Inspired Spinal Cord Injury Support Forum

wavewolf
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Chronic nerve pain Feb 23, 2015 17:04:21 GMT -8

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Post by wavewolf on Feb 23, 2015 17:04:21 GMT -8

Feb 23, 2015 16:59:18 GMT -8 DJ said:

Feb 23, 2015 9:51:35 GMT -8 wavewolf said:

I didn't think Baclofen was for pain at all, but when I stopped it entirely, pain was much worse. Not exactly sure why!

Perhaps the increased spasms caused more pain? I didn't think it was for pain as well!

Yes, and without any Baclofen, my muscles would sometimes just lock up and I cannot put strain on them, such as transfer weight. With Baclofen at low dose, I still get twitchy spasms, but the zingers that lock up the legs occur very rarely. So pain is less.

Hoea ra!

mimm
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Chronic nerve pain Dec 3, 2016 2:37:53 GMT -8 via Inspired Mobile

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Post by mimm on Dec 3, 2016 2:37:53 GMT -8

Feb 23, 2015 17:04:21 GMT -8 wavewolf said:

Feb 23, 2015 16:59:18 GMT -8 DJ said:

Perhaps the increased spasms caused more pain? I didn't think it was for pain as well!

Yes, and without any Baclofen, my muscles would sometimes just lock up and I cannot put strain on them, such as transfer weight. With Baclofen at low dose, I still get twitchy spasms, but the zingers that lock up the legs occur very rarely. So pain is less.

Hi I suffer with severe pain just brushing against my leg causes spasms ..
Im on baclofen ..
My lower back hurts like hell ,tried tens machine doesnt work ..everything I read says stretch so tried it but.omg im always worse after ..my head is pounding with all the stress and pain and lack of sleep ..

DJ Administrator STAFF Posts: 8,162 Post Likes Received: 2,829 Date Joined: July 2013 Injury: C6 - ASIA B Date Injured: June 2011 Member is: Offline Send PM	Chronic nerve pain Dec 3, 2016 5:26:18 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by DJ on Dec 3, 2016 5:26:18 GMT -8 Welcome mimm Sorry to hear about all your pain. What's your injury level? Do you take any meds for pain?

mimm
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Chronic nerve pain Dec 4, 2016 1:33:44 GMT -8 via Inspired Mobile

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Post by mimm on Dec 4, 2016 1:33:44 GMT -8

Dec 3, 2016 5:26:18 GMT -8 DJ said:

Welcome mimm

Sorry to hear about all your pain.

What's your injury level? Do you take any meds for pain?

Hi yes injury level.T10 T9 T8
With severe spastisity ..
I take baclofen and gabapentin.dyhydrocodiene ..
Its a nightmare ,canot lay down for too long ,sit for too long ..
My hips just lock up and cause severe pain in lower back and hips .

megatrig
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Chronic nerve pain Dec 4, 2016 2:52:48 GMT -8

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Post by megatrig on Dec 4, 2016 2:52:48 GMT -8

I'm not sure if it would work for the pain you describe but a Sacral Nerve Stimulator?
Before Apparelysed closes search on there as I posted a lot about them!
All the drugs have wiped me out without any benifit so personally I can't recommend any but I know others find them really helpful.
Medical Marijuana? Getting the right strain is the important ne there apparently.
It's such a hard one to live with and is draining!!!

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megatrig
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Chronic nerve pain Dec 4, 2016 2:55:33 GMT -8

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Post by megatrig on Dec 4, 2016 2:55:33 GMT -8

I've talked about this before an awful lot!!! You mention distraction as taking your thoughts away from pain also!
www.breathworks-mindfulness.org.uk
Mindfullness has become a buzz word recently. Correctly fitted into our lives it can be a life changer/saver!!!

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kilg0retr0ut Advanced Member Posts: 2,507 Post Likes Received: 1,862 Date Joined: July 2013 Injury: L4/5 Cauda Equina Date Injured: 7-15-10 Member is: Offline Send PM	Chronic nerve pain Dec 4, 2016 7:05:24 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by kilg0retr0ut on Dec 4, 2016 7:05:24 GMT -8 I believe the ketaminekitty has worked with this, maybe he will give us more insight.
	DJ and tj like this L4/5 CES

kilg0retr0ut Advanced Member Posts: 2,507 Post Likes Received: 1,862 Date Joined: July 2013 Injury: L4/5 Cauda Equina Date Injured: 7-15-10 Member is: Offline Send PM	Chronic nerve pain Dec 4, 2016 7:06:26 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by kilg0retr0ut on Dec 4, 2016 7:06:26 GMT -8 ketaminekitty
	L4/5 CES

califanna
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Chronic nerve pain Dec 4, 2016 19:46:34 GMT -8

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Post by califanna on Dec 4, 2016 19:46:34 GMT -8

Dec 4, 2016 2:52:48 GMT -8 megatrig said:

I'm not sure if it would work for the pain you describe but a Sacral Nerve Stimulator?
Before Apparelysed closes search on there as I posted a lot about them!
All the drugs have wiped me out without any benifit so personally I can't recommend any but I know others find them really helpful.
Medical Marijuana? Getting the right strain is the important ne there apparently.
It's such a hard one to live with and is draining!!!

Have you used medical marijuana yet? The dosage is key and it doesn't damage the liver. Just wondering if you have tried it and whether you have added CBD to your regimen for pain?

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ketaminekitty
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Chronic nerve pain Dec 29, 2016 6:08:18 GMT -8

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Post by ketaminekitty on Dec 29, 2016 6:08:18 GMT -8

Hi all, My injuries are C2-3 and down, a mess, multiple fusions, multiple pain modalities, Diagnosis L3 incomplete, Cauda Equina Syndrome, CPS. I have severe spasticity. IF interested I can provide a link to an overview of what I am. I had been suicidal for 10 years tried every pain protocol save deep brain stim. and then began Vipassana Meditation. It is worth noting I had meditated 40 years already. I have an intrathecal pump delivering baclofen, clonidine and midazolam. No pain help but manages the bone breaking spasticity.

Vipassana Meditation saved my life. after beginning to manage my own I attended UMASS Medical School and am certified in MBSR, however I do not find this to be a manageable nor sustainable practice. I also studied at UHT and have certification in Vipassana which I teach. Vipassana means insight and it is an unguided form of meditation.

My pain levels have somewhat diminished from a constant 10. I still have episodes where I am insensate from the pain.

There is pain and suffering. Pain is part of the human condition, suffering is optional. I do not minimize or trivialize pain, I have 3 near misses with self-termination.

I will answer any questions, I don't hit this board much other than to post images, part of my own self-care program (hope you like them)

My partner and I teach in person and via Skype.

My website is PathwayToMindfulness.com we teach how to develop a personal sustainable meditation practice.

As mentioned I will share my personal journey and any details you might care to know. PM or emails get my attention bollefen at aol.com
hope I haven't bored you

Love you all -ket

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kilg0retr0ut Advanced Member Posts: 2,507 Post Likes Received: 1,862 Date Joined: July 2013 Injury: L4/5 Cauda Equina Date Injured: 7-15-10 Member is: Offline Send PM	Chronic nerve pain Dec 29, 2016 6:15:09 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by kilg0retr0ut on Dec 29, 2016 6:15:09 GMT -8 Thanks Ket
	L4/5 CES

tetra
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Chronic nerve pain Dec 29, 2016 8:29:40 GMT -8

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Post by tetra on Dec 29, 2016 8:29:40 GMT -8

FYI- I emphasize Ket's ability to help people with severe pain. His writings open a door letting pain sufferers know the conditions are very real and that few doctors understand. Fewer can help and for many of us there is no help other than self-help.

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I step in the water, but the water has moved on...

leroymorris New Member Posts: 3 Post Likes Received: 2 Date Joined: January 2017 Member is: Offline Send PM	Chronic nerve pain Jan 5, 2017 1:25:29 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by leroymorris on Jan 5, 2017 1:25:29 GMT -8 Do you have any kind of lump near neck, swallowing problems, changes in the skin, earache, etc.? Because you are having severe pain. Please make sure that you go for proper treatments to cure it.
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Chronic nerve pain

Post by wavewolf on Feb 23, 2015 17:04:21 GMT -8

Post by mimm on Dec 3, 2016 2:37:53 GMT -8

Post by DJ on Dec 3, 2016 5:26:18 GMT -8

Post by mimm on Dec 4, 2016 1:33:44 GMT -8

Post by megatrig on Dec 4, 2016 2:52:48 GMT -8

Post by megatrig on Dec 4, 2016 2:55:33 GMT -8

Post by kilg0retr0ut on Dec 4, 2016 7:05:24 GMT -8

Post by kilg0retr0ut on Dec 4, 2016 7:06:26 GMT -8

Post by califanna on Dec 4, 2016 19:46:34 GMT -8

Post by ketaminekitty on Dec 29, 2016 6:08:18 GMT -8

Post by kilg0retr0ut on Dec 29, 2016 6:15:09 GMT -8

Post by tetra on Dec 29, 2016 8:29:40 GMT -8

Post by leroymorris on Jan 5, 2017 1:25:29 GMT -8

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