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Living with Intractable Pain

By Lynette Shier, Guest Columnist

I am a true intractable pain sufferer. I got my condition over 30 years ago when a drunk driver in a van slammed into me while I was riding on the back of a motorcycle. I was 18 years old.

I should have died in that crash, but survived. At first, I was convinced it was a miracle and a blessing. I feel entirely different about it now, as the CDC opioid guidelines have led to many of us losing the only form of pain relief that works.

Unlike chronic pain, which can be a pain that lasts more than 3 months, people who have Intractable Pain Disease have a constant debilitating pain that doesn't go away. There is no surgery, procedure or medication that cures intractable pain. This type of pain is often unacknowledged, allowing it to go untreated or under-treated

I have contacted my state medical board and went to a public meeting to see if exemptions can be made for those of us who suffer from intractable pain. I also contacted the CDC to bring attention to this issue, only to be told I should see my doctor.  

My condition goes beyond anything a human being should be able to live with. I had multiple injuries in that crash, including my left leg being torn to shreds and amputated at the scene. I also lost two inches of femur (thigh) bone, shortening the stump that is left.

My pelvis had what doctors call a "vertical shear fracture” – it was completely broken from top to bottom, and essentially split in half. The surgeon said my left hand was crushed into "a million pieces." My arm was broken just below my shoulder joint.

LYNETTE SHIER

I lost three-quarters of the blood in my body and was well on my way to the other side, but they flew me to a trauma center and performed 15 hours of emergency surgery, along with blood transfusions. They drilled holes into my hips, placed large pins into them, and then strapped me into a vice that pushed my pelvis back together until the fracture healed.  

I was in the hospital for 3 months and in physical therapy for years. I have lived with intractable pain ever since, raising children and working at jobs that even a healthy person would say are physically challenging. I couldn’t have done it without pain medication.

My body eventually began to give way to other complications. I now have bursitis, tendinitis, arthritis, neuropathy, degenerative disc disease, scoliosis, and root nerve impingement. My body is so crooked that I cannot walk correctly. I had to quit working in 2009.

After all these years of taking pain medication for my increasingly degenerating conditions, I need much higher doses than your average person can take or a physician would normally prescribe. This has caused me to be in a constant state of torturous pain and agony.

I have considered ending my life merely to end the pain a few times, but I cannot do that, as I am a fighter and will not give up that way.  

This is a travesty, and no human being should feel they need to do that to end their suffering when it can be prevented with proper treatment with pain medication.

If a patient commits suicide to free themselves from intractable pain, that should be considered a criminal act by the doctors who deprived them of medication and those who make the rules and guidelines at the CDC and the DEA. It is murder in my eyes.

There is no reason they can give me, and they have tried, that excuses the suffering they are causing people by taking away the only thing that brings them relief and makes them feel human. I'm not talking about junkies that are trying to get a fix. I'm talking about true intractable pain for which there is no shot, surgery, miracle procedure, or non-opioid medication that works, and the only thing that gives some relief is opioid medication.

No one should suffer from that kind of pain on a constant basis, and no one should be denied proper care for this condition. It is inhumane! If we had cancer or were terminally ill, they would have no problem giving us as much as we needed to keep us out of pain because its considered inhumane to allow suffering. Yet the CDC guidelines are doing just that, reducing quality of life and increasing human suffering.

They do not tell you that studies have shown that severe pain can kill you. It keeps your body in a constant state of stress, wearing down your body, organs and mind.

30 Years of Opioids Without an Overdose

The overdose statistics they keep are also not correct. A pain patient may die from a heart attack or stroke, but if they find opiates in the toxicology report they could classify it as an overdose, even when the patient has been taking opioid medication appropriately while under a doctor's care.

I have been taking pain medications for over 30 years, at doses that a normal person would probably overdose from, but I have never overdosed in my life. I am still under-dosed, as fear has taken over physicians.

This has made me housebound. I don't even want to get up and go to the bathroom, as I know it will cause me pain. It takes everything I have to get up every day, put a smile on my face, say a prayer, and do very limited things in my home. Just taking my dogs out or limping from my bedroom to the kitchen to get something to drink takes the life out of me. It's misery beyond what I would ever wish upon my worst enemy.

They worry about addiction. Well, if there is no cure for this condition and I'm to be in pain for the rest of my life and need medication for any kind of relief, what difference does it make if I'm addicted?

Someone has to do something about this, and by someone I mean ALL OF US WHO SUFFER! And all the physicians and pain specialists who know it is cruel and wrong.

I am attempting to start an intractable pain movement to bring more attention to us. Right now, there are too many different advocacy groups, websites, blogs, and videos. I see so many people out there who suffer and try to get their story out, but in so many separate places. I feel if we all came together in one place, maybe we could bring attention to this horrible situation and get things fixed.

We cannot just complain on these forums. We must show them what this is doing to us and our families. Stand with me and let’s fight for intractable pain relief. Make the CDC deal with this correctly before we all die of pain.

If you’d like to know more about living with intractable pain, please watch my video.

Lynette Shier lives in New Mexico.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

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Lynette Shier lives in New Mexico.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.