I begin by telling you about my background with chronic pain - I am 48 years old - when I was 12 I had severe S shaped scoliosis - a 85 degree curve on top and 78 on the bottom - I had 9 major surgeries as a result stemming from harrington rods that never fused, other rods that were drilled into my vertebrae, many diskectomies, laminectomines and fusions in cervical (C4-6), entire thoracic is fused, two lumbar fusions and pedicle screws in sacro lumbar - and cages/plates in cervical collar.....

After many years of being an athlete and exercising at competitive levels everyday - many other problems have arisen - arachnoiditis, severe stenosis throughout entire cervical and lumbar spine, severe arthritis, many impinged nerves etc, etc, etc...

I have had the pain pump installed and removed three times - it is now removed permanently as of last year. I have had SCS - which works through the external TENS but not internally - and only temporary - I have been on every class of drug including but not limited to NSAIDs, drugs for depression that are used for pain (have not suffered from depression), muscle relaxers, seizure meds (I do not have seizures), anti convulsives, neuropathic drugs like neurotin, Lyrica etc, every narcotic at every dosage known to man, you name it I have not only tried it but tried to work through horrific side effects and a tendency to be allergic to everything....

I have been on an on-going physical therapy on land and water (regimines (which I highly recommend to everyone in chronic pain from any source on their bodies), accupuncture several times (meaning for more than six months at a time), massage therapy, meditation, pain psychology, biofeedback etc. I was hoping to get into hypnosis for pain but I could not be hypnotized - bummer. (This is known to work very well for some people.)

I have had every conceivable procedure, keeping up with the technology of the times since I was 12 - which is about 38 years worth of procedures each year - epidural injections several times a year since I was 12 with no effect, myleograms, discograms, nerve blocks, trigger point injections, nerve ablation procedures and the list goes on and on....pain pumps, SCS installation and removal, TENS unit, ice and heat etc.

The reason I wrote all this is because I am now without the pain meds from the pain pump which I had from 2003 - 2011 and I got as high as you could go on the narcotic in the pump(there really is not a "highest" level just guidelines in my state.) While I had the pump I was on 60mg of Oxycontin and 40 mg oxycodone each day -

Due to severe reactions to narcotics I had to reduce and I am now on 30 mg of Oxycontin and 50 mg of oxycodone each day and going down weekly if possible -

My point is that somehow my body keeps adjusting - based on the pathology of my spine - doctors are surprised that not only am I able to walk - I exercise each day and do physical therapy daily and I am highly functional for the amount of pain and stiffness and nerve pain that I have......

I am finding that you can "perceive" pain differently - it takes a huge amount of discipline and dedication and working through the pain - but it is totally amazing....

As I have been on this journey I ran across recent discoveries that show that people suffering from chronic pain have a brain disease - this has been proven over and over in clinical trials that highlight the brain in chronic pain patients....

Chronic pain is NOT a symptom it is a brain disease. And the brain can rewire itself - just like nerves can grow back if diseased or ablated - the brain is capable of doing the same thing....thus allowing people with stroke, blindness, deafness etc to train the brain to work differently to help them.

This means that people in chronic pain - can retrain their minds as to how they perceive pain - and ultimately - control it better or totally ( I am hoping) by changes in environment, brain exercises, meditation etc.

They do not know yet exactly how to rewire brains in humans with chronic pain - but I can tell you from experience.....my personal journey - that something fantastic is happening - to allow me to continue to function, dare I say function better, on less and less pain medications and with less pain.

It is work looking into - the key words would be neuroplasticity, brain, neurons - if you want to start learning about what's been happening recently in science as it applies to all of us....google these words and start reading....

You may get some ideas that work for you on how to cope with pain in different ways -

It is interesting that Buddhists monks are able to control their minds through meditation and contemplation daily exercises - and totally block out pain - meditation was very difficult for me to get my head around - and it is still difficult for me to do daily - but the benefits not only help my chronic pain but all aspects of how I deal/cope with life.

Hope someone can get some help from this information.

I pray that everyone in pain can through perseverance find the help that they need even if it comes from within!

Kelli from WIS

Hi Im Catherine, God bless you, you have been through so much. Life doesnt seem fair does it. Id love to talk to you on the phone I have had Burning Mouth Syndrome 6 months feels like Im dying Thanks **

My email address is wisdom3_1@hotmail.com - email me and maybe I can help.

K in WI

Hi Kelli - thank you for your post!! I would love to talk(email) with you too as we are on similar paths... I have dystonia (neck, arms, hands, left leg), involuntary muscle spasms with pain involvement... I was diagnosed nearly 20 years ago, I am 55... I did a lot of sports in my life: track, rowing and catamaran racing which came to a screeching halt... I've been on mind numbing medications for the spasms and narcotics for the pain and I always believed that I can retrain my brain to deal with all the symptoms... it requires a lot of discipline and support... at the moment I am (trying) to get off the pain meds (Opana); I receive botox injections for denervation of the offending muscles but there are so many muscles involved I receive very high doses and started creating antibodies, in other words it's not working anymore and the nerve pain is debilitating... I found that yoga, meditation and water therapy is quite helpful, my doctors are surprised that I'm walking but it is an ongoing battle and it is wonderful to find kindred spirits here in this forum...***
peace and wellness, (spaz)Atti

spazatti,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. There are great number and caring fellow members here, you will see we are supportive and relaxing place. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thanks for your post! I had severe trauma to my knees 7.5 months ago (riding a 150cc scooter and someone turned left in front of me, my body and scooter t-boned his SUV and bounced off). I am still in a lot of pain and recently my pain has spread to my lower legs/feet and my glut area (the bones where the nerves run through). I have pain standing and walking from my knees, and the two hip intersection bones when sitting. My PT recommended a book "Explain Pain" and it makes a lot of sense, exactly what you are saying, the brain needs to be retrained. My butt should not be hurting, there is no injury there, but because of the physiological changes to my nervous system because of the prolonged acute pain, the nerve signals are amplified and the brain thinks it needs to signal pain. It is worrying me that I am having this "pain spread", but I am trying to stay calm because I know the stress will only make it worse. I am hoping that maintaining an exercise regimine will help. It sounds logical that meditation should help and I am going to try that.