My Letter To Those Who Are Not Aware of Central Pain

Central pain syndrome (CPS) is a neurological disorder consisting of agonizing pain signals of many differing types all at once: burning, acid burning, freezing, shocking, aching, pins and needles, lacerating, crushing, tearing, stabbing, electric shock and spasticity. It has been characterized as the worst pain known to man. It is caused by damage to or injury of the Central Nervous System (CNS), which includes the brain, brainstem and spinal cord; its causes include but are not limited to, stroke, MS, epilepsy, Syringomyelia, head & spinal cord injuries, aneurysms, tumors and infections. It is estimated that millions of people in the U.S. suffer from CPS. It is aggressive, never ending and disabling, making normal life immensely painful and incredibly difficult. The medications and treatments used to fight it are very limited and highly ineffective. There is presently no cure.

In my case in particular, I was born with Chiari Malformation. With Chiari Malformation symptoms alone there's a lot of pain I have to endure including paresthesias and dysesthesias. Having a 
congenital disease that wasn't detected for 38 years it became more complicated that my own Cerebrospinal fluid was redirected to my spinal cord destroying it from inside out. I have a cyst or in Greek term is called "syrinx" in my spinal cord from C3-T7. That's  like a foot long. This condition is called Syringomyelia (from the word syrinx) which is very debilitating and it comes with even more complications and extreme pain and can cause paralysis. Some of the complications I suffer from are incomplete Spinal Cord Injury or Central Cord Syndrome, Central Pain Syndrome, Neuropathy, Autonomic Dysreflexia, Autonomic Dysfunction, Myalgia and Myositis, Radiculopathy, Cervical Spondylosis,Myelopathy, Spinal 
Stenosis, Brachial Neuritis, Gastroparesis, and Cervical-Thoracic-
Lumbar-Sacral Neuritis. 

This malady causes a different degree of pain unlike the pain that we all know normally. This pain is out of this world! I want people to know that I'm not weak and most of all I'm not making up and I'm not exaggerating my pain. It is real! At any given time I can have lacerating, crushing, stabbing, electric shock, tearing, burning, freezing and spastic pain. It is agonizing and when others ask how I'm doing, it is very difficult to smile and say I'm doing fine. At this point where I had been going through this pain for 18 years there are days where I just want to be in my room and not talk because everything that comes out of my mouth is negative if I had to say something at that point. Some people with Syringomyelia at age 50 prefer to be euthanized because they have endured too much pain.

The lower part of my legs down to my feet is painful 24 hours a 

day. I have feet that feels like they have no skin. Then acid was 
poured into them and the acid is constantly bubbling all over my 
feet. The pain in my feet is very intense, searing, piercing, blade-like slashing, pins and needles and it's agonizing. They're always cold as ice but covering them with blanket or a hundred sheets doesn't help, instead the weight of the blanket makes the pain 
worse. I keep a heating pad for my feet that is on for 24 hours. I have legs that feel like they have no skin in them and just a breath of air can trigger a lot of pain. I have hands that feel like they were hammered flat with the meat exposed just dangling, with violent raging pain. I have arms that feel like they're being pulled out of their roots, just dangling with no strength in them but are very heavy with their bones sticking out exposed with constant pain of different kinds including numbness, tingling, pins and needles, skin is being peeled out and is on fire. My whole back including my chest and shoulders are hard but spastic, feels like they're 
cemented but the pain is very deep that comes with numbness,lacerating, pins and needles that makes me feel nauseated. Not to mention the severe itchiness that causes my skin 
to peel from scratching. I have long ignored and forgotten about my 
stomach which becomes painful and bloated with just a touch  of clothing. I used to watch what I ate because it might hurt it and be bloated but later I decided to stop caring about what I ate because each time I swallowed food it would get bloated like I'm nine months pregnant and painful and would cause a lot of trouble for my stomach. Then people think I'm fat because of the bloating and edema. But I stopped caring about what people said. Many years ago I had to go to the backyard so I could scream because of 
the agonizing pain. I couldn't even describe it. I have buttocks that feel like it's broken into pieces and they're on fire. I have a neck that is constantly being ripped apart, their bones crushing with each other, lacerating and all kinds of pain that I just have to learn to ignore it. I have a throat  that always closes when I swallow that it feels like bone pushing on a bone each time I swallow. I have eyes that  are slowly getting blind, with unbelievable pain like slashing 
the whole surrounding with blade, the eyeball being pulled out of their socket constantly that I need to lubricate them almost every 20-30 minutes to try to soothe the pain. Because of damage to most of my Cranial nerves that the skin of my head, forehead and back of my ears are itchy like they have skin disease. My forehead that used to be shiny and fine now became wrinkly. Different cranial nerves control different parts of the head. Damage to Cranial nerve II or Optic nerve which connects the eyes to the brain is the reason for my eye problem. My right nostril has been swollen for almost four years now. I believe that's from the Maxillary nerve. The damage to Hypoglossal and Trigeminal nerve caused my tongue to atrophy. They quiver and wake me up at night. All of my teeth hurts because of the damage to Maxillary nerve, a second division of the Trigeminal Nerve which is Cranial nerve V. I can go on and on but I won't because I can't stop. 

This is not to complain. I want people to be aware. I've been fighting this battle for 18 years. Although not too many can be sympathetic because it's all invisible. Only God knows what I suffer everyday. One person told me I look normal  and why do I need help? Some say I should not complain because I can still move. Sometimes you have to forgive me when without thinking I tell you what I'm going through. I think it's easy to complain because it's constant. And sometimes because people don't see 
what's wrong that I tend to let them know. Which is not good.

I want people to understand that with a C3 injury, a person looses the use of their trunk, arms and legs and becomes bedridden. I have been fighting paralysis for years now. My prognosis was I would 

have been paralyzed by 2010. I lost the use of my trunk and my stomach that the easiest and most comfortable position is to lie 
down. Not because I am lazy that I always want to lie down.

Please understand that I just look normal on the outside, inside I'm suffering from debilitating pain and a lot of dysfunction. If you saw me being able to do one thing it doesn't mean that I can do it again. It's not always the case. It might take me another year to be able to do it again. It could take months or even a year for my muscles to recuperate after using them. I take a lot of medication to block my pain in order to help me function. 

I depend on you ~ people who are able bodied ~ for many things. 

But most importantly, I need you to understand me.