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Hi All So Glad I Found This Place :)

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Unread 01-22-2012, 12:20 PM   #1
DaniRSD
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Default Hi All So Glad I Found This Place :)

Hi my name is Dani and I have RSD in my right leg well foot but has traveled past my knee. Total numbness and severe burning in my foot with grinding weird pain in my knee plus above my ankle it feels like the circulation hurts? Anyone experience that?

I feel so alone like no one understands I am not happy right now with my Doc because I am seriously under medicated but I'm dealing with it. All I do though is lay in bed and try to get my leg warm.

I am 32 love my 2 Tonks and Balanese this disease is ruining my life and could ruin my relationship if I don't get better quality of the life. The Doc has me in a hard position because I'm afraid to tell him the medicine he gave me didn't work. The LSB did help take the edge off. I had to stay awake and it was horrid to me.

Supposedly I am at the best place on Long Island but this Doc has to get to know me to trust me and I know that takes time. It's upsetting because I can't say these meds with the LSB's worked great. I think it's spreading to my right hand and def left foot so I'm really scared.

I'm looking for advice from people who have this disease and can maybe lead me in the right direction for TX. I know one size does not fit all but just knowing I am not alone gives me much comfort!

Looking forward to this community!
Namaste`~Dani
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Dmom3005 (01-23-2012), Rrae (01-22-2012)
Unread 01-22-2012, 03:33 PM   #2
Rrae
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Smile Hello DaniRSD!

Welcome Aboard!

I'm so glad you found us! There are so many wonderful people here who suffer from RSD and we know exactly how you feel and what it's doing to your life. Here's the shortcut link to get you to the RSD forum:
http://neurotalk.psychcentral.com/fo...sprune=-1&f=21

Make yourself at home here -we are all very down to earth and the support is wonderful. There's alot of good information on RSD in the very upper part of the RSD forum, so be sure to check that out!

Also, here's a forum on sleep disorders. I saw that you had mentioned this in your other post....
http://neurotalk.psychcentral.com/fo...sprune=-1&f=45

It's really great that you are here!

Caring,
Rae
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Dmom3005 (01-23-2012)
Unread 01-23-2012, 02:05 AM   #3
Darlene
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Dani,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, welcome to a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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Unread 01-23-2012, 08:23 PM   #4
Dmom3005
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Welcome Dani.

My thoughts are with you. I sure understand pain, So please make sure
your doctor knows how much pain your in.

He/she can't help you if you don't tell him/her. Its also they just assume
things are fine. Thats what happened when I didn't tell mine I needed
more Gabapentin for my fibromyalgia.

Not the same, but sure alike. I'm doing much better having a increase.

Donna
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Unread 01-23-2012, 08:37 PM   #5
keep smilin
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Quote:
Originally Posted by Dmom3005 View Post
Welcome Dani.

My thoughts are with you. I sure understand pain, So please make sure
your doctor knows how much pain your in.

He/she can't help you if you don't tell him/her. Its also they just assume
things are fine. Thats what happened when I didn't tell mine I needed
more Gabapentin for my fibromyalgia.

Not the same, but sure alike. I'm doing much better having a increase.

Donna
Hello and welcome Dani,

So sorry to read that you have RSD.. I too, have RSD starting in my right knee and has now traveled.. It is a bear and we all understand your pain and desperation... Please, don't be afraid to keep and open communication with your Dr. ESP. If you are not getting coverage with your meds.. It will be a trial and error for awhile until you hit on something..at least to take the edge off..remember do not use ice on your RSD affected areas and keep a journal of how your days are going... Continue to take each day as it presents itself and know that we will add you to our RSD family here..biggest group of caring people around! Feel free to jump over to the RSD group of postings..I'm sure you will learn a lot and feel loved as you read along... Any questions..just ask away!!

Take care... Kathy
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Unread 01-23-2012, 08:48 PM   #6
Abbie
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Smile Hello and Welcome!

Hello DaniRSD and WELCOME to NeuroTalk!

I see that Rae has graciously given you a couple of great links that my be of help and/or interest to you!

Please feel free to roam around and join in anywhere! You are also welcome to kick off your shoes, pull up a chair, and make yourself at home.

I look forward to seeing you around the board.

Abbie
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