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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Old 06-21-2013, 02:42 PM #1
mamabear57 mamabear57 is offline
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Angry Painful foot from post great toe fusion!

So glad to find this forum! I am so discouraged right now all I can do is cry! In March of 2011 I had hallus rigidus of my lt great toe. It was so bad that I had to have a toe fusion. I had injured my toe with a pressure washer several yrs prior. After my toe fusion I had two screws removed 01/2012. I had to do this because the head of one screw was so close to my skin you could feel it with a finger. Both scres were removed with teriible difficulty! I have suffered from this since. I went back to the podiatrist/surgeon twice since the removal because my foot stayed so swollen and blue at the incision site as well as the base of my toes!(They are also terribly numb) I was told it was just gonna take time! This past Tuesday I had ankle pain so bad (like a bad sprain) I could not even walk! The pain (burning pain) started radiating up my calf several weeks ago! I made an appt to see a Orthopedic surgeon and saw him today. X rays were made before I actually saw him. I had swelling on top of my foot with bluish color at base of my toes and at incsion site. He told me that the x rays were perfectly normal and the reason my ankle hurt was because of the gait that I had. All I needed was some good compression socks and good shoes and it would resolve itself. I ask him about the swelling and discoloration and he had no response but did ask if I had diabetic neuropathy (which I am not diabetic). He sent me home with a ankle brace and no intentions of doing an MRI or bone study! I am so discouraged and feel I am going crazy! I am a RN at a dialysis unit and I have insurance. I was so talked down to and treated like it didn't matter all the pain and suffering that I had endured. Just makes me mad!
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Old 06-21-2013, 06:42 PM #2
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I'm so sorry to hear of your bad experience! There are lots of good people out there in the medical field, but unfortunately there are lots of twits, too! Keep at it and find some good docs, and best of luck! Pain really stinks
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Old 06-22-2013, 04:39 AM #3
birchlake birchlake is offline
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Mamabear, my CRPS developed after a fusion of the front interphalangeal joint in my big toe.

We can't say with certainty that you have CRPS. But what you absolutely must do is get more opinions. This condition is widely misunderstood, even by most doctors. If it is CRPS, the faster you treat it as such, the better off you will be.

You could try a pain management doctor (anesthesologists generally) or another podiatrist, but get multiple opinions. Don't be afraid to ask the doctor point blank how many patients they have treated with CRPS. It took me a half a dozen doctors before I finally received my diagnosis. Some of the doctors had heard of CRPS, but never treated it. One doctor had only seen 2 cases in 26 years.

Please get more opinions and keep us up to date!
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Old 06-22-2013, 06:41 AM #4
Ccm47 Ccm47 is offline
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Sorry you have been in pain, but welcome. I saw two podiatrists and several docs at my family practice who missed my diagnosis before seeing an orthopedist who suspected RSD. He sent me to the pain doc. The pain doctor figured it out and started my treatment. He also had me see a vascular doc and a neurologist to rule out other problems. Then i switched pain docs because the first one wasn't considering all the treatment options. I guess what I am saying is that you definitely need to see someone who already has experience with RSD, and even after that you may need to look around to find someone you are comfortable with, if your insurance/health care system will allow you too. Don't give up or settle for someone who doesn't respect you.
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