Sep 21, 20213 min read

"Constant Burning Sensation, Could You Have Central Pain Syndrome Too?"

One of our readers was recently diagnosed with Central Pain Syndrome (CPS). This is a diagnosis new to us so we did some research and want to share our findings because it’s a potential diagnosis for any of us living with a spinal cord injury (SCI).

CPS doesn’t develop by itself. It only occurs following an injury to the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. CPS refers to pain that comes from the brain and not from the peripheral nerves, which are outside of the brain and spinal cord. For this reason, it differs from most other pain conditions.

The most common conditions that can lead to CPS include:

brain hemorrhage
a stroke
multiple sclerosis
brain tumors
an aneurysm
a spinal cord injury
a traumatic brain injury
epilepsy
Parkinson’s disease
surgical procedures that involve the brain or spine

People with CPS experience one or more types of pain sensations with the most pronounced being a constant burning. Combined with the burning may be sensations of pins and needles, pressing, tearing, aching, or brief, intolerable bursts of sharp pain. Some people also experience numbness. The burning and loss-of-touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. The pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes (usually cold temperatures).

CPS can be difficult to diagnose. Imaging tests such as a CT scan and MRI may be used to rule out other conditions that cause pain before a diagnosis of CPS is made. Your doctor will review your symptoms, perform a physical exam, and ask about your medical history. It’s very important to inform your doctor about any conditions or injuries you have now or may have had in the past.

CPS is challenging to treat. The method of treatment may vary depending on the cause of the neurological damage. Pain medications are commonly prescribed but aren’t always successful. Some people can manage their pain with prescription antidepressants or antiepileptic medications, such as:

amitriptyline (Elavil)
duloxetine (Cymbalta)
gabapentin (Neurontin)
pregabalin (Lyrica)
carbamazepine (Tegretol)
topiramate (Topamax)

Additional medications that may help include:

transdermal creams and patches
medical marijuana
muscle relaxants
sedatives and sleep aids

Things you can do on your own include:

keeping your stress to a minimum.
keeping your body temperature comfortable and stable
yoga
exercise
meditation
acupuncture
massage

In general, these treatment methods will reduce the pain, but they won’t make it go away completely. In most cases, CPS remains a lifelong condition. Through trial and error, you and your doctor can collaborate to find a combination that works best for you.

A primary care doctor will typically be the first doctor to discuss your symptoms and check your medical history and current health. Once certain conditions are ruled out, your doctor may refer you to a specialist for more testing and treatment. Specialists who treat or help manage CPS include the following:

Neurologist is a doctor who specializes in disorders of the nervous system, including the brain, spinal cord, and nerves. They’re usually skilled in treating chronic pain. You may have to see several neurologists before deciding which one can help you manage your pain.

Pain specialist is a doctor who has been trained in neurology or anesthesiology. They specialize in pain management and use various modalities to treat pain including oral medications and injections of certain medications into painful sites to relieve the pain.

Physical therapist is a professional who can help you reduce pain and improve mobility.

Psychologist - CPS often affects your relationships and emotional well-being. A psychologist or therapist will discuss the emotional issues with you.

CPS isn’t life-threatening, but the condition causes considerable difficulty for most people. Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Following are some organizations supporting CPS:

American Chronic Pain Association (ACPA)

P.O. Box 850 Rocklin, CA 95677-0850 Toll-free: 800-533-3231 Telephone: 916-632-0922 Fax: 916-652-8190 E-mail: ACPA@theacpa.org Website: https://theacpa.org/

Central Pain Syndrome Foundation (CPSF)

8760 State Highway 303 NE, #i Bremerton, WA 98311 Telephone: (360) 471-3631 E-mail: info@cps.foundation Website: https://www.cps.foundation/home

Pain Relief Foundation

Clinical Sciences Centre University Hospital Aintree, Lower Lane Liverpool L9 7AL United Kingdom Telephone: 0151 529 5820 Fax: 0151 529 5821 Website: https://painrelieffoundation.org.uk/