Monday, January 8, 2018

Central Pain Awareness

Image result for chronic pain 

CPS Awareness

A friend of mine posted an article about complex regional pain syndrome to help awareness with this neurological chronic pain disorder. Many suffering with these disorders frequently challenged each other to help educate the public.  I decided to share what it is like to live with another neurological chronic pain disorder that is very similar. 

Although it leaves one feeling very vulnerable to share these very personal things, if it helps just one person understood one of these horrific neurological chronic pain disorders and what people living 
with this deal with every moment of every day, I am willing to share what it is like. 

The Nervous System 

Many say they don't see anything wrong, you look normal. It's invisible, as are the many things your nervous system does-regulate breathing, heart beating, movements you don't think about such as digestion, lifting your arms, moving your legs, etc. you don't see the nerves for most of that either. But, that doesn't mean it's not happening.

When your nervous system is broken it can cause a lot of problems. 


CRPS and its wicked, evil step-sister CPS (Central Pain Syndrome) which some doctors consider one and the same but are different on where damage originates. Central is the brain and spinal cord, peripheral (CRPS) are the nerves that go out from the spinal cord. My neurologist at the University of Michigan that specializes in neurological pain disorders stated that they teaching physicians how to delineate the difference of pain disorders to give proper diagnoses for research purposes, finding proper treatments and hopefully, someday, a cure. 

"The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central pain syndrome may affect a large portion of the 
body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage. 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. Individuals experience one or more types of pain sensations, the most  
prominent being burning. Mingled with the burning may be sensations of "pins and needles;" pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain 
caused by a dental probe on an exposed nerve. Individuals may have numbness in the areas affected 

by the pain. Central pain syndrome often begins shortly after the causative injury or damage, but may be delayed by months or even years...” (NIH)

The location, type of pain and causes are different for everyone. As one having CPS caused by nerve damage along the spinal cord due to multiple cervical (neck) spine issues, it affects the nerves that impact the lower parts of my head, neck, shoulders, arms, hands, upper chest and back.

It Spreads

Neurologists warn (mine did) that when you have other injuries and/or surgeries this will most likely spread. Having multiple lower spine issues as well, leading to the need of having yet more spine surgery, even after doing all one can to NOT have the surgery because you're told the CPS most likely will spread to the lower body, leaves one at a lose, lose situation. Well, as the neurosurgeon said it most likely would, it did spread to the lower body from the mid back and affects everything all the ways down to the toes.

Nonstop Biopsychosocial Event

It's a biopsychosocial event affecting every area of your life, every single moment of every single day and night. It affects one physically, emotionally and socially. And as all the specialists you continue to seek for any help you can get will tell you, it will not go away, there is no cure. It got to the point I felt sorry for them having to tell me, "I'm very sorry, there is nothing we can do. You will have to learn to live with it."  There is no other medicine to help because I've already tried every one of them. What one is left with is what they call palliative care. 

"Palliative care is a multidisciplinary approach to specialized medical care for people with serious 

illnesses. It focuses on providing patients with relief from the symptoms, pain, physical stress, and 
mental stress of a serious illness—whatever the diagnosis."

This includes medications that only take the edge off - it helps you to get out of bed for parts of the 
day, go places maybe once a week if lucky, and do things you have to get done, all in small sessions to be tolerated. Thankfully, they give one a notch down on that pain scale from an 8-10/10, curled up in a ball, teeth chattering, shaking, barely able to breath and often vomiting, to an average of 7-8/10, 
only occasional vomiting, and a rare 6/10 where you want to scream, "I'm healed!" and start looking to go back to a much loved career! But, those moments, hours, (if your blessed to have them) are rare and usually end up leaving a person in bed for days after, as you take the opportunity to doing more activity, doing things that need done or places you want to go, which causes those already damaged nerves to be irritated and screaming back at you for wanting to have a life! But, you learn it's worth it to be able to do something, even if it's just going to the grocery store or sneaking out to pull a few weeds.

Many are unable to believe it, they say, "I just can't see it!"  Those suffering can't either, even though 

we live with it. We can't believe there's no end. It is unbelievable...

What Does It Do? 

A lot...when someone asks to explain it, it's too hard to explain it's just too much information. You have all kinds of different types of pains. Remember, the nervous system is damaged. You can have every pain sensation known to man at different times, as well as at the same time. There's no controlling it, no off switch.

Hyperalgesia-Heightened sensation to pain and things that cause pain that shouldn't. (Merriam 
Examples-things that shouldn’t cause pain, do. A light touch on skin. It sends shocks like being dumped in a bucket of ice water and sends the nerves screaming up the spinal cord and slams into the brain! 

Central sensitization is a condition of the nervous system that is associated with the development and maintenance of chronic pain. When central sensitization occurs, the nervous system goes through a process called “wind-up” and gets regulated in a persistent state of high reactivity.

A Few Examples 

Your whole body can feel like you stuck yourself in a light socket buzzing, jerking inside. You can be affected for hours with not being able to hardly move due to being almost paralyzed and overcome with this horrendous buzzing that can leave you panicking and wanting out of your body. But, that 
isn't possible to achieve...

Overwhelming Muscle Aches

Ever dance all night and when you lie down in bed exhausted and try to sleep your feet just throb! That is what it feels like to the muscles. Somehow the nerves send the messages you were out 
dancing...but you weren't. And it isn't just your feet affected. It's usually the body parts the damage 
originates from and along that nerve pathway.

The Simple Things

These damaged nerves affect everything one does, including very simple things like lifting a glass of water, cutting up a salad, any repetitive movements, such as filing ones fingernails, writing, typing, 
doing one's hair, etc.  Those are just some simple activities I myself find completely unbelievable.

Ever poke someone in the arm to get their attention? That leaves a person with central pain syndrome feeling like you stuck your finger all the way through their muscles and nerves into their bone.

Ever hug someone tight? That leaves a person with central pain syndrome feeling like they have been smashed all the way through their muscles and nerves into their bones. When they see a loving hugger coming their way they want to go running the other way.

Most people have had to have a root canal due to a severe tooth ache. That's a good way of describing yet another type of the many pains of central pain syndrome and one of the varying degrees of nerve pain. There are various types of tooth aches. Some you can ignore, some you cannot.

Remember what it feels like to try and adjust to icy cold water! It overtakes your whole body and takes your breath away. Everyone knows that feeling. With CPS that is the feeling one gets (although it is at varying degrees and can be unbelievably multiplied) when one has a necklace or bracelet on that is too heavy, a strap or elastic that's too tight, when you sit or stand too long in a position that irritates a nerve, or just for no reason at all...your nervous system just decides it wants to get your attention. Kind of like one’s own personal demon...but, sadly, prayers don't even work to get rid of that little bastard.

Just Push Through It, For Goodness Sake!

We've all done that! I told my doctor, “If I'm going to hurt, I might as well have a good reason!" He 
kindly told me I was hurting myself more and needed to learn not to do that, among many other 
enlightening things. Nerves don't like to be pushed, they push back.

Next time you prick your finger take that item you pricked yourself with and reprick it!!  Hold it in there and wiggle it around for a few minutes. That's a prick with CPS. The pain is multiplied and 
intensified. There’s no pushing through the pain!

Burning-when you burn yourself, burn that area again to try and feel that burn. All the way to the 

bone. It won’t go away! There’s no pushing through the pain!

Add the feeling of having your breath taken away by the extremely cold water (discussed above) along with the burn. Do that for a few minutes longer. That's a burn with CPS.

Charlie horses?-take a needle and stick it into that muscle! That'll make it better! If only...

Toothache? Poke it with a probe!

Please don't do that, my point is there's no pushing through this. The pain only intensifies and lasts longer. 

Those descriptions are only with certain pains it doesn't cover the pain just from repetitive activities like folding laundry, which can last for days in the neck down due to the cervical spine issues. 

I've probably already lost most readers after the first paragraph. Believe me it's a lot to take in. It's a lot to read…I'd like to be on my way myself. I only wrote this for awareness. If you hear of anyone that has a neurological chronic pain disorder I'm hoping you'll understand more about it.

Remember Spock and the Vulcan nerve pinch? It is a grip so deep that it takes your breath away and makes your muscles give out leaving them collapsing on the floor. It leaves you needing to throw yourself in bed, or on the floor, anywhere but sitting or standing! This is because your nerves won't allow your muscles to hold you up. And if you can't release those nerves soon enough, if you don't listen to your body, if you don't intercede with that neurological chronic pain disorders when that "take your breath away, cold  water sensation" discussed above occurs along with the other pains, it will send you into a "full body flare". 

 Image result for chronic pain fire

What Is A Full Body Flare?

This is burning nerve pain in your spine from moving your arms or neck too much, sitting or standing too long (or any other activity) that sets your spinal cord "on fire" in varying degrees of just needing to lay down to an all out "full body flare" that in seconds shoots up to your brain, out your arms and legs leaving you screaming uncontrollably, literally seeing flames and believing you will end up in a pile of ashes. This can last for an indefinite amount of time. It's different for everybody.  A bit unbelievable? Extremely! Especially to the one on fire! It leaves one gasping for air. It definitely lets one know that when these neurological episode start you need to stop what you're doing immediately 
do what your body needs.

I heard of a story of a mom whose little boy would have these episodes and would just start screaming and running while out playing in the yard. At first the neighbors thought he was being abused. But, after the neighbors learned what his problem was they all came together to help support this little boy and his mom any way they could. 

That's true community! That is so touching!

Dissected, Demeaned and Degraded

Writing things like this leaves one very vulnerable to being dissected, demeaned and degraded. Not writing it leaves one vulnerable to being dissected, demeaned and degraded. 

Having had neck pain for over 19 years before my first surgery causing a lot of other pains had left 
me hearing many things that others dealing with chronic pain report, "now what's wrong with you!? " among other things. It's been hard going to college while working, keeping a full-time very physical job, running a household and doing everything else life throws at you. But, when it gets even worse, it can change your life dramatically.

Statements Those Living With Chronic Pain Hear 

Image result for chronic pain"There's no reason you can't work. There must be something you could do."
"There's nothing wrong with you!"
"I just don't see it!"
 "It must be nice to be able to not have to work and lay around every day"
Never mind that you loved your career and all (most) of what you did and the people you worked with! 

"At least you aren't dying."  
"You're just a pill popper! Doctors just handout pain medication like its candy!"
"If only you would exercise and lose weight.”

There's many more, but I won't write them. Needless to say, those of us living with this and many other diseases dissect, demean and degrade ourselves enough already. 

Many can't believe it! We can't believe it either. When you look in the mirror you don't recognize that person looking back. As much as you try to deny and pretend it's not happening, it doesn't care about you or what you want or think. It's just going to continue doing what it does.  Every single moment of every single day.


What is very sad are those that don't understand why we can't do what we used to do. I had one experience where I waited to RSVP to a dinner until I knew for certain I couldn't attend.  When I declined the day prior I was accused of being rude and making the hostess feel as if she wasn't important, as if she were nothing. Mind you, this was a week before I was to have lumbar surgery and this person said she understood why I had waited. 

The fact is I never want to intentionally hurt anyone's feelings. I am unable to help those that cannot understand what I live with.  Some just are not able to empathize (understand). I grieve the losses of those relationships that have been hurt and angered by me not being able to do things or go places as I used to. I am really sorry for not being able to live up to what others expect. But being sorry doesn't make the pain any less when I get phone calls or emails telling me what they feel are horrid behavior on my part. 

However, I will focus on those dear ones that do understand as best they can and continue to invite me places and understand when I have to cancel, which, sadly, is a high ratio of canceling to attending. I will focus on those that continue to call me and send me messages with endearing words that light up my soul! I will focus on those that haven’t forgotten I am out here. I will cherish every single word of understanding and love of those that get it. I will grieve those that don't and move forward with the understanding that some just cannot get it.  


Me? I will focus on what I am told by my best friend!

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