New guy with RSD
 

Hello . I am new here and have been battling RSD in the foot/ankle for 4 years now . Been some lonely times through it all for sure since most cannot understand it .

I like many others got this from a simple surgical procedure .

Anyway , it's good to see a site like this . Before now , Google was my only source of information and communicating with Google ... don't work so well , falls on deaf ears :)

welcome to our little family..........
 

i too have rsd in my right ankle.........however, i am at a tolerable stage ...thank goodness.......
my husband is also an rsder, and his pain is unbearable.........
so give us your story, and welcome............we are here for ya......

:welcome_sign: to NeuroTalk VW. you found a wonderful group here.

anything i can do to help you navigate around...just let me know. :D
Curious

Thanks for the reply . Story huh ? Well then ,

First of all the hellacious times are over . Yep it hurts , has altered all my prior activities and prognosis is I'll always have it but I'm alive and lost the battle but won the war . After I had learned all about it I had given myself 12 months to get even a tiny bit better or I was going to end it by cleaning a shotgun with the barrel aimed at the ankle . Hence , I won the war .

After the 2003 surgery as a few days went by the pain got worse . Foot sweating big time . I mean almost would dehydrate a person it was that bad . The doctor was very vague , probably afraid of a suit . After aprox 8 weeks I finaly was able to see a pain intervention specialist . Thanks Federal Work Comp for such timely authorization :mad: I then was sent for a bone scan and recieved the diagnosis . Went in for the first of 6 of those pain shots/blocks . First one let me have great relief for maybe 30 minutes . The 5 after really did not help and I have not had another to this day .

It has been quite the emotional ride . It was really bad the first year with all that goes with it . I could count twenty seven different pains going on at the same time , in the foot that is and I slept for only 15 minutes or so at a time , 5 times in a 24 hour period for around 4 months . Having tachcardia all my life , well that sleep loss wreaked havoc with it .

I went to therapy 5 days a week for a month . Worthless time spent although they did teach me something I used later . I would not look at my foot . It scared me to or something . Once though I looked and it along with my calf had lost much of it's mass and I said just no way am I going to let this happen . I took my pain killers and worked it out several times per day and ate food like a weight lifter trying to build muscle . It worked ! I got the mass back and maybe 1/2 the strength but my cholesterol shot up to 310 . Whooa there what a problem . Cannot excersise the amount needed to wear off the weight gain and high cholesterol numbers so ..... I'm in limbo of sorts and taking meds to reduce it .

I have gone through it all and even experienced the mental horrors that come with it but I need to say to anyone that is reading this and struggling with RSD .

Hang tough and do physical type things to try to at very least not let it eventually cause total loss of limb . RSD won't kill us and of all the more severe conditions and diseases a body can get I am thankfull my lifes journey has only included RSD to this point . It coulda been much worse . RSD is tough to manage but the human mind can overcome the most of it as time goes by , the RSD eases up a bit " in which it will " and we learn to deal with it in our way since everyone is a bit different in circumstance .

I love life and my time thats left on this earth is very valuable to me . More so it seems than before RSD .

I forgot to say that through this I have learned a new term .

White Coat Fever . Yep , doctors scare me these days .

Hi VWB!

So glad you found us...yes, it is a very good thing to be able to share experiences, thank you for your story. White Coat Fever, hahaha :D But you made a very good point about why doc are so vague at the beginning, scared of a suit, bet that's right. Which, if it's true that RSD can be halted by early treatment, just compounds the problem. Catch 22...

Anyway, this forum is a zillion times better than just googling - some of those medical descriptions of RSD scare the pants off you...at least talking to people who actually have it makes you realize there is Life after RSD, well, kind of...

I've been lucky. I have it in my left hand and wrist (following a colles fracture) and so far it hasn't spread, though I have RSI in my dominant right hand, causing more probs; never got the muscle back in my left hand though, despite lots of PT. But I have to use it quite a bit; painful, but I believe for me it's kept the progress kind of on a level plane..I do think there's something in the "use it or lose it" theory.

Oh yes! I used to have a 1600 VW beetle when I lived in the UK. Great little car, specially for the winter...

all the best :)

Howdy
 

Welcome aboard! :Wave-Hello:

You will like this place, everyone is family as far as im concerned. The best group of people anywhere, and they all know about RSD!

My RSD started from a doctor oops, and it was the right leg and foot. It has now spread to the whole right side of my body, and the left shoulder.

Man do I ever have a case of White Coat Fever! :yikes: