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Chronic Pain

First, understand it.

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We walk a mile in your shoes. WE CONNECT WITH YOU we listen, offer hope, support and accept YOU.

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Did you know that pain can exist on its own? Torturous, unrelenting and powerful enough to completely alter a person's life.

Time heals most wounds, but ultimately not all. Chronic pain doesn't need an injury or disease to spur it on, sometimes nervous systems malfunction and continue to generate pain signals after an injury has healed. This is a strange situation to wrap one's head around considering that most of us spend our lives understanding pain as a biological alarm system. Residual pain can be far more intense than the injury ever warranted and even magnify to consume an entire body. Scientists are only beginning to uncover the whys and hows of chronic pain. Without a cure, compassion from others is supremely necessary for a sufferer to survive, to grow and to love, in spite of constant physical pain.

hayley

The disability that I live with is like a sly assassin, it goes by many names. Reflex Sympathetic Dystrophy (RSD), Complex Regional Pain Syndrome (CRPS), Central Neural Sensitisation (CNS), Fibromyalgia or just simply chronic pain. As the agony goes on it becomes clear that changing the name of a sword does little to blunt the blade. Any worthy sword cuts swiftly from both sides and chronic pain is Excalibur-like in its ability. With the first strike comes the physical agony, the second brings the psychological repercussions and (just for kicks) chronic pain will run you through with befuddling social ramifications.

It turns out that "phantom pain" isn't all that phantasmic after all. Rather, phantom pain is actually a haunting of the nervous system; a physiological poltergeist that is able to play with very real synaptic signals. To a brain in chronic pain the ghosts of injuries past, or limbs no longer present, are as real as the recognition of current afflictions.

Imagine your nerves to be streams that carry information to pools that form your brain. If you hurt your thumb, pain signals rush along the stream that gets them to the alarm pool the fastest. For example, if that thumb is on a hot stove, the brain knows to recoil almost instantly.

Perceiving pain is one of the brain's highest priorities. It assumes that more pain equals more damage, which could be a threat to survival. It cannot differentiate between a malfunctioning nervous system and a healthy one, it simply perceives the signals it is sent. The more pain signals that rush along these information carrying streams, the wider and deeper they become. Like erosion in the earth, chronic pain signals deepen the streams into rivers.

The sufferer might experience spreading of pain and associated symptoms in other body parts. This spread is actually taking place in the part of the brain that perceives that body part, rather than the part itself. Revisit the water image; picture the little pool in your brain that is responsible for perceiving your left leg and then right next to that is a little pool that is responsible for perceiving your right hand. When the brain is flooded with pain signals, these little pools overflow and the water gets all mixed up. The brain isn't so sure anymore whether or not the pain that the person feels is coming from the leg or the hand, so it might start to perceive it as both.

Merging pools activate different pain streams, erode new rivers and flood the brain with further confusion. One of the most amazing things about the brain is its ability to adapt and change dependent on stimulation. As the signal deluge goes on, more and more parts of the brain are appropriated to perceive the incoming pain. Chronic pain is like global warming of the nervous system and the results can be disastrous.

Scientific research documenting the physiological changes in the brain caused by chronic pain is finally being recognised. Until now medical science was hindered by the assumption that the brain is like a machine with fixed parts, when in truth it is far more malleable and complicated than that. Expensive brain scans that are not yet readily available to the public can literally show how much of a brain is perceiving pain - an amount that increases over time spent in chronic pain.

Educating people about a condition that hurts so much but seemingly makes so little sense is an enormous challenge. People suffering chronic pain have long had to deal with being labelled hypochondriacs, fakers and attention seekers. Loved ones aren't immune to such assumptions; chronic pain has broken down marriages, torn apart families and tragically resulted in suicide for many victims.

As time passes, a person in chronic pain stops exhibiting the innate physical expressions that normally communicate pain to others. Without the grimaces and tears, it can be easy to start to ponder the existence and severity of pain that remains invisible. Many start to wonder if the pain is psychosomatic, both sufferers and their loved ones alike.

Some people harbour an illogical gap in perception when it comes to understanding the relationship between anxiety and chronic pain. Many assume that if a person has psychological issues to cope with then these are the source of their problems or somehow separate to their physical illness.

People are like jigsaw puzzles. Take a piece out and you don't have the whole picture. It's impossible to completely separate body and mind because a mind can't exist outside a body. Once a brain becomes flooded, it doesn't always accurately differentiate between stimuli and overexcitement is overexcitement. An increase in pain can influence an increase in anxiety and vice versa. To understand chronic pain, one must accept that there are both physical and psychological elements at play.

One of the most confounding aspects of coping with chronic pain is that the condition is completely unstable. The level of pain and incapacitation can fluctuate very quickly. Certain activities or weather changes can become known triggers, however a person can rarely be certain as to how severe the reaction will be. Symptoms can also multiply, exacerbate and occasionally (blissfully) recede at any time.

Planning a social life around such instability is a frustrating challenge that can crumble friendships into ruin. Have you ever had one of those friends that says they want to catch up but never actually commits to plans? That never calls you back? Perhaps one of those friends that is constantly cancelling on you at the last minute? Ever erratic, chronic pain can cause a person to mimic the actions of a flakey friend to perfection.

Many chronic pain sufferers report that one of the biggest hurdles they face is being misunderstood by loved ones. This is a wound that time can heal...with a little effort. Communicating your situation to friends and family is vital for any chronic pain sufferer who wishes to be understood (they aren't mind readers). Listening and learning is the essential act of a caring companion. Being able to understand the situation of a loved one in chronic pain will help to keep the relationship fruitful for both parties. Never underestimate the emotional healing power of the company of an honest friend.

The chronic pain sword might be out of the stone, but as yet there is no gallant knight with the expertise to wield it and conquer in the ongoing battle for healing. What we do have is enough knowledge to squash the misperceptions about chronic pain; to quell hurtful assumptions or accusations and give people the freedom to focus on healing. Used wisely, this graspable power can help to bring happiness back into the lives of many who feel as though they are stuck waiting for science to catch up.

 Hayley published this story in RAMP UP in April 2011. Thanks to RAMP UP for allowing her to re-publish here for our members and guests

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