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 04-21-2010, 07:52 PM #1
abrown176 abrown176 is offline
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Default My SCS is making me upset!!!

My SCS is getting on my nerves. With the battery repaired from were I fell it is now sticking out again worse than ever. I don't know if I screwed it up. It hurts and moves everytime I roll on that side. I am so discuraged. I just wanted my life back or part of it. I just want to be able to enjoy my kids and help them, not them having to take care of me. I need all the prayers you got. I am loosing control of my emotions. I want it out and fast. But everyone on my end thinks I should try again. I have been through so much surgery that my back is killing me. Isn't it ok to give up and move on to the next thing the doctor has up his sleeve. I just wish I could get them grown and then fall apart. I'm so sorry that you guys are having to read this. But you are the only people who understands this. To make it worse I have so many symptons of MS that I am terrified. Nobody wants to hear this though. But I keep developing new problems and my doctor that I loved so much has left. I need to find someone who cares and doesn't think I'm kookoo. I need a doctor who can go through all these symptoms and help me figure me out. It's hard to find any one to take the time. Sorry for my rant but if I didn't get it off my chest I was going to go nuts. Thanks to all for any advice or a good genral practice doctor in North Carolina near Winston-Salem. THANKS!!!!
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Old 04-21-2010, 08:01 PM #2
Lisa in Ohio Lisa in Ohio is offline
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Hi! I am so sorry for your difficulties. You are right, only you know what is going on inside your body and how you feel. Sometimes I am just over-whelmed by the way my family treats me and thinks about things. I get very weary of all of the things that they think I should do. I also found out later, when me and my kids were going through an unrelated terrible time, that it would have actually helped them if I had fallen apart, because they said that was actually something they would have understood and been able to help me with. My kids were teens at that time, I do not know how old yours are. My prayers are with you that you may find a compassionate doctor and be able to find comfort and peace. You are never alone. peace to you. Lisa
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"Thanks for this!" says:
abrown176 (04-21-2010), wswells (04-22-2010)
Old 04-22-2010, 01:04 AM #3
hope4thebest hope4thebest is offline
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Hi abrown,
Mostly, I want you to know that I read your post twice and you were heard...I know it helps so much to know that your pain, physical and emotional, have been acknowledged by people who understand..

You are at a crossroads with your SCS and are getting several different messages from different folks, which is confusing..
I hope you are able to take in the info objectively, and even record it on paper, so that you can review it, analyze it and mull it over...
In the meantime keep ommunicating and finding our different resources so you can make an informed decision. Maybe the RSDSA website can help you locate a good doc in your area, or one of the posters may have a suggestion.

Last year, I was having some MS symptoms and my WC doc wanted me to have a BRAIN CT scan to rule it out....needless to say WC would have not approved this test, and they would have let us know weeks later....so she made some calls to my regular insurance doctor, they called my own insurance co. and the CT scan was approved....

I don't have an SCS so I'm sorry I can's share technical experience.
I hope you are able to gather your strength (perhaps after shedding some tears to help you diffuse your emotions ) to be able to move forward and figure out what YOU want to do..
I am so sorry you are having a very hard time...things will change... xoxoxox
Sending many hugs,
hope4thebest
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Old 04-22-2010, 06:25 AM #4
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Heart abrown....

I see you've been thru the wringer! You have every right to feel the way you are feeling and it's good that you come here to let it out!
I've been praying so much for your situation to smooth out......
You need good, clear direction from your Dr's!!

Vent all you want......never apologize......without this forum, I most certainly would have crawled in whole and never looked back.
But we somehow keep on......for our families.......
We need each other here.

I'm so sorry things seem so screwed up right now.
Hang on to your friends

We'll somehow get thru.....
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Old 04-22-2010, 09:48 AM #5
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thanks guys today is so much worse i hurt all over, from head to toe. my muscles in every part of my body has been jumping spazzing and cramping all night. i cant even get up. it hurts to type so i guess ill go. thanks again.
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Old 04-22-2010, 10:42 AM #6
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Hi I am so sorry for your pain and all you are facing. I have a few thoughts. Are you or have you see a neurologist? Before you got the scs did you have mri of the brain and spine? I am sorry if you stated this somewhere before. When they were ruling out other conditions MS was one of them and why the mris but now I know the scs you can't have one. I still would find a good neurologist. As for the scs I had been told placement of the battery is important for many people in terms of pain. This is what I heard as i don't have one. Could you put a call into the person who did the repair?Is there anyone in real time you can reach out for support. Sometimes I feel like I can't get up the umph to see another doctor and that is when I need the help of others to push me. Even just for moral support. I am sorry I don't have more to suggest. If you want an email buddy I am here. Please hang in there and for myself when I feel just so overwhelmed with pain etc I try to take 1 hour at a time.
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Old 04-22-2010, 10:48 AM #7
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Quote:
Originally Posted by daniella View Post
Hi I am so sorry for your pain and all you are facing. I have a few thoughts. Are you or have you see a neurologist? Before you got the scs did you have mri of the brain and spine? I am sorry if you stated this somewhere before. When they were ruling out other conditions MS was one of them and why the mris but now I know the scs you can't have one. I still would find a good neurologist. As for the scs I had been told placement of the battery is important for many people in terms of pain. This is what I heard as i don't have one. Could you put a call into the person who did the repair?Is there anyone in real time you can reach out for support. Sometimes I feel like I can't get up the umph to see another doctor and that is when I need the help of others to push me. Even just for moral support. I am sorry I don't have more to suggest. If you want an email buddy I am here. Please hang in there and for myself when I feel just so overwhelmed with pain etc I try to take 1 hour at a time.
Hi I do not see a nuero and never had a MRI of the brain and spine. Nothings been ruled out. I have been trying to make a list of all the symptoms no matter how small and then take to my pain doc. He is the only one who i feel really takes time and listens. As I was talking to a friend who has ms she said I had a lot of the same symptons she had. I looked up a detailed list of symptoms and scary enough I have over 50% of what I read. I just want some doctor to help me rationalize the symptons and maybe figure this out. Thanks again.
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Old 04-22-2010, 04:35 PM #8
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Shocked Oh my!

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Originally Posted by abrown176 View Post
thanks guys today is so much worse i hurt all over, from head to toe. my muscles in every part of my body has been jumping spazzing and cramping all night. i cant even get up. it hurts to type so i guess ill go. thanks again.
This sounds like you're headin right into 'crisis' mode! My dear friend, I am so concerned about all this!
CALL the Surgeon's office or the Pain Doc you like!! The weekend is coming up and I don't want to see you ending up in ER!
These guys NEED to know these details! This is not right! Something needs to be addressed, or you need something to calm the spasms down at least....
....do you have a fever?

I am so upset about what's going on with you.....
Please let a Dr know how you feel BEFORE the weekend gets here! K?
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Old 04-22-2010, 05:28 PM #9
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Hi! I will call the doctor in the morning, if I make it through the night. I felt like I might had a fever, but I take Hydrocodone 10/35 every four hours and mobic. i feel all that would probably mask a fever or have it but it be low grade. Cause when the kids get a fever they use tylenol and motrin which is basically like these two but mine are stronger meds with more ingredients. if they can't help me I just want to cry and get out of it, but I can't do that I have two beautiful children to live for. They are 6&7. They are the only reason I am trying all this stuff to try and get my life back so I can play with them the way we did years ago. The park and vacations were so fun. I just want atleast part of my life back.
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