When a person is sick, a cure cannot be suggested until the illness is properly diagnosed. For example, more than 2.1 million people worldwide have been diagnosed with having multiple sclerosis. Though there is no known cure, a patient may be prescribed the wrong treatment if wrongly diagnosed. With the large number of individuals that are affected with multiple sclerosis, what is more alarming is that there is another disease that is responsible for affecting the central nervous system that is more common than multiple sclerosis but goes undiagnosed.
This rarely diagnosed disease, Central Pain Syndrome, is a neurological condition which is caused by dysfunction that directly targets the central nervous system, which includes the spinal cord, brain and brainstem. The disease affects individuals who have experienced or currently have spinal cord injuries, strokes, brain injuries, epilepsy, multiple sclerosis, limb amputations, Parkinson’s disease and brain tumors.
Symptoms may not occur for months or years after damage to the central nervous system or injury. It causes chronic pain for those who suffer from the disease. HuffPost Live featured on Thursday the stories of individuals whose lives have been affected by CPS in recognition of Rare Diseases Day.
For Louise Mowder, she began suffering from CPS following a stroke that caused an injury to a spinal path to her brain. Though CPS didn’t impact her by causing a loss of sensation, it caused her to feel “every sort of pain sensation known to man all at once, all day.” Mowder is the founder of the CPS Foundation and told HuffPost Live that symptoms for the disease have only begun to be categorized within the last ten years.
The issue becomes problematic for patients as since there are very few doctors that can diagnose symptoms of CPS, Mowder said what happens is a lot of victim-blaming takes place. She said, “People go in and they complain about essentially feeling like they’re burning, freezing, electrical stab pains all day long all the time, and they’re told there’s nothing clinically that we can find that’s wrong with you,” she said. “You’re either drug-seeking or you’re crazy.”
From a doctor’s standpoint, there are other issues that cause problems in diagnosing CPS. Dr. Forest Tennant, who specializes in pain management and CPS, told HuffPost Live what part of the problem is. According to the doctor, the problem is there has been a lack of resources and manpower made available to put toward understanding the disease.
While the disease is not diagnosed as frequently as it should be, symptoms of CPS are characterized by a mixture of pain sensations, the most common being a constant burning pain. This steady burning sensation can, at times, increase due to light touch. The change in temperature, most often to colder temperatures, causes an increase in pain.
Some symptoms differ with patients as there have been those who experience a loss in sensation in affected areas, mostly on distant parts of the body such as in the feet and the hands. Also, some may experience brief, intolerable bursts of sharp pain.
Unfortunately, pain medications for those suffering from CPS often provide little or no relief. There have been cases where certain anticonvulsants and antidepressants can be useful in treating the disease.
The best recommendations doctors can make is that those who suffer from CPS be sedated as well as the nervous system should be free from stress and kept quiet as much as possible.
CPS Sufferers Not Alone
Help raise awareness for CPS (known as many other names as well, such as MS pain, Thalamic Pain Sydrome, Centralized Pain, Central Sensitization; often fibromyalgia can actually be CPS, or it can develop into CPS down the road. CPS is not a rare disease; rather, it is rarely known. I just learned that CPS is more common than MS, so it is indeed *not* rare!
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