Re: RE: TO ALL MEMBERS......

[Guest guest]

Amey - I agree with a good portion of what you wrote except that for a lot of folks the blocks can and does reverse the RSD if given early enough. Even the Neurontin has been been very helpful for many folks. It's a struggle. So many are desperate to feel better and it's hard to know what will "click" for someone.....and sometimes things do click....even if only to make the person more comfortable. Interestingly, even some of the things that you've listed as things that work don't actually work for some folks. I guess that's why folks keep trying. You just never know what will work for you as a unique individiual. barbaraamey73 wrote:

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))

[Guest guest]

AMEY--I AGREE WITH YOU TOO. I'VE SEEN A LOT OF DIFFERENT PROCEDURES THAT WERE COSTLY , SOUNDED VERY DANGEROUS AND JUST DIDN'T SEEM IN THE BEST INTEREST OF THE RSD PATIENT...I'VE BEEN THROUGH A LOT OF THE THERAPIES AND THEY WERE CRAAAAAAAZY. AND WHEN ALL THAT MEDICATION WORE OFF MY BODY FELT LIKE A TRAIN HIT IT.EVENTUALLY AFTER A LOT OF HEARTBREAK AND DISSAPOINTMENT, I JUST STOPPED ALL OF THE THERAPY STUFF. MY FRIENDS USED TO TELL ME I LOOKED WORSE AFTER THERAPY THAN BEFORE THERAPY. ITS ALL AN INDIDVIDUAL DECISION BUT EVERYONE PLEEEEEASE CONSIDER THE AFTER-EFFECTS OF THESE PROCEDURES.THIS IS JUST MY OPINION TOO AND I DON'T MEAN TO COME OFF AS NEGATIVE BUT JUST TRYING TO GET YOU TO SEE, JUST LIKE AMEY, THAT ALL THESE 'FIXES' AREN'T ALWAYS 'FIXES'...TANYABARBARA TORREY

wrote:

Amey - I agree with a good portion of what you wrote except that for a lot of folks the blocks can and does reverse the RSD if given early enough. Even the Neurontin has been been very helpful for many folks. It's a struggle. So many are desperate to feel better and it's hard to know what will "click" for someone.....and sometimes things do click....even if only to make the person more comfortable. Interestingly, even some of the things that you've listed as things that work don't actually work for some folks. I guess that's why folks keep trying. You just never know what will work for you as a unique individiual. barbaraamey73 wrote: 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))

[Guest guest]

Hi Amey,

I don't understand how you can say Neurontin is not for RSD. Everyone knows that all people with RSD react differently to different drugs. For me Neurontin was a life saver. Even though it has proven to have very serious side affects for me I would not give up taking it as my quality of life really plunges when I don't take. You may speak for yourself when it comes to certain medications but I have a very good and trusted pain management doctor and will believe him first.

Felice