reply to strd27? no name given

[Guest guest]

Dear strd27 ( no name given): there is always a chance of remission but if it

happens to you please announce it because you will be the first I have met. I am

sorry for your pain and whats ahead for you. I can only speak from my personal

experience and you seem to be on all the same med's I was on 9 years ago when

this all started for me... I felt like hell on the neurontin and the serzone

made me quite foggy. I finally decided the side affects from the meds just made

my days worse than if I just took pain meds. and at least didn't feel like a

zombie from all the other stuff ( the pain meds. make me feel good...yes I'm

addicted because they make life tolerable. I would rather be addicted than in

more pain. The word addicted has many different definitions, I don't rob houses

to get pain meds. :>} I guess you have to try what the doc's are suggesting for

you right now because you have no choice. I hope you know what your doc's

experience and knowledge with RSD is, thats the key. I had all the blocks and

pokes and prods too in the beginning and then found out the doc I was seeing

wasn't really all that farmiliar with the disease, he just treated everybodies

chronic pain the same (neurontin and blocks). I finally found my angel, an

Anesthesiologist that had just completed studying with an RSD specialist in

Georgia. Without taking you on a roller coaster ride of my last 9 years I'll

skip to the present: I have RSD in both feet and legs. All started with a pulled

arch in ONE foot (plantar fasciitis spelling?) after several surgeries Tarsal

Tunnel set in...more surgeries (by this time it was both feet) I was quite heavy

325 lbs. and growing. I was on every pain med they made and trying to work. For

some reason my bosses didn't care for me to nod out at my computer. I was the

bread winner and couldn't continue this cycle. So I have now got a spinal cord

stimulator and a morphine pump implanted, I still get some pain meds. for the

bad times. I LOVE the pump and highly recommend it if you want to live life

without being in a fog of narcotics (the morphine goes in my spine and pretty

much eliminates the high from oral drugs). The stimulator only helps with the

burning/not the pain. I think this combo for me is as good as it is going to

get. My RSD is progressing, feet look like someone filled them up with air and

painted them red, and I can actually watch it grow up my leg by the shiney skin

and loss of hair. I had to quit working and was approved for Social Security

Disability in a record time of 6 weeks ( the caseworker said it went so fast

because I did all their work for them...I sent them a book on me with every test

and every doctors file neatly bound and divided up by its revelence to my case.

Also wrote a letter for the first page stating how my disease affected EVERY

life function; from sleeping to trying to remember things, all the way down to

problems performing personal hygiene, I mean everything!

I hope you are NOT still trying to do your type of work, if so...you will pay

for it dearly. If you are like me, I had no choice...but there are ways to get

to a place so that you can stay home and care for yourself...you may have to

live a lifestyle that you never dreamed you would live, ie. low income housing,

using food banks etc. but my point is...you MUST take care of your injury or you

will end up with a claw for a hand and wish you had done things different early

on. Sorry, I am really on a soap box aren't I? It affects me deeply when I hear

someone that is in the early stages of dealing with this that I guess I want to

try to help you skip all the bull in the middle and just get you to where you

should be....and that is: at home caring for your disease, spending every waking

minute working on keeping one step ahead of it.

Right now you probably think I'm a little dramatic, but I would like to direct

you to some sites that will give you an idea of how vicious this disease is:

similar situation to yours: http://maxpages.com/mitchsrsd

Photos: www.rsds.org then go to clinical procedures and then photo gallery.

Dr. Hooshmand: www.rsdrx.com

Best wishes to you!

in Alaska