How it all started....
 

Hello--my name is Tommie. In Sept. 1997 I had surgery on my right wrist to relieve the problems from a ganglion cyst. I was to be off work for 6 wks, was recouping fine, but 5 days before I was to return to work my rt. arm started swelling from the finger tips it advanced up my arm clear to the shoulder. I called my Dr. he asked if I could drive to see him, 15 miles away.
The pain was now severe, I could not bear to have anyone touch my hand.
I drove to my Dr. he had never seen this before, but, his partner had just been to a seminar in Cal.? and had heard about the symptoms and he said I had RSD. I was sent to the hospitol 60 miles away, 3 days later and treatment was begun: ganglion throat block to prove diagnosis, and pain meds. (The "golden med." Neurontin was being praised and I was put on it).
Physical therapy was terribly painful, but, it was ordered to try to get back the use of my now paralysed hand and arm. The workmans comp, was
involved so, every little treatment had to be run thru them, and there were constant changes in my med. delivery, and papers always to be filled out, and NO SYMPATHY!!! It was even suggested that this was in my head....
I told them it was not in my head, it only involved my arm. We ran the gauntlet, rushing to the hospitol whenever the dystrophy reared it's ugly head, or caused "flare-ups", for the ganglion throat blocks, then get the pain back under control, and fighting to hang on to my job. A few years ago, I started having similar pain and nerve "tingle-shots" in my right leg and in my left hand. I asked if it could be affecting the other limbs--the insur. co. reps. said of course not, but, a few other people said "yes, it can spread
to other parts of your body, although this is rare". Well, I'm here to tell you that I am one of the "rare ones". My meds have been increased thruout the past years, and I continue to work now (for my own company). If I need to sit down to rest for a few minutes, I do so. As long as I can keep the pain under control, I can perform. I have a loving family who has supported me thruout this whole ordeal, and I have a strong faith in God--Prayer has been
a lifeline. This RSD did not stop or go away or burn itself out as some Drs. said it would and I do not know how it will all end, but, I will celebrate my 10th Anniversary with my RSD, and meanwhile thank the Lord for His love and guidance, and pray that there are even better treatments out there for any other unsuspecting victim of this painful disease. I did not mean to write a book on this, but, I want to let others out there know that this ugly disease can be fought and hopefully they will have their moments "free of pain"-tommie.

Welcome to Neuro Talk Tommie...here is the link for the RSD forum

http://neurotalk.psychcentral.com/forumdisplay.php?f=21


You'll find great support there...and elsewhere around this place. :)

Hi Tommie and welcome to NeuroTalk. You've found a wonderful place to be. Alffe showed you the link to the RSD forum and it's quite active. It sounds to me like you will find a lot of support and be able to comfort others as well. I'm sorry for your pain and hope many better days are ahead for you.

Tommie
 

I'm fom the PNers group as well as Autoimmune group i just wanted
to say welcome to NeuroTalk there will be no 1 here who thinks your
pain is in your head. That's so sad you had to go through all of what
you.have. You've come to a good place,with kind people. Many Blessings
Sue

Hi, Tommie...
 

I'm very happy to meet you! Thank you soooo much for such a positive and heartfelt post! I agree that attitude is half the fight, and you sure seem to have a lot of good attitude. I hope you'll think about hanging around and becoming a part of our group here. I think you could do lots of good, and might find some support and make some friends in the process. Good luck and God bless you, Tommie...

Idealist

Hi Tommie,

I'm from the RSD forum - your story sounds SO familiar...come along and join us, you'll fit right in, there's a whole bunch of us with it all in our heads - and hands, feet, legs, arms, internal organs...you get the picture, lol!!

We've got a great mixture of people, from teenagers to oldies, some people just recently diagnosed, some have had it longer than you; we try to support each other, offer advice and listen when we just can't stand it any longer and need to vent.

And we try to make each other laugh as well! So come on in, settle down and make yourself at home, so glad you found us,

all the best :)

Hi Tommie and Welcome to NT!