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 03-31-2011, 03:50 AM #1
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Default Scared (long)

So...it's 3am and I can't seem to fall asleep. I am just not in good shape these days. Everything seems to hurt worse and worse as each day goes by. I have a hard time sleeping (and sleeping is the only time I am not in agony). My dizziness/nausea has gotten so bad that I am not keeping any sort of food down. I've given up on trying to walk because between the pain in my ankle (CRPS), the uncoordination, and the dizziness it is just a lost cause (I've fallen many times and tip over with every step I take with the walker). My heart rate is constantly over 120 these days (as high as 157 when I've taken a reading)...and I'm regularly having chest pains. The vision problems and the hallucinations are really freaking me out. The headache I have is driving me nuts. And I am absolutely going stir crazy living on the couch.

My appointment with a neurologist at Northwestern in chicago is FINALLY almost here. I see him tomorrow and I am just a wreck thinking about it. I've had to wait 3 weeks for this appointment and while I've been at a standstill from a treatment perspective...my condition has not been standing still. I am so nervous about this appointment because I am putting so much...I'm not quite sure how to explain it...faith I guess...in this appointment. Faith that we can finally move forward and get some answers. As much as I don't relish the idea of being admitted to the hospital (I've never been before and it scares me)...I really believe it's what needs to happen so they can just run whatever tests they need to run and figure this out. I'm very happy that my boyfriend was able to get the day off work so he can go with me, and my mom will be there as well, so I will have some support. And I think I need it given my state of mind right now. I just NEED things to start moving again in terms of treatment. I NEED relief from this pain because so far I haven't been given anything to help me. I'm still just taking the meds that I was originally on for my CRPS...nothing to treat this new stuff.

I just don't know what I'll do if I don't get admitted to the hospital tomorrow. If this doc passes me off to another doc or just wants to see me on an outpatient basis...I just might lose it. I have tried so hard through this process to keep a level head even with all the frustrations of weeks between appointments with nothing to show for it. It's been 2 full months since I had the LSB that caused all this stuff to start...and it's been a LONG 2 months. I've been out of work since the end of December and I am just angry about that...I miss it. I am not someone who does well with being inactive. I want to be moving. And even more frustrating is that my one hobby (cross stitch) is not something that I can do right now. It's too painful on my back/spine to move my arms and stitch. That really SUCKS. So my options these days are to surf the web on my netbook, re read the graphic novels I have (can't focus enough to read any regular books), or watch tv (which I am so sick of now that I think I could go months without watching it once I get better). And even doing those things is frustrating because I am constantly shifting and moving around trying to get myself in a position that is the least painful possible...which is much harder than it should be.

I just want to cry...and I do sometimes...but I am trying so hard to stay positive. I keep telling myself that I KNOW I will get better. I'm a very stubborn person and this usually works for me. But this process is so SLOW. I am starting to lose my grip a little and I just really need things to work out tomorrow. Not that I'm expecting a diagnosis TOMORROW...I just want to feel like I am headed in the direction of a diagnosis...you know? A friend of my dad's from church (in Nashville) sent me an article that she thought of when my dad was telling her what I was going through. It was about a woman who it took 10 YEARS to get a diagnosis of her multiple autoimmune diseases. I know she meant well...but that article was not in the least bit comforting. I know that my case is complicated with boatloads of symptoms that so far have no explanation...so I can see WHY the woman thought of the article...but I'm not prepared to wait TEN YEARS for a diagnosis. I'm thinking...like...within a month or so I will be back to working again. I know I'm going to need some extensive PT after being inactive for so long. Like I said...I'm stubborn...so this is not a problem for me. I'm willing to do whatever I need to do to get my life back. But I need HELP...I need to know what I need to do to get there and I need to get relief for this unbelievable PAIN that I am in...not to mention the other crazy symptoms that I am having.

I'm just so scared. I don't want my fear to get the best of me...I know I need to be strong. But the time thing is just wearing me down. It's easier to be strong when you feel like you are DOING something about it...whether that is trying a new treatment or going to doctor appointments or having tests run...but this stand still is just KILLING me. But...I find out tomorrow what happens from here. I'm just anxious about it all. Not sure what to expect out of the appointment. Not sure what to expect if I DO get admitted to the hospital. And scared to death of what happens if I DONT get admitted.

And with all that running around in my head and going on with my body...is there any wonder why I can't sleep?
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Old 03-31-2011, 08:27 AM #2
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Heart

You have been in my thoughts and will continue to be in my thoughts and prayers. I'm not sure if you are at your appointment but maybe I can ease your mind a little by sharing my experience at North Western. I too was referred to the neurology dept and I think those Dr's had the most sincerity and compassion then any other establishment here in Illinois. You will be seen by a team of Dr's and they will work very hard on getting you to a better place. Faith is very important and please keep us posted (when you are able) as to how you are doing.
Xoxoxo gentle hugs
Sarah
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Old 03-31-2011, 07:01 PM #3
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Quote:
Originally Posted by Swatgen27 View Post
You have been in my thoughts and will continue to be in my thoughts and prayers. I'm not sure if you are at your appointment but maybe I can ease your mind a little by sharing my experience at North Western. I too was referred to the neurology dept and I think those Dr's had the most sincerity and compassion then any other establishment here in Illinois. You will be seen by a team of Dr's and they will work very hard on getting you to a better place. Faith is very important and please keep us posted (when you are able) as to how you are doing.
Xoxoxo gentle hugs
Sarah
Oh...thank you for that. It does make me feel better. My appointment is tomorrow and I am still nervous about it. But your words have put me at ease quite a bit. Thank you.
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Old 03-31-2011, 07:11 PM #4
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Default just rest

Just take a moment to rest if you can't sleep. The stress you feel does interfer with sleep and so does pain. You are going to a good facility. I hope and pray you get a really great dr. You will feel better just having someone on your side again to help you. That is what a good doctor does. I wish you all the best. ginnie
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Old 04-01-2011, 05:16 PM #5
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Dear Cat

I have been praying for your peace through all this. i hope your appointment went great. I hope that they admitted you and you will give us an update when you come home
Blessings
Lori
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Wishing you a day of pain free movement that turns into forever!
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