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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#1 | ||
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Junior Member
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First, I just want to say to all those suffering from this monster (whether patient or family/friend support) your endurance, strength, and knowledge is amazing. I have spent a long time reading your stories looking for hope and I have ended up feeling more confused and scared than ever. Please don't take that the wrong way, I will do my best to explain what I mean and I can only pray someone out there can help.
I was diagnosed with RSD 7 months ago. I am (was) a package car driver for UPS and I am used to working in pain. Understand, I am not boasting, I am stubborn and proud. At the time I went to the ER I weighed 104lbs.(5'1) the pain became too much to bare and proving I could do the job like any of "the guys" was becoming a childish state of mind I needed to get over. I spent 4 hours in the ER to find out I had fractured my left foot. First they asked me if I ever fractured my foot before...Not that I was aware of...then they told me I fractured the sesamoid bone in the bottom of my foot and the discoloration, swelling and burning sensation was a result of the fracture. I have a healed fractured as well, though they did not tell me where in my foot that was. My podiatrist suggested RSD...XRAY,MRI,BONE SCAN, later I went a neurologist who performed an EMG. Found nerve damage and diagnosed me with CRPS II. Question 1: Is having such traumatic injuries and not knowing it a symptom of RSD? I won't go into all the ridiculous medical details of the last 7 months, I am sure most of you have been there and done that. My pain is like an electrical storm or being attacked by mosquitos. It has gone from my left foot to both legs and arms. My neurologist put me on Topamax, Tramadol, and Percocets and that I could go back to work when "I" feel better. Anytime I can't get out of bed for a day she has said I did it to myself and pushed myself too much. Question 2: Is she right, am I hurting myself more by doing housework or working on the cars? I am feeling weaker and so stiff, like I'm stuck in cement all the time and sleep is hard to come by, I fight this by forcing myself to get up and walk through the pain or do something around the house. I don't know what else I'm supposed to do. As I explained in the beginning, I am not one to sit, I solve the problems....I fix the leaky sink...I change the oil in the car...hell, I even put a roof on our house because we couldn't afford a roofer. For the first time in a long time I am faced with a problem I don't know how to fix. Question 3: Is this stiffness another symptom or a byproduct of my behavior? To anyone who takes the time to read this...I apologize for the length and appreciate your consideration. I am starving for answers and would be grateful for any information. Thank you. Darcy |
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#2 | |||
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Member
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Darcy,
Welcome. I am fairly new to this site and have had the monster for coming up on 2 years. I also have Crps 2. I feel and had over 4 fractures in my right ankle. I will try and answer your question to the best of my ability. Stiffness is part of the disease for some. Everyone has a little different story so your body's reaction vs. mine or someone else's maybe different. There are times that I feel like there are bumble bees attacking my foot, there are times (most) that I have burning on top, while the bottom, and recently the calf is ice cold. When the coldness started it felt like running ice water down my leg. But when I felt it, it was warm. Sleep is hard to come by and I find I take naps now on occassion. As well as I can't a blanket on my foot. Feels like a cement block. My feeling behind you working and housework, is strictly that, my feeling. DO AS MUCH AS YOU ARE ABLE. Just make sure you have taken your medication long enough so that you know your reaction. OH yeah you will also be a walking barometer. You will know when the rain is coming, the snow, a drop of 10 degrees. I am not sure if that is a 2 thing or we all get it. Have you had any blocks done? Anita |
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#3 | |||
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Member
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Welcome Darcy,
By now you know you're not alone anyway. This monster effects us all much in the same way but yet we do differ in other ways. The sucky thing is that it don't go away. Some of us have remissions but it usually returns. The good news is meds. At least we can treat and ease the pain. Very sorry to hear about your situation but here you can vent, learn, share and hell even scream and we'll listen...
__________________
Hope for better days..... Russ okska'sssini ómahkapi'si . |
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#4 | ||
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Junior Member
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Okay you said i could vent....there it is. Thanks, Darcy |
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#5 | |||
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Member
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Darcy,
There are lots of good doctors. Check out RSDSA or american rsd, they list some. I am not sure of your area, but in my searches there are places in Philadelphia. Yes, we get mad, sad, at times I am just furious as ????. I just keep believing GOD has a bigger plan for me. I am learning to be humble. Anita |
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#6 | |||
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Member
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Darcy,
I know the feeling. I used to drive my own semi cross country and now my activity is almost none. I lost my truck, my job and physical abilities. You're right. This sucks. All we can do is except it for what it is and go forward. Do as much as possible to feel good about waking up. Like the analogy of life being like riding a bicycle. Keep moving and you won't fall over....
__________________
Hope for better days..... Russ okska'sssini ómahkapi'si . |
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#7 | ||
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Junior Member
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Quote:
Philly is next on my list....have to get over this speed bump with disabilty then i will channel my anger for more useful purposes. Unfortunately...too angry for the bigger plan part yet....but thank you for trying to get me there sooner. Darcy |
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#8 | ||
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Junior Member
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Quote:
Darcy |
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