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CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body - her nerves are on fire... it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense... we keep searching for help and guidance... since many do not understand this horrible affliction.... thanks for any advice....

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missbiss | @missbiss | Nov 7, 2020
In reply to @faithwalker007 "Which type of CRPS do you have?" + (show)
@faithwalker007

Which type of CRPS do you have?

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Type 2

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Faithwalker007 (Renee) | @faithwalker007 | Nov 8, 2020

That is what the DEA has done to Pain care in Wyoming. We are down to 5 major clinics and less than 15 Pain specialists for the entire state.

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2 replies
Hank | @jesfactsmon | Nov 8, 2020
In reply to @faith88 "Please help me how do I get the emails to stop it is way too much..." + (show)
@faith88

Please help me how do I get the emails to stop it is way too much for me

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@faith88
To stop the emails first go into "Profile and settings" from the upper right corner of the page you are on. From that menu click on "Account Settings" and then under "Notifications" you will see "Disable all email notifications". Click Edit. Then click on "Turn off all email notifications". Then the emails will stop. Best, Hank

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1 reply
lioness | @lioness | Nov 8, 2020
In reply to @faithwalker007 "That is what the DEA has done to Pain care in Wyoming. We are down to..." + (show)
@faithwalker007

That is what the DEA has done to Pain care in Wyoming. We are down to 5 major clinics and less than 15 Pain specialists for the entire state.

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@missbiss Let's pray when our new President takes office he will have some influence on the DEA

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1 reply
lioness | @lioness | Nov 8, 2020
In reply to @jesfactsmon "@faith88 To stop the emails first go into "Profile and settings" from the upper right corner..." + (show)
@jesfactsmon

@faith88
To stop the emails first go into "Profile and settings" from the upper right corner of the page you are on. From that menu click on "Account Settings" and then under "Notifications" you will see "Disable all email notifications". Click Edit. Then click on "Turn off all email notifications". Then the emails will stop. Best, Hank

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@jesfactsmon Hi Hank didn't you read my post as to how to stop emails

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1 reply
Faithwalker007 (Renee) | @faithwalker007 | Nov 8, 2020
In reply to @lioness "@missbiss Let's pray when our new President takes office he will have some influence on the..." + (show)
@lioness

@missbiss Let's pray when our new President takes office he will have some influence on the DEA

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Not holding my breath

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1 reply
lioness | @lioness | Nov 8, 2020
In reply to @faithwalker007 "Not holding my breath" + (show)
@faithwalker007

Not holding my breath

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I know first pandemic has to get vaccine

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lorirenee1 | @lorirenee1 | Nov 8, 2020
In reply to @faithwalker007 "That is what the DEA has done to Pain care in Wyoming. We are down to..." + (show)
@faithwalker007

That is what the DEA has done to Pain care in Wyoming. We are down to 5 major clinics and less than 15 Pain specialists for the entire state.

Jump to this post

@faithwalker This is sickening, Renee. Just sickening. No wonder you are traveling for hours. Terrible. Lori

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lorirenee1 | @lorirenee1 | Nov 8, 2020
In reply to @faithwalker007 "Mine is type 2 as well. The surgeon severed my lumbarsacral plexus in my right hip..." + (show)
@faithwalker007

Mine is type 2 as well. The surgeon severed my lumbarsacral plexus in my right hip when I was having my right TKR. The anesthesiologist couldn’t get spinal anesthesia to work so they finally gave up and switched to general and hurriedly completed the TKR in 45 minutes. My neurologist believes when they were positioning me, they pulled my leg beyond its yield point and the plexus was severed.
I have drop foot as well in the right foot.
I also have vivid nightmares of the surgery. The only surgery on the 25 I’ve had that I can dream about and remember details about.

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@faithwalker Renee, God in Heaven, I would just hug you to pieces, except I fear I would hurt you! My heart and soul goes out to you. You have done so many great things with your life, Renee. More than most people ever do. And here you are, just suffering. My heart hurts, reading you. Just hurts. What can I even say? Lori Renee

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1 reply
lorirenee1 | @lorirenee1 | Nov 8, 2020
In reply to @k135 "i have CRPS type 2 - triggered from a broken leg. i was unable to walk,..." + (show)
@k135

i have CRPS type 2 - triggered from a broken leg. i was unable to walk, couldn’t wear pants or have anything touch my leg, couldn’t tolerate noise or vibrations ie: car ride. It spread to my other knee and both feet, but it’s not as severe there. I honestly am about 95% better now, been back at work for about 2 years - honestly never thought i would get to where i am now

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@k135 Do you attribute your improvement to anything specific? There are not many happy endings with CRPS. My best to you, Lori Renee

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