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 02-10-2012, 12:52 AM #1
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Unhappy gods this hurts!!

yet another day of being up with a little over 5 hours sleep... pain so intense it makes me literally feel sick and the spasms just won't quit! they are going nonstop in 2 to 3 places at once... wish they would just cut the da**ed arm off and let me enjoy life pain free!!
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Old 02-10-2012, 02:08 AM #2
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Sorry you are not doing well. I'm having a particularly bad flare in my left arm at the moment which means it is all but useless at the moment. Think I overdid it yesterday and today trying to get all the Christmas decorations put away and organized. Trying not to let it get me down though because I have my long awaited doctor's appointment tomorrow (well...8 hours from now anyway). Of course...I should be SLEEPING right now so that I am in good shape for leaving the house but not much I can do about that when the pain is as bad as it is now. Instead I've been making sure I have all the information and papers that I need for the appointment...including writing out a list of the things that I want to go over with the doctor. Guess I should be thankful the flare today is in my left arm and not the right one.

I hesitate to say this because I don't like to tell anyone what to think or say (we all have to deal with the pain in our own way) but I hope you understand that cutting the arm off will not make you pain free. Arm or no arm the RSD pain will continue. So, in my opinion, it does no good to wish for them to cut it off because the result just will not be that you will be pain free. I totally understand your feeling though...if it WERE a choice between no arm and RSD I would choose no arm in a second. But it's not a choice between those two things...you can either have RSD with the arm or RSD without the arm...in which case my option would be to keep the arm. There is always hope that you will regain use of it once you get a good doctor and physical therapist who can get you what you need to get that function back. I really am praying that the doctor you see next week is "the one" because it is just not right for you to have to suffer the way you are.
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Old 02-10-2012, 02:17 AM #3
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Originally Posted by catra121 View Post
Sorry you are not doing well. I'm having a particularly bad flare in my left arm at the moment which means it is all but useless at the moment. Think I overdid it yesterday and today trying to get all the Christmas decorations put away and organized. Trying not to let it get me down though because I have my long awaited doctor's appointment tomorrow (well...8 hours from now anyway). Of course...I should be SLEEPING right now so that I am in good shape for leaving the house but not much I can do about that when the pain is as bad as it is now. Instead I've been making sure I have all the information and papers that I need for the appointment...including writing out a list of the things that I want to go over with the doctor. Guess I should be thankful the flare today is in my left arm and not the right one.

I hesitate to say this because I don't like to tell anyone what to think or say (we all have to deal with the pain in our own way) but I hope you understand that cutting the arm off will not make you pain free. Arm or no arm the RSD pain will continue. So, in my opinion, it does no good to wish for them to cut it off because the result just will not be that you will be pain free. I totally understand your feeling though...if it WERE a choice between no arm and RSD I would choose no arm in a second. But it's not a choice between those two things...you can either have RSD with the arm or RSD without the arm...in which case my option would be to keep the arm. There is always hope that you will regain use of it once you get a good doctor and physical therapist who can get you what you need to get that function back. I really am praying that the doctor you see next week is "the one" because it is just not right for you to have to suffer the way you are.
I know, it is the pain screaming, and cry I did, I just showered and damn that hurt!!! Tried to keep my right side out of the water as long as I could, but the I got to deal with cold water and cold air which made it worse. I can lightly touch my elbow sometimes, just not other areas, and like right now i have intense elbow pain with both nerve and muscle spasms right there as well, and spasms up and down my arm and side... If I was up for about 6 more hours I would finish off my drink I started yesterday but since it is 1:15 am, i gotta wait.

Plus, if the reviews I have read on this doctor are right, I might be in trouble, the people posting reviews said they only went because he handled workers comp cases and didn't make them wait for prior authorization.

Well, time to end post for now, I gotta find something that will occupy my mind, I got results from another doctor and I also have ADD / ADHD
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Old 02-10-2012, 02:43 AM #4
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Just try to go to the appt with an open mind if you can. Remember that most people who post reviews are ones who are unhappy for any number of reasons...and I would imagine in the case of PM docs that one of the many reasons is that they didn't hear what they wanted to hear be that regarding pain medications, treatment options, etc. Not saying the reviews may not be justified...just that it doesn't do any good to worry before you get there and can judge for yourself. Come in prepared with all the things you want to discuss with the doctor, your history, what your goals are regarding treatment, etc and just see how it goes.

The doctor who first diagnosed me had a pretty rough bedside manner and I didn't care for the different things that he said and certain things he brought up during appointments that I really felt were overstepping for a doctor. But in hindsight he really brought out my fighting spirit and looking back I think he said and did these things on purpose for that very reason...and my fighting spirit has served me well while going through all of this. I probably would not have written good reviews about him at the time...and I still get angry about some of the things he said during my appointments...but realistically he DID diagnose me and without him I probably would have gone YEARS more without getting a proper diagnosis and proper treatment. So my personal feelings have less to do with how good a doctor he was and more to do with his bedside manner...and I can only really see this now when I haven't seen him for 2 years (he retired from pain management).

At any rate...still hoping it works out. But if it doesn't then you keep looking and fighting.

Okay...I NEED to try and get some sleep. Gotta be up in 5 hours to get ready for my doctor's appointment. I'm excited and nervous and unfortunately also in pain. I hope if I can get a couple hours of sleep that my arm will feel better when I wake up. I have a lidoderm patch on it...seems to help a little...
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Old 02-10-2012, 04:08 AM #5
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Quote:
Originally Posted by catra121 View Post
Just try to go to the appt with an open mind if you can. Remember that most people who post reviews are ones who are unhappy for any number of reasons...and I would imagine in the case of PM docs that one of the many reasons is that they didn't hear what they wanted to hear be that regarding pain medications, treatment options, etc. Not saying the reviews may not be justified...just that it doesn't do any good to worry before you get there and can judge for yourself. Come in prepared with all the things you want to discuss with the doctor, your history, what your goals are regarding treatment, etc and just see how it goes.

The doctor who first diagnosed me had a pretty rough bedside manner and I didn't care for the different things that he said and certain things he brought up during appointments that I really felt were overstepping for a doctor. But in hindsight he really brought out my fighting spirit and looking back I think he said and did these things on purpose for that very reason...and my fighting spirit has served me well while going through all of this. I probably would not have written good reviews about him at the time...and I still get angry about some of the things he said during my appointments...but realistically he DID diagnose me and without him I probably would have gone YEARS more without getting a proper diagnosis and proper treatment. So my personal feelings have less to do with how good a doctor he was and more to do with his bedside manner...and I can only really see this now when I haven't seen him for 2 years (he retired from pain management).

At any rate...still hoping it works out. But if it doesn't then you keep looking and fighting.

Okay...I NEED to try and get some sleep. Gotta be up in 5 hours to get ready for my doctor's appointment. I'm excited and nervous and unfortunately also in pain. I hope if I can get a couple hours of sleep that my arm will feel better when I wake up. I have a lidoderm patch on it...seems to help a little...
I actually saw a doctor back when i had my first major infection of my arm after crps onset (yes there have been more infections), and she said literally to my face there was NO way my arm could hurt that bad!! they were literally marking my arm daily with marker to show infection spread rate and i kept almost crying and pulling my arm away from her... needless to say, i have never ever saw her again, even when she was the only doctor available to get possible treatments!

i agree too, i am going to give this guy a fair shake and see, i do have proven issues and such. i just hope they have free wireless internet in their offices as i need to bring my computer with to show the stages, treatments, etc. and all the research i've done. too much to print lol. another doctor i was recommended to i also researched, then called, and the reviews were spot on - they won't see anyone unless have medical insurance, even if we pay the visit charges ourselves. hmm.....

also started applying for ssdi, but i admit the questions and all are beyond me, so i am searching for an attorney to help there as well... just the basic stuff took me about two weeks LOL!
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