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Old 04-11-2013, 10:47 PM
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Djhasty Djhasty is offline
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Join Date: Nov 2012
Location: Omaha Nebraska
Posts: 142
10 yr Member
Djhasty Djhasty is offline
Member
Djhasty's Avatar
 
Join Date: Nov 2012
Location: Omaha Nebraska
Posts: 142
10 yr Member
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Painman
Sorry for your terrible pain today. Just wanted to let you know I can relate. This syndrome is so frustrating. Not only for the horrible pain but for the limitations it brings. I understand your humiliation and embarrassment, though I will tell you that you needn't be either. I believe most people are understanding. Although I too am often humiliated and embarrassed by the disease and the attention it brings. For me it is the beach. I miss walking on the beach and playing in the sand, especially now that I have my Grandchildren. I miss the beach more than anyone will ever know. My thoughts are with you today. I am hoping for better days ahead for you.

Quote:
Originally Posted by painman2009 View Post
so today I went to spine specialist, normal pain levels ..around 8 and a half to 9 .. during exam it was going as usual, until she asked me to lean forward. mind you it didnt happen quite immediately but it was to quick for me to adjust.
when I bent over I lost balance a little and had to use the front part of my foot.( i never use it because it is the worst and primary area of RSD) electricity hit so I stood up, as I was going back to my chair is when it happened, the pain chattered me. from the toes to my groin to my hands and back through my other leg landing in my foot. so quick so bad I couldnt control my self. tears ,then full on cry. It was humiliating. I usually do pretty good at controlling these things, even when I dont it will build up so I can find solace first. for almost two hours it took for me to gain control. and the pain is still rattling on now but ive regained control. Now im not the one who was brought up as boys dont cry, I still grew up learning to control myself as to not make others uncomfortable . I need a cane which took time to get adjusted as far as embarassment goes, then a walker which I still cant use with out feeling embarrassed, as well as the scooters in stores. Im not used to not having control over my body, (still) its a hard hit, and today I felt my weakest since the start of this madness, then topping all this off Im having issues getting another 3 phase bonescan done (no one is doing them) and comp just said(finally) that I can see a pain shrink again. Ive only been waiting years for that.... Icant even get to sleep to escape this crap in a dream that I probably wouldt remember. My life on my couch or chair despite the fact that I push myself to extremes, im still no where as active as I used to be, missed events because of the walking I would need to do, like hershy park or disney, they all went and I stayed home, parties , because I stay home because the music vibrations cause too much pain, carnivals(music and walking) the beach, the waves, the rocks and sand. even gardening stolen away,
If some-one tells you RSD isnt real share all of our stories so it can help people see just how real it is
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Djhasty
- CRPS Type II with migraine, Dystonia and spasticity
- Diagnosis 2010 following
- Injury 2004 L5S1; 2nd metatarsal left foot fracture; left hip fracture
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