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 03-09-2010, 04:38 PM #1
mymomsadvocate mymomsadvocate is offline
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Unhappy In need of a miracle..like every victim of this disease.

Hey everyone,
My name is Danielle. I'm a 21 year old EMT-Intermediate, and also my Mother's advocate. My Mom has been suffering with RSDS for ten years now, and has attempted many painful test and trials such as Prolotherapy, and Nerve Blocks. Her symptoms include and are not limited to the swelling of her right lower limb, discoloration, hypersensitivity, severe pain, inability to ambulate for several days on end due to the pain, and many sleepless nights. We live near the Beaumont, Texas area and if not known, the Medical resources here are very limited. My Mom is only 44 years old, and I wish for nothing more than just to see her pain free for once, no matter the cost. I came into the Medical Field with hopes and dreams of helping people, and with the knowledge that comes with that, you feel more helpless because you know what's out there to help, but it's a matter of finding out how to get them there and get them the treatment that they need. It's terrible to know that someone hurts continuously for days to years at a time with no break. We have been to multiple Doctor's, from Beaumont to Arizona who all say the same dreaded sentence. "There's nothing we can do." If anyone knows of a Doctor, no matter how far, or a treatment that could possibly help, please let us know. And hopefully together, we can help build RSDS awareness, build knowledge and help others not suffer the same way.
Praying for a miracle,
Danielle.
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Old 03-09-2010, 06:24 PM #2
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Hi Danielle,

Have your mom tried lidocaine or ketamine yet? See "ketamine klub" on facebook for a listing of docs that do ketamine, there are a couple in Texas.

Don't ever, ever give up hope. There are always more things that you can try. I have had 6 lidocaine infusions, and I'm having my 7th this Friday. They don't fix RSD by any means. But the horrible burning pain is a little better. Every little bit helps. And my insurance companies don't have a problem paying for them (even though they cost more than a ketamine infusion does).

Good luck, Sandy



Quote:
Originally Posted by mymomsadvocate View Post
Hey everyone,
My name is Danielle. I'm a 21 year old EMT-Intermediate, and also my Mother's advocate. My Mom has been suffering with RSDS for ten years now, and has attempted many painful test and trials such as Prolotherapy, and Nerve Blocks. Her symptoms include and are not limited to the swelling of her right lower limb, discoloration, hypersensitivity, severe pain, inability to ambulate for several days on end due to the pain, and many sleepless nights. We live near the Beaumont, Texas area and if not known, the Medical resources here are very limited. My Mom is only 44 years old, and I wish for nothing more than just to see her pain free for once, no matter the cost. I came into the Medical Field with hopes and dreams of helping people, and with the knowledge that comes with that, you feel more helpless because you know what's out there to help, but it's a matter of finding out how to get them there and get them the treatment that they need. It's terrible to know that someone hurts continuously for days to years at a time with no break. We have been to multiple Doctor's, from Beaumont to Arizona who all say the same dreaded sentence. "There's nothing we can do." If anyone knows of a Doctor, no matter how far, or a treatment that could possibly help, please let us know. And hopefully together, we can help build RSDS awareness, build knowledge and help others not suffer the same way.
Praying for a miracle,
Danielle.
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Old 03-09-2010, 07:51 PM #3
SandyS SandyS is offline
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Hi Danielle,

Like you I am an advocate for my daughter...She is 16 years old and has been suffering for many years. We see Dr. Anthony Kirkpatrick in Tampa, Florida...He is out of pocket, but one of the best. You should go to the RSDS Web page and they will give you a list of doctors close to you. My daughter has never done Lidocaine but she has done the Ketamine Infusions. She had relief from the Ketamine, but she still has pain. I hope you can find some answers. Always, Always, Always, remember that your moms pain is REAL...don't ever let anyone try to say that it isn't. Keep believing her, you are her advocate. You will find answers. Just keep looking. There are things that still can be done for her. Is she in PT/OT, or warm pool therapy?

My prayers are with you.

Sandy

Quote:
Originally Posted by mymomsadvocate View Post
Hey everyone,
My name is Danielle. I'm a 21 year old EMT-Intermediate, and also my Mother's advocate. My Mom has been suffering with RSDS for ten years now, and has attempted many painful test and trials such as Prolotherapy, and Nerve Blocks. Her symptoms include and are not limited to the swelling of her right lower limb, discoloration, hypersensitivity, severe pain, inability to ambulate for several days on end due to the pain, and many sleepless nights. We live near the Beaumont, Texas area and if not known, the Medical resources here are very limited. My Mom is only 44 years old, and I wish for nothing more than just to see her pain free for once, no matter the cost. I came into the Medical Field with hopes and dreams of helping people, and with the knowledge that comes with that, you feel more helpless because you know what's out there to help, but it's a matter of finding out how to get them there and get them the treatment that they need. It's terrible to know that someone hurts continuously for days to years at a time with no break. We have been to multiple Doctor's, from Beaumont to Arizona who all say the same dreaded sentence. "There's nothing we can do." If anyone knows of a Doctor, no matter how far, or a treatment that could possibly help, please let us know. And hopefully together, we can help build RSDS awareness, build knowledge and help others not suffer the same way.
Praying for a miracle,
Danielle.
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Old 03-09-2010, 10:45 PM #4
bobber bobber is offline
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Danielle
May the lord in whom i serve and fear ,give you the answer and relief that you desire,,psalm 37:4
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Old 03-10-2010, 02:08 AM #5
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its really great that your advocating for your mom.. And that you went into the medical field for the purpose of finding help for people like us.. Its a great comfort.. But dont ever give up.. There are people out there willing to help.. just like you are.. we are out there. not many of us. but were out there. So god bless you.. And from research there is alot of help in the florida area.. mostly up north.. Like New York.. Boston. those bigger areas.. But you can go to www.rsdrx.com and find some places closer to home i think.... hope that helps.. also i think.. www.rsdhope.com..
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