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quahog
Veteran Member


Date Joined Sep 2005
Total Posts : 535
   Posted 6/14/2008 9:25 PM (GMT -7)   
The reason I'm asking is I'm interesting in knowing what signs and symptoms you may personally have.

Do you have excessive sweating? Do you become severely hot out of the blue (Almost like a heat wave has hit you)

Do you have Raynaud's like symptoms (Hands, Feet, etc. turning blue or Grey and wax like in color)

Do you have for lack of a better term strange, weird creepy crawly like sensations all over your body? IE; If you touch you neck do you have pins and needles appear down you legs or some place else or a similar sensation.

Do you have a Peripheral Neuropathy?

Do you experience pain if you or someone else lightly touches your skin or if wind blows on you?

Do you have anxiety like symptoms?

Pain that can not be explained


I apologize if I am asking personal questions but I really would like to know if any of these symptoms are similar to what someone with diagnosed RSD may experience.


If anyone can help out, I sure would appreciate it.

Thanks

Post Edited (quahog) : 6/15/2008 11:26:16 AM (GMT-6)


pieceOfCRPS
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 6/15/2008 6:51 PM (GMT -7)   
Hi , i have crps type II, which is similar or the same. Mine is caused from an injury so my diagnosis is based on the severe nerve damage from the injury but my syptoms are the same.

Where should I begin. I have burning, shooting, aching, stinging. Swelling for no apparent reason and swelling when I walk. Swelling when I expose the foot to the sun. Red hot and swollen at times and icey cold at others. I get stiffness and decreased range of motion. When the pain is real bad it spreads up my leg all the way to my hip, and sometimes even to the other foot. (though I think the pain in the other foot is all in my head)

When my symptoms act up my skin takes on a shiny appearance, and may turn red, purple, gray, or blotchy.

I am very sensitive to touch, like from a sock or when I wear a shoe. Sometimes my foot itches so bad I cannot stand it. I do get the creepy crawly feeling and sometimes just a deep throbbing ache.

One of the most painful sensation I get is, yep you got it, AIR. I would have never thought that a cool breeze on a summer day could cause pain, but it does.
 
Red wine also aggrivates my symptoms.

I have tried and tried to figure out my symptoms and learn to contol it but the more I try the more it changes, almost like the pain is saying to me " you cannot contol me, and since you think you have it figured out, I am just going to change on you!" So i gave up trying, as I would rather have my sanity. So i just take it most days. WHatever IT dishes out.

Good luck to you.

Su


CRPS what a piece.
 
Permanent severe nerve damage from crushing injury.
CRPS, unwillingness to take meds.  Doomed to a life of misery but with a positive outlook.
 

Post Edited (pieceOfCRPS) : 6/15/2008 10:05:48 PM (GMT-6)


crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 6/15/2008 10:28 PM (GMT -7)   
Helllo Piece Of CRPS,
I have had crps for over three years now. I am in non stop agony 24 hours a day. Buring,stabbing,slicing,throbbing,swollen and most of all is absolutely unbearable electric shocks coming from my right foot.
 
I have had many surgeries and procedures during this time. From specialists to pain management to institutions on nerve pain etc.....
 
I definately have made some bad decisions as far as surgeries go. They say you have to try them before you can say that they dont work, so, you start at A and work your way through Z.
 
The biggest mistake so far was my scs operation. It never worked correctly, shocking my ass and back of legsconsistantly. Even after 3-4 adjustments it never worked right. The closest I got was maxing out the scs power and trying to reach the problem spot, but the 100% power would feel like it was ripping off my hole foot and got hot flashes. I'm sure I would'nt have made it too long at that power level. So I got that removed as soon as posible and I stll have pains on the side of the scs, considering it was perfectly the same height as my pant button hight.
 
All crps is not the same.You may have 4 or 5 of the 10-15 symptoms and it really dose'nt matter because it rearly mirrors itself.
 
The only thing that surprises me is that you dont take any meds??
Man, If I did'nt have something to calm the stabbing pain I would be a ER patient morning,day and night.
 
Just remember everyone is different and may handle things in a different way.I can always feel the conflict between my med vs pain battling away in my foot. I love when the med wins, but unfortunatly lately pain never loses for too long before it comes back looking for another battle!!
 
Just a couple of rambling comments from one individual. Knoledge and the right doctors hopefully will put you on the right path.
 
        Hope Everyone Has A Pain Free Day!!!
 
                                 mike
 

pieceOfCRPS
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 6/16/2008 1:56 AM (GMT -7)   
wow, i am unwilling to take, but i do take against my will. I have to or I would never get up. But because I dont want to be addicted I reserve the very mild pain pill that I do take (darvacet) which I am sure you all know is like nothing, I reserve it for when I have pain 5 or higher on 1 - 10 scale.

I have noticed a very sight inprovement since the dry hot weather has set it. ( Just in my "at rest" pain). Its still pretty much the same when I walk.

Are your symptoms affected by weather?
CRPS what a piece.
 
Permanent severe nerve damage from crushing injury.
CRPS, unwillingness to take meds.  Doomed to a life of misery but with a positive outlook.
 


pieceOfCRPS
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 6/16/2008 2:01 AM (GMT -7)   
Mike, one more thing, I just have to know. My docs said my symptoms will not get any worse. But they also told me the ECT was painless !!

Has your symptoms worsend any since your diagnosis? Please be honest.

I have been concerned because when I ask them, they tell me no, but they wont look me in the eye when they say it.
thanks

Su
CRPS what a piece.
 
Permanent severe nerve damage from crushing injury.
CRPS, unwillingness to take meds.  Doomed to a life of misery but with a positive outlook.
 


nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 6706
   Posted 6/16/2008 2:02 AM (GMT -7)   

Hey Qhog, I just wanted to say that I read your post when you fisrt put it up and didnt respond as I had no answers but I have a very close friend who suffers from RSD so I waited to talkt o her and she described basically the same "strange" feelings as you did. I say strange as she said that and also noted there is no other feeling in the world or words to describe those occurances. She also said she spent along time being not treated and not even mentioning it to the Docs she was seeing becuase she felt the sysmptoms were so very odd that she wondered if they were not in her mind at times. I know she was in a great deal of pain before she found a Doc at the University of Louisville that knew what she had and how to treat it in some way and that is a far travel from where she lives but she went thru several different Docs that had no idea what was gong on with her.

I cant really tell you any more then this sorry but she did say you needed to find a teaching hospital that knew of RSD and are treating it. She wanted to move to Florida a few years back just to get away from the winter cold here since she avoids going out at all in the cold and winds of winter and fall months as it kills her to do so but she couldnt find a Doc or University that seemed well educated with RSD so she is still here and being a virtual hermit to the weather.

Hi to both CRPs and hoping you all have Docs that are well versed in this as well. I have seen a few forums on RSD and CRPS on other sites so maybe one of them can offer some help if others here have no isite but only go visit dont move from us!


NVR
 
Bilateral knee replacements,spondylosis of L-3,4,5 and S-1, osteoarthritis,premenopausal migraines.
 
Meds: Methadone,xanax,zanaflex,maxide,prempro,K+,indocin,lexapro,neurontin(coming off) lyrica(going onto)
 
 


crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 6/16/2008 11:06 PM (GMT -7)   

Hello pieceofcrps,

Since I have developed crps I have definately gone downhill. I hate to be so negative all the time when I post but honesty,piece of mind and friendship is what Healing well means to me. I just have had so many operations and procedures that never worked out for me that in the hope of curing myself, I think I have made it worst. In the begining I could walk and wear a sneaker with a lot of pain, but I could do it. Now I have to use my cane and no way could I ever put a shoe or sneaker on my foot and I'm so slow that I agravate myself.(i wear one of those blue surgery shoes if i have to wear anything)

I really dont know why doctors say the things they do, but I havent found any doctor that can predict the path of crps or just nerve pain for that matter. I do find that the warm weather is a plus, but I have to heat my foot just about all day or the pain is increased. It's been like that since the start. I just use a heat pad, but the bummer is I cant use my lidocain patches as much because like Gramps said it releases all the med too quickly and I start to feel sick. My pain doc said it can lead to siezures and heart attack so I take it more seriously these days.

Well I guess I chewed your ear off enough for one night!!

I hope your crps path takes a turn for the best. Also thanks nvrthesame98 for the kind words.

I Hope Everyone Has A Pain Free Day!! :-)

                                      mike

 


pieceOfCRPS
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 6/17/2008 2:49 AM (GMT -7)   
Thanks Mike, My docs have at least warned me against any kind of corrective surgery. I am relying instead on correstive orthotics to put my foot in a better position as it doesnt lay right anymore. I cant wear an athletic shoe either only big ugly ones that I hate! Have you tried those big rubber crock clog shoes? I wear those around the house as much as I can and I put a thin shoe pad on top of those litlle rubbber bumps that a normal foot loves but I cannot tolerate.

A heated swimming pool helps me too, i go as often as I can and I truly think that helps me not takke so much pain medicine. I get in the deep in with a belt on and walk and walk and walk, it feels so good on my legs and hips to actually make the movements of a correct walk. Sometimes I can even get in the shallow end and walk on the surface. Then too when I am done in the pool at the gym I hit the steam room, and though it is kinda uncomfortable at first it makes my foot sweat alot and then it feels better. I notcied in the beginning when I got the nerve bloks that lasted only a few days, that they started to work after the warming of the foot and then it hurt for a couple of days then all of a sudden just started sweating profusely and then i felt better. it must have somethng to do with the blocking of the sweat gland or that theyjust dont work right anymore.

thanks for your info. I really appreciate the input.

su
CRPS what a piece.
 
Permanent severe nerve damage from crushing injury.
CRPS, unwillingness to take meds.  Doomed to a life of misery but with a positive outlook.
 

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