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Want to talk with others. Have you found relief from CRPS?

Posted by mam14 @mam14, Feb 4, 2019

I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

mam14 | @mam14 | Feb 23, 2019
In reply to @rsnowflake "It's the worst, I've had pneumonia twice since being diagnosed and have been in the hospital..." + (show)
@rsnowflake

It's the worst, I've had pneumonia twice since being diagnosed and have been in the hospital both times. I'm only 45 and feel 100 most days. I've started medical marijuana and it's helped so much. Gives me some sleep at night. I hope u r somewhere it's available to you. Feel free to write any time. My name is Renee.

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Renee, how did you end up with pneumonia? Was it after an illness? I have had a cough for a long time. Some mornings it gets really bad. My doctor changed one of my blood pressure meds but it hasn't helped. I feel like CRPS is attacking my entire body. Everything hurts and nothing seems to work right.

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1 reply
rsnowflake | @rsnowflake | Feb 23, 2019
In reply to @mam14 "Renee, how did you end up with pneumonia? Was it after an illness? I have had..." + (show)
@mam14

Renee, how did you end up with pneumonia? Was it after an illness? I have had a cough for a long time. Some mornings it gets really bad. My doctor changed one of my blood pressure meds but it hasn't helped. I feel like CRPS is attacking my entire body. Everything hurts and nothing seems to work right.

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Yeah, I've always been sicker then most people, but since being diagnosed my health has deteriorated. But I push through it as much as I can . I was actually in the hospital again last night. With my asthma . It's a hard disorder it complicates tons of things because it's neurological, but they seem not to really know anything. I've found out from a lot a research on my own, trials, medical journals. But I think I'm going to have to find a doctor who's a specialist. Keep talking and u can ask me anything or talk whenever you need. Renee
.

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1 reply
mam14 | @mam14 | Feb 23, 2019
In reply to @rsnowflake "Yeah, I've always been sicker then most people, but since being diagnosed my health has deteriorated...." + (show)
@rsnowflake

Yeah, I've always been sicker then most people, but since being diagnosed my health has deteriorated. But I push through it as much as I can . I was actually in the hospital again last night. With my asthma . It's a hard disorder it complicates tons of things because it's neurological, but they seem not to really know anything. I've found out from a lot a research on my own, trials, medical journals. But I think I'm going to have to find a doctor who's a specialist. Keep talking and u can ask me anything or talk whenever you need. Renee
.

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That's really good to know that I have someone that understands and knows what is going on. I'm so sorry that you were back in the hospital. I hope that you are feeling better.

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struggler23 | @struggler23 | Feb 26, 2019

May I ask what they feel caused the crps ?

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2 replies
rsnowflake | @rsnowflake | Feb 26, 2019
In reply to @struggler23 "May I ask what they feel caused the crps ?" + (show)
@struggler23

May I ask what they feel caused the crps ?

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It's usually caused by a break or sprain. I broke my ankle and I couldn't do physical therapy because my ankle swelled and turned odd colors, but my orthopedic surgeon said the break was totally fine. Basically it broke and then the brain never knows to turn off the pain signals, so it sends them other places.

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1 reply
mam14 | @mam14 | Feb 26, 2019
In reply to @struggler23 "May I ask what they feel caused the crps ?" + (show)
@struggler23

May I ask what they feel caused the crps ?

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I ruptured the fascia on the bottom of my foot. I had some small tears and bruising. I moved too fast and it snapped. It was immobilized for so long and was so painful. That is what caused it with me. I read that it can occur without injury also.

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2 replies
mam14 | @mam14 | Feb 26, 2019
In reply to @rsnowflake "It's usually caused by a break or sprain. I broke my ankle and I couldn't do..." + (show)
@rsnowflake

It's usually caused by a break or sprain. I broke my ankle and I couldn't do physical therapy because my ankle swelled and turned odd colors, but my orthopedic surgeon said the break was totally fine. Basically it broke and then the brain never knows to turn off the pain signals, so it sends them other places.

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Renee, did you say that you had a spinal stimulator implanted?

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1 reply
struggler23 | @struggler23 | Feb 27, 2019
In reply to @mam14 "I ruptured the fascia on the bottom of my foot. I had some small tears and..." + (show)
@mam14

I ruptured the fascia on the bottom of my foot. I had some small tears and bruising. I moved too fast and it snapped. It was immobilized for so long and was so painful. That is what caused it with me. I read that it can occur without injury also.

Jump to this post

I had an undiagnosed 3rd degree tear of my L calcaneal cuboid ligament (heel bone); so I walked around in severe pain, going from 1 specialist to another for 3 months before an orthopedist diagnosed both it and the CRPS ( then, 1995, more commonly known as RSD). Put me in a foot, ankle leg brace for 2-3 months, and put me on gabapentin.

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3 replies
rsnowflake | @rsnowflake | Feb 27, 2019
In reply to @mam14 "Renee, did you say that you had a spinal stimulator implanted?" + (show)
@mam14

Renee, did you say that you had a spinal stimulator implanted?

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Yes I have a spinal stimulator implant. It has helped my arms and hands tremendously. I had severe signs in my hand of crps and it jumped to my other arm. you are welcome to ask anything about it. Renee

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1 reply
rsnowflake | @rsnowflake | Feb 27, 2019
In reply to @struggler23 "I had an undiagnosed 3rd degree tear of my L calcaneal cuboid ligament (heel bone); so..." + (show)
@struggler23

I had an undiagnosed 3rd degree tear of my L calcaneal cuboid ligament (heel bone); so I walked around in severe pain, going from 1 specialist to another for 3 months before an orthopedist diagnosed both it and the CRPS ( then, 1995, more commonly known as RSD). Put me in a foot, ankle leg brace for 2-3 months, and put me on gabapentin.

Jump to this post

Unfortunately I have several other problems " "illnesses " that I take a lot of medications for, the gabapentin didn't work for me at all.

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