Pain Is it real or just in my head

As I awake each morning my body reminds me of how damaged it is because the pain never seems to go away. But the question I continue to ask myself is, Is my pain real or just in my head? I ask myself this because I have been told repeatedly that, your brain controls everything and you have the ability to control your brain. Well, when you have a physical condition that creates pain, how does that constitute that your pain is all in your head?

Over the past few years, I have been to many doctors which deal with my physical conditions of incomplete spinal cord injury, arachnoid cysts in my thoracic spine, Chiari malformation and nerve damage related to the 8 surgeries to decompress my spinal cord. Some of my doctors recognize that my pain is real, and others like to pretend that my pain is all in my head and is going to go away. Regardless I am still left with the “real” limitations that my pain creates.

Some days I can move around with less pain than others. Often, I get asked questions like, why is your pain better? Why aren’t you hurting as bad? Why are you moving better? The response of ” I don’t know” never seems acceptable.  Instead I often hear comments like- Well, you’re the only one that tell us why? Or What did you do different? When I explain that I have done nothing different, that I have taken all the same medications in the same order as I do every day it is still not acceptable. The frustration is beyond what one person should have to deal with. Why don’t others get that if I could figure it out, I would duplicate it so that every day would be better?

For now, all I can do is keep moving forward by continuing to deal with my pain by taking my prescribed medications at the same time daily, stretching and doing balance exercises to help strengthen my brain’ s communication with my legs and back. Right now, my brain still doesn’t fully realize I even have legs. For example, if I stand at the kitchen counter without looking down at my feet periodically my brain sometimes forgets I am standing, which causes me to fall. This is caused by the loss of proprioception in both legs.

The communication from my brain to my nerves is also on overdrive causing my nerves to overact. This causes the skin on my back, stomach and upper legs to feel like it is being stretched, sliced and is on fire. Even the slightest touch feels intense and painful. Putting on clothing hurts to the point of giving me the chills at times. It also causes my right leg which normally has very little feeling to feel like there are a million spiders with sharp needles on theirs legs are poking me repeatedly.  I am prescribed Gabapentin 700 mg three times a day for my neuropathic pain in conjunction with other pain medications which I take every 4 hours to “help” control the pain. None of this works well. I find that the pain medication takes about an hour to start working then only work at its full capacity for about two hours then decreases quickly. This leaves me in pain most of the day. It is often hard to get motivated to do much or to really want to be around people.

So, is my pain real or in my head? I say both.  The pain is real, but it can be exacerbated by my brain response to stressful situations and by physical changes. For example, if my body is fighting a cold my pain often increases until the illness runs its course. Stressful situations often lead to more pain. It is easy for me to start doubting myself and lose my perspective therefore, creating stress and more pain. But because I have hope that I will get better, whether it is via a new medication and/or treatment or answered prayer I will keep me moving forward. God has promised that if we have faith and ask Him to heal us that it will be done. ” And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven” James 5:15. Having hope is what helps me continue each day even though I know I will wake up in pain and end my day in pain. My prayers continue to be answered as each day I improve even if it is only a small bit. I went from being mostly in a wheelchair to walking with a walker in just a few short months after my 8th surgery.  Currently, I still walk with a walker, but I can walk some without any assistive devices. I refuse to give up as I know God will keep His promise and we all have a better story we can tell.

Published by Denise Rogers

I am a wife, mother, stepmother and grandmother who enjoys spending time with family and friends, crafting, gardening, and I am learning to live with being disabled. In 2017, after my 8th thoracic spinal surgery, I lost all feeling from the waist down as well as losing my proprioception on the right side. This has made it difficult to stand without assistive devices and made it, so I am having to relearn to walk. Plus, I have another uncommon condition called Chiari Malformation Type 1 which also creates balance issues as well as many other health issues. Because of the Chiari and the spinal cord injury, I have been left with severe nerve damage which causes a great deal of pain (5 and greater on pain scale) as well as spasticity, muscle spasms, and allodynia (burning) in various areas of my body. I have endured 8 surgeries on my Thoracic Spine and will probably need more as the drain that was placed will eventually clog and require replacement. Currently, I have a spinal to pleural cavity shunt, which drains the CSF from my arachnoid cysts into my pleural cavity. Professionally, I am a retired Health Care Professional with over 26 years of experience. I have worked in the Public Health realm as well as in Long Term Care and Acute Care. I have a B.A. in Sociology with an emphasis in Social Work. It is my hope that through sharing my personal trials, experiences, and triumphs that I can help others keep moving forward. No matter what life throws at us we can always tell a better story. I know that God is with me and because of this anything is possible. His promise to be by my side every step of the way helps me to keep pushing on even when there are setbacks.

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