I have entered the New Zealand Pain Service, where an interdisciplinary team is working with me to find some new ways to manage my pain and hopefully improve my quality of life. I am writing this reluctantly as I have been asked to explain my pain and describe what "normal" feels like for me. This is a part of the process and so I figured I could share it on my blog, so that if there are others out there, like me, you will know that you are not alone.
I have lived with pain most of my
life. For years I have had differing medical
opinions, hypochondria, fibromyalgia, nerve pain, chronic pain, etc. The latest suggestion is that I have CPS.
Central Pain Syndrome
CPS is a neurological condition caused by damage or malfunction in the Central Nervous System (CNS) which causes a sensitization of the pain system. The extent of pain and the areas affected are related to the cause of the injury, which can include mild car accidents, trauma, spinal cord injury, tumors, stroke, Multiple Sclerosis, etc. Pain can either be relegated to a specific part of the body or spread to the entire body.
Central pain syndrome is characterized by a mixture of pain sensations, the most prominent being a constant burning. The steady burning sensation is sometimes increased by light touch. Some people prefer body length heating pads which sometimes help a little. 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.
Burning pain is the most common sensation, but patients also report pins and needles, pressing, lacerating, aching, and extreme bursts or constant sharp or unremitting excruciating pain. Individuals may have reduced sensitivity to touch in the areas affected by the pain.
I know this all sounds awful but
to me this is just a normal day. I don’t
like it, I don’t want it but I accept it and get on with it. I shall now take a moment to pontificate,
please imagine the violins playing…
Central Pain Syndrome
CPS is a neurological condition caused by damage or malfunction in the Central Nervous System (CNS) which causes a sensitization of the pain system. The extent of pain and the areas affected are related to the cause of the injury, which can include mild car accidents, trauma, spinal cord injury, tumors, stroke, Multiple Sclerosis, etc. Pain can either be relegated to a specific part of the body or spread to the entire body.
Central pain syndrome is characterized by a mixture of pain sensations, the most prominent being a constant burning. The steady burning sensation is sometimes increased by light touch. Some people prefer body length heating pads which sometimes help a little. 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.
Burning pain is the most common sensation, but patients also report pins and needles, pressing, lacerating, aching, and extreme bursts or constant sharp or unremitting excruciating pain. Individuals may have reduced sensitivity to touch in the areas affected by the pain.
Yes, I have pain all the time, it
is only the depth that varies… but everyone has a cross to bear and my burden
is still lighter than others. I hate to prattle
about pain. I prefer not to adumbrate on how it feels or indeed how I
feel. There is no point. It is difficult and frustrating to hear someone
you love constantly complain about something that you are helpless against.
If you want to show you care, distract
me, talk about something else, or simply say, “Hey, can I get you something?” That will suffice. I’ll let you know if I am really having a bad
day and if I do, then take me seriously and give me some time and space. I hate to validate my pain, I feel like it
gains power if I do.
How it all began…
I have been in the medical system
for spine/nerve pain in different forms since I was about 15. I was in a MVA that resulted in severe whiplash;
I had torn muscles and damaged tendons. My neck bothered me right through high school
and I was often in a hard neck brace.
In my
early 20's I fell in a shopping mall; herniated a disc at L3, L4 and ruptured
the one below at L4, L5. This was treated conservatively until we decided to
start a family. I had spine surgery in
1996, laminectomy and discectomy and managed to have my 2 beautiful girls with
acceptable pain, via C-section.
In
2002 I was rear-ended in another MVA and that is when the real trouble began.
Pain became my constant companion. I knew it was time to seek help when I
looked at my pain killers and wondered how many would stop the pain
forever. I have since had a fusion and an
additional “maintenance surgery” to replace moving screws.
I was okay from 2005 to 2008 when I fell on the
rocks while walking my dog on the beach. Since then structurally there is
nothing to be seen, but pain has just been ramping up and medication does not
seem to help much, or for long.
Most of the time I feel as though my bones are made of
ice. My muscles and tendons are wound too tight and nothing loosens them
up. I can’t stand bright light and loud
noises. Lately I have pins and needles
and a constant burning between by shoulder blades; this is coupled with a
horrible sensation that is best described as a mouse running under my skin.
I
have debilitating headaches aggravated by bright light. I get irritable and grumpy and need a quiet
place to retreat to, heat helps a bit. I
ignore my pain until I can't and then I surrender to my bed for a re-charge.
Sleep is elusive and when I turnover in bed, my sternum feels like is tearing
and splitting apart (can’t hold my ribs together anymore).
I have scalp itch and so seem to scratch my head like a kid with lice. I am aware of it and so try and make it look like a casual gesture... don't think it works. I also have stupid hot flushes (face, neck and chest area) that I cannot control, it really does not mean I am shy or embarrassed. My skin becomes hot to the touch, red and inflamed, this comes and goes without me doing anything and is really frustrating.
I manage to work full time and am determined to stay as healthy and independent for as long as I can. I live for the good days and the things that give me true joy and or purpose. I believe it is easier to smile and wave than lie down and accept defeat!
