Those with spinal cord injuries, who have multiple sclerosis, or who’ve suffered a stroke are also often diagnosed with central pain syndrome.
It’s a harsh reality for people with debilitating conditions like spinal cord injury or stroke.
Many of them live with chronic, excruciating pain.
Kellye Lynn reports research is underway in Baltimore which could someday end the suffering for patients with central pain syndrome.
Patients who have the condition say it feels like being stabbed with a thousand burning knives.
Arthur Culiner wound up in a wheelchair seven years ago after falling off a ladder.
Since then he’s lived with terrible, tormenting pain.
“Well the most intense pain is around my waist and the best way I can describe it to you is the worst suburn you could ever think of,” he says.
It’s a form of pain experienced by more than 250,000 Americans.
Central pain syndrome affects more than 50% of spinal cord injury patients, 30% of multiple sclerosis patients, and 10% of stroke patients.
Dr. Asaf Keller of the University of Maryland School of Medicine says what patients feel is often, “Burning or pressing pain. It can be anywhere in the body, or it can be below or above the site of injury.”
“Nothing will stop the pain. There’s nothing I can swallow or put on it,” adds Culiner.
Although there are no effective drugs or treatments for central pain syndrome, researchers at the University of Maryland School of Medicine have uncovered crucial information about the condition.
An area of the brain called The Zona Incerta appears to experience a gradual loss of activity in patients with a spinal cord injury or other disorders.
When this part of the brain malfunctions, too many pain signals reach other parts of the brain causing the burning discomfort.
“Now that we have identified a potential mechanism, we can begin to target therapies in this abnormality in brain function,” adds Keller.
Treatments that could prevent changes in the brain associated with the condition stopping the pain and making life bearable for people like Arthur.
“I hope it works. I hope it’s successful. I’d like the help if I could,” adds Culiner.
A treatment for central pain syndrome can’t come fast enough.
An epilepsy drug is also being studied as a potential treatment for central pain syndrome.
Kellye Lynn
Reporting for WJZ13
Hello, I have been in pain for 8 years with central pain syndrome. It’s my lower hips and legs to the middle of my shins. I have been in bed all these years because any movement makes it worse. Please consider me for any trials you might have, I am a 51 year old female, that now is very obese, due to lack of exercise.I have nothing to lose but alot to possibly gain. I live in the eastern part of Washington State. If any doctors in Spokane, WA read this and think they can help me, please do. thanks Renee’ e-mail is reneemace@aol.com
I have had central pain syndrome since the symptoms of my post polio syndrome exacerbated five years ago. Whether or not the pain is due to the post polio or something else unclear. The pain is excruciating. It encompasses all my extremites and to a lesser degree my neck and back, and my entire trunk. Even my head feels pressure when it is at its worst, but the pressure is more like it is pressing from the outside in rather than the inside out.
The pain in my feet is complicated by the ever present numbness and tingling from the post polio. In fact, this is where my pain began, in my feet. It started on the soles of my feet and spread to the top of them, then up my legs. In my entire body, the pain in the distal portion of my legs is the worst. Followed by that is the pain in my hands, which is similar in nature to the pain in my feet, but not as severe.
The pain is a deep, heavy ache. Sometimes it feels like my toes have just been cut off the pain is so intense. It is also a burning, like being boiled in oil and put in the desert sun to dry. It is a pressure, and sometimes it hurts just to have air blow over my skin.
The pain has taken over my life. I am disabled from the post polio and my legs have become very weak. My left foot has become partially paralyzed, and it is certain I will have more weakness to come. I live alone as my husband left me last year. He walked out on me one day and I haven’t seen him since. I was unable to attend court because of my disabilities and attended by phone.
Pain has become who I am. I am living in a new town, and have met a few people in church, but that is the only place I go other than to doctor’s visits. I am essentially a shut in. I can barely get out of bed in the morning. None of my family will let me move in with them. I have a very dysfunctional family, I have discovered. They will not acknowledge my disability, and do not want me to disrupt their way of life by moving in with them.
I can’t even stand and cook most days as it not only saps my strengths and brings on severe exhaustion, it is also too painful to even stand some days. I have an electric wheelchair but do not have an accessible home or vehicle. This means I cannot go out anyplace because I can’t walk long distances. I use a cane to walk short distances, but only very short distances. Because I can’t afford a wheelchair van, I can’t go anyplace except to the doctors, church on Sunday, and to the grocery store as they have scooters to ride in.
I recently reached my limit on my Medicare Prescription Insurance (AARP) and now have to pay cash for the entire prescription. I take Embeda, Oxycodone, and Neurontin. Along with my other medications, this will be about a thousand dollars a month. I only get 1400.00 a month in combined social security and alimony. I just went to the drugstore today and found out I had to pay 477.00 for the Embeda today. Fortunately, I have a few thousand dollars from my divorce settlement. I received 6000.00, and spent 2000.00 on appliances (I had none) and a few hundred on new clothes (I put on 50 pounds in the past year due to being bed bound a great deal of the time and eating too much for a few months when I was very stressed and depressed over my husband leaving me, and my old clothes are too tight). I also gave each of my kids some money). I have a little over 3000.00 left and I guess I know where it is going. I was only on the Medicare insurance five months before I reached the limit to where I now must pay full price!! I don’t know what I will do next year! I won’t have a buffer next year! I am told that here in the state of Vermont that 1400.00 a month income is over the limit and I am not eligible for Medicare! I think I will move to a different state next year!
My family has really let me down. My husband has let me down. My body has let me down. I have lost my home (as I had to move when my husband left me), my husband, my health, my family, and have no real close friends. I am essentially alone in the world. disabled, unable to care for myself properly, and in excruciating pain a good deal of the time. Yet I am not eligible for help, am emotionally and mentally overwhelmed and this makes it difficult for me to understand what I need to do to find help. I think I am going to have a breakdown if things don’t change.
For many years I have suffered from severe back pain that sometimes i could not move. I practiced judo for more than 8 years and back pain took me from all kinds of physical activity. A year ago, my pains have disappeared thanks to this all-natural treatment that I found online, where anyone can make at home. At least that cured me completely. I hope it works for you as it did me. http://www.backpain-relief-4-life.com