Invisible Pain

Invisible Pain

Always running and playing sports. Jumping on the trampoline for hours. Smiling at each new day. That all changed after the chlorine burn from the water park.

She was burned from head to toe, as red as a lobster and as fragile as a crystal goblet.
The blisters developed, the rashes raged on and the pain never went away. The days go by and the pain is still there. The doctor said nothing is wrong, you must be faking for some kind of secondary gain.

As she lay awake at night in pain and in fear, she cried herself to sleep because nobody will hear her. Her ankle and wrist feel like there is a snake squeezing and burning her inside and the pain will not go away. Back to the doctor where they say all is fine, frustration mounts, doubt in herself sets in and depressed that nobody will hear her, she is in pain. Unrelenting pain.

Any time she simply bumps her foot or hand, it is pure torture. The weeks go by, turning into months, than years going from doctor to doctor to never be heard, she hurts, more than hurt, she is suffering with invisible pain.

A call from the school saying “ My arm is like a balloon and it hurts so much.” Back to the doctor, this time the Emergency Room, where they are convinced it is a blood clot, x-rays first than ultrasound. Normal. How can it be normal when it is blown up and excruciating. The tears mount as everyone just says ice it and rest it.

The ice causes even more pain, which results in throwing the ice pack across the room and the room filling with screams. But nothing is wrong they say. Often times not being able to write and do her school work, often times not being able to walk, but they all say everything is okay.

To not be heard when you are in pain is unacceptable. To not be believed by peers, coaches and all is hurtful, and being dismissed leads to another invisible pain….depression.

Going through the trauma of being burned at a water park, where it is supposed to be a place of laughter, joy, great memories is bad enough, but to have your life change in an instant at such a young age, now in a life full of pain and nobody believes or wants to say because the pain resulted from the chemical burn at a commercial location is scary, inconceivable, and plain wrong.

Nearly 3 years living in chronic pain and not being heard, finally a new doctor listened. A neurologist, he explained it all. She has CRPS, also called RSD. There was a name, this is real, validation has been made. The prognosis is not good for this young girl, but she was heard and she was finally going to have a name to call her invisible pain.

CRPS: Complex regional pain syndrome (CRPS) is an uncommon, chronic condition that usually affects your arm or leg. Rarely, complex regional pain syndrome can affect other parts of your body.
Complex regional pain syndrome is marked by intense burning or aching pain. You may also experience swelling, skin discoloration, altered temperature, abnormal sweating and hypersensitivity in the affected area.
The cause of complex regional pain syndrome isn't clearly understood, though it often follows an illness or injury. Treatment for complex regional pain syndrome is most effective when started early. In such cases, dramatic improvement and even remission are possible. (The Mayo Clinic)

Due to the doctors not listening or wanting to be involved with a possible litigation matter, failed to diagnose properly and put this young girl on some kind of treatment to at least alleviate pain and stop from its progression, this disease has progressed in this beautiful young 12 year old girl. The pain and the swelling and the discolorations have mirrored to the left side and she is nearly all over body pain.

Having put ice on the pain is one of the worst things you can do when you have CRPS. There is little research or education about CRPS. This condition is often diagnosed as a psychological, but CRPS is not psychological, it is real, extremely painful and there is no cure. This is a nerve condition. Caused from an injury, in this case, chemical burn, damaging the nerves, the Sympathetic Nervous System. Although the initial injury is gone, the Sympathetic Nervous System in the brain thinks that you are still in it, therefore, firing more and more pain.

If you or a loved one has invisible pain, please do not accept that it is nothing. Please go to neurologist or pain specialist that can give your pain a name and validate it for you.

Never allow anyone to judge you or get away with thinking you are faking, this is real and you deserve support.

Feel free to email me with any questions: lifecoachkbaker@aol.com