHAT... I HATE TO SEE PEOPLE SUFFER NEEDLESSLY. AND DO ALL THESE STUPID TESTS AND PROCEDURES THAT DONT TELL THESE DRS ANYTHING MORE THAN WHAT THEY ALREADY KNOW. ANY "REAL" RSD DR THAT KNOWS WHAT IT IS JUST HAS TO TAKE ONE LOOK AT YOU AND KNOW IF YOU HAVE IT OR NOT! NOT BLOCK AFTER BLOCK AND THERMOGRAPHS (SERIOUS JOKE TEST), HYPERBERIC CHAMBERS, AND SUCH. ITS ALL CRAP AND ONLY A TEMPORARY FIX NOT FOR THE LONG HALL... WHEN IT WEARS OFF WHERE ARE YOU THEN???? BACK TO WHERE YOU WERE IN THE 1ST PLACE AND ACTUALLY WORSE! AND THEN YOU FEEL EVEN WORSE MENTALLY BECAUSE YOUR THINKING "IT DIDNT WORK WHAT AM I GOING TO DOOOO???" YOU DONT NEED THAT! WELL, I HOPE EVERYBODY IS OK AND IM NOT POINTING ANY FINGERS JUST EXPRESSING MY OPINION... IGNORE ME IF YA WANT DELETE ME IF YA WANT BECAUSE I REALLY DONT CARE. BUT WHAT I "DO" CARE ABOUT IS EVERYONE IN HERE... WE NEED EACH OTHERS SUPPORT ON WATEVER WE ALL DO!!!! ISNT THAT WHAT THIS ROOM IS FOR IN THE 1ST PLACE??? I THINK YOU ALL FORGOT THAT... NEVER FORGET THAT 1ST PERSON YOU TALKED TO THAT HELPED YOU THRU THAT FIRST FLARE UP YOU HAD FOR DAYS STRAITE..... TAKE CARE GUYS,,, AND GENTLE HUGS,,, AMEY ((THE RAMBLER))