1. < Stroke & Cerebrovascular Diseases

Central pain syndrome

Posted by irishnanny3 @irishnanny3, Nov 1, 2023

I have central pain syndrome as result of 2018 ischemic stroke caused by undiagnosed PV. Nothing eases the constant pain that radiates on the entire left side of my body. No medicine,
medical marijuana, acupuncture, etc
has any effect in the burning, stinging
constant pain Appreciate any suggestions

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irishnanny3 | @irishnanny3 | Nov 4, 2023

Thanks for “hug”, Matthew
I’ll keep researching

REPLY
Scott R L | @scottrl | Nov 4, 2023

All I can say is, I too had a stroke in 2018 and have been tormented with pain ever since, through my whole body. It's like the stroke broke some regulating pain meter; now all pain is intense, all the time.

It has lessened over the years, but it still makes me question the value of life.

Lately, though, knowing that it's an actual syndrome is helping me cope. I'm trying some self-hypnosis types of actions to modulate the pain. Seems to be helping, at least so far.

REPLY
1 reply
irishnanny3 | @irishnanny3 | Nov 4, 2023
In reply to @scottrl "All I can say is, I too had a stroke in 2018 and have been tormented..." + (show)
@scottrl

All I can say is, I too had a stroke in 2018 and have been tormented with pain ever since, through my whole body. It's like the stroke broke some regulating pain meter; now all pain is intense, all the time.

It has lessened over the years, but it still makes me question the value of life.

Lately, though, knowing that it's an actual syndrome is helping me cope. I'm trying some self-hypnosis types of actions to modulate the pain. Seems to be helping, at least so far.

Jump to this post

Sorry to hear that, Scott

Central pain syndrome should only affect side of the body opposite side of brain where the stroke occurred. Feel terrible for you. One side is bad enough

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irishnanny3 | @irishnanny3 | 3 days ago

Several weeks after a stroke I was diagnosed with central pain syndrome
Entire left side of my body feels constant stinging, burning pain, often accompanied by cold sensation
Running out of options for treatment
Neurologist, pain management Dr, physiatrist all have persisted in searching for way to help, to no avail
Currently waiting to hear from Dr who is reviewing my records Stroke was in 2018
Also being treated for osteoporosis
Hanging in there, but so frustrated
Have polycythemia vera too.. which doesn’t cause pain, thank God
Thanks for any suggestions

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | 2 days ago
In reply to @irishnanny3 "Several weeks after a stroke I was diagnosed with central pain syndrome Entire left side of..." + (show)
@irishnanny3

Several weeks after a stroke I was diagnosed with central pain syndrome
Entire left side of my body feels constant stinging, burning pain, often accompanied by cold sensation
Running out of options for treatment
Neurologist, pain management Dr, physiatrist all have persisted in searching for way to help, to no avail
Currently waiting to hear from Dr who is reviewing my records Stroke was in 2018
Also being treated for osteoporosis
Hanging in there, but so frustrated
Have polycythemia vera too.. which doesn’t cause pain, thank God
Thanks for any suggestions

Jump to this post

Hi, @irishnanny3 - I'm really sorry to hear you are running out of options for treatment of the central pain syndrome that was diagnosed several weeks after your stroke. It's good to hear that your neurologist, pain management doctor and physiatrist all have persisted in searching for ways to help.

Which of your doctors are currently reviewing your records, irishnanny3? What is this doctor looking for in his or her review?

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1 reply
irishnanny3 | @irishnanny3 | 2 days ago
In reply to @lisalucier "Hi, @irishnanny3 - I'm really sorry to hear you are running out of options for treatment..." + (show)
@lisalucier

Hi, @irishnanny3 - I'm really sorry to hear you are running out of options for treatment of the central pain syndrome that was diagnosed several weeks after your stroke. It's good to hear that your neurologist, pain management doctor and physiatrist all have persisted in searching for ways to help.

Which of your doctors are currently reviewing your records, irishnanny3? What is this doctor looking for in his or her review?

Jump to this post

Hi Lisa
Thank you for your concern
My physiatrist at Kessler
recommended a pain management Dr whose name he was given by a colleague at Sloan. The
Dr reviewed the records my Dr sent and I was just given an appointment for August
My physiatrist said that this Dr has treatments that aren’t available to him
He feels it’s worth at least a consultation. I’m cautiously
hopeful

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