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 08-14-2007, 12:13 AM #1
dillypooh dillypooh is offline
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Default Rsd

I am new and I have been reading this with much interest. A few months and about 4 doctors ago I was diagnosed with RSD and I still dont beilieve that is what I have. After looking at some pictures my feet or legs look nothing like that. There is no discoloration at all. The only thing wrong is in the pit of my foot hurts so badly I had to quit work because I could no longer stand on it and my second toe sticks up and wont go down and it seems to want to double under. Anyone have any types of comments for me. After 8 months I am pulling my hair out. I am now taking sympathetic nerve blocks.
Thanks
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Old 08-14-2007, 08:52 AM #2
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Default Hi Dillypooh,

Welcome to the group. You will get some good help here and learn a lot about RSD.

My RSD started out from TOS surgery on my right side so it started in my right arm and hand. My hand was swollen and mottled and the pain was devastating. It really makes a person want to cut off the limb that's effected. I had 3 blocks that helped with the swelling and the pain. At times it starts back up when I use my arm wrong or overdo.

I have it in my right foot also and my middle toe is deformed from it. I also have an Neuroma in my foot so I suspect that that's what started it in my right foot. We talked about surgery to remove the growth but with RSD it's possible surgery could make it worse so right now I have shots when I need them.

Hopefully the blocks will help do what they did for me. They don't always work for everyone but if they do that will be good for you.

The blocks are also used to diagnose RSD so they will use that to let them know if you have it. I have never had a block done from the waist down. Mine was SGB in my neck area.

Hopefully it won't be RSD but if it is you have found a good place to learn about it and make good friends.

Ada
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Old 08-14-2007, 09:02 AM #3
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Hi There And Welcome,
I Also Had A Neuroma, Pre Rsd, And Had Injections That Did Not Work, And Then Had The Surgery Whic Stopped The Pain But Left The Toes Numb, Which Was Fine With Me. Your Pain Sound Much More Like That. I Am Surprised To Hear That With That One Symptom You Were Diagnosed With Rsd ... Maybe It Is Time For One More Doctor. Are You Seeing Ortho Or Neuro Docs?
Joan
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Old 08-14-2007, 09:48 AM #4
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Hi Dillypooh,
Welcome to the group. You have come to the right place.You will find alot of help from the best people I have ever met. You will also find so much comfort. I feel better every time I come on here.

Sue K.
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Old 08-14-2007, 11:06 AM #5
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Thanks guys for the replies. Yes I have seen an ortho and neurologist.
It started off with a bone scan stating stress fracture and RSD. Everyone but my neurologist says it is RSD. I dont know what to do because I have been to soooo many doctors. Thanks again.
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Old 08-14-2007, 12:59 PM #6
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Quote:
Originally Posted by dillypooh View Post
I am new and I have been reading this with much interest. A few months and about 4 doctors ago I was diagnosed with RSD and I still dont beilieve that is what I have. After looking at some pictures my feet or legs look nothing like that. There is no discoloration at all. The only thing wrong is in the pit of my foot hurts so badly I had to quit work because I could no longer stand on it and my second toe sticks up and wont go down and it seems to want to double under. Anyone have any types of comments for me. After 8 months I am pulling my hair out. I am now taking sympathetic nerve blocks.
Thanks
Hi and welcome Dillypooh! Ok, you mentioned 4 doctors?? Did all 4 diagnoise you rith RSD? You said also that you still don't believe that is what you have?? I too went to several doc's who DX me with RSD and I was in denial. Is the foot cold? Have you injued your foot?? surgery? Now, last but not least.. are those sympathetic blocks helping?? Love, Desi
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Old 08-14-2007, 04:13 PM #7
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Default Everyone is not the same...

Dillypooh,

Sorry that you may have RSD, but welcome to a great place to be if you do!

Just because you don't have discoloration does not rule out the possibility of RSD. My feet look normal colorwise yet I can't stand for air to blow on them. The air from a fan will literally send me scurrying for cover. They ache deep within and burn. Cold makes them hurt, heat makes them hurt, standing/walking on them makes them hurt, etc., etc. Sometimes when I have shoes on my feet sweat like I'm standing in a sauna. Other times I have a sudden striking pain like someone just pounded a hot metal poker through one of my feet. Go figure, huh? My point is that symptoms vary from one person to the next, but pain is a common thread.

I've communicated with several people who cannot even stand for socks or shoes to touch their feet, much less be on their feet. So you can see that there are many variations to this monster. Time will tell.

Take care of yourself,

EJ
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Old 08-14-2007, 06:10 PM #8
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I second what EJ said. I started with a deep "bone crushing pain," which was initially allieviated only by untrasound in PT sessions. A couple of months later, I developed intense sensitivity to compression. However, I didn't have my first color change until something like three years later!

Fear not, however, the easiest way (I was told) to establish a diagnosis was to see if I responded to series of sypmathetic nerve blocks, and because I received them within roughly 4 months of the advent of my symptoms, I did! No, it didn't cure me, but I had a pretty good diagnosis, one which was borne out with subtler physiological changes over time, e.g., nail and hair growth. (Of course, some 9 months into my symptoms, a peripheral neurologist at the Mayo Clinic in Rochester MN declared that I didn't have RSD; I just didn't know that she was in the midst of publishing a study of the "Incidence of RSD in Olmsted Co., Minn.," and was therefore heavily into the "objective" symptomatology of the disease.)

So be well. There are many paths to the alliviation of the suffering we call RSD. If that in fact is what it is.

Mike
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Old 08-14-2007, 08:37 PM #9
dillypooh dillypooh is offline
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You guys are great and have made me feel so welcome.
Yes my foot freezes always.
Sometimes when I stand it does feel like my foot is soaking wet from sweat,
I cannot let my other foot at night touch the middle of my right foot....too painful.
My entire foot expecially my 2nd toe swells pretty badly.
My 2nd toe will not touch the floor it pokes upward.
I have no discoloration at all.
My first lumbar injection worked some for about 3 weeks and
in 2 weeks I will take my second one.
Oh and no I have never had an injury in my foot
I had cervical surgery and that is all.
God Bless
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Old 08-14-2007, 09:00 PM #10
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Ahhh, Now With These Latest Bits Of Info You Sound More Like One Of Us ... I Hope Not, But If So, You Are With A Heck Of A Nice Crowd!!! Joan
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