"You have been diagnosed with a rare, but severe case of a chronic pain syndrome which has no cure" Rare chronic pain with no cure | Clinical Trial Hero Blog
“You have been diagnosed with a rare, but severe case of a chronic pain syndrome which has no cure”
By Mark Hanna

"You have been diagnosed with a rare, but severe case of a chronic pain syndrome which has no cure" Rare chronic pain with no cure

Published:

By Mark Hanna

It all started when I was playing soccer with my friends, as I have been used to for the previous 15 years of my life. I was a completely healthy 23-year-old male, with no previous history of any illness, when a contactless mild fall on the soccer field altered my life forever. My condition started with localized pain at the right side of chest, only to progress to severe pain, and significant neurological complications that meant a year of hospital was necessary, and a life with pain will continue to be the reality for as long as I live.

I remember vividly the day I visited the neurology specialist at one of the Harvard affiliated hospitals in Boston. It was likely the 10th or 11th visit to a specialist since the day of the fall, and one which would alter my life forever. I remember at the time, I was wheelchair bound, with constant tachycardia and a 9/10 continuous pain diffused all over my body. At the time none of it made sense. After all it was a whole 2 months before any abnormal pains or neurological symptoms appeared since the soccer fall, I mentioned earlier. I remember struggling to explain how the pain felt, I was not sure how one can experience both severe aching pain, and distressing nerve pain from head to toe all at the same time, throughout the 24 hours of the day.

Chronic pain syndrome – no cure

I remember vividly, the doctor asking to be excused for a few minutes after hearing my story, and coming in with a sad look on his face saying, “I am sorry to inform you that you have been diagnosed with a rare, but severe case of a chronic pain syndrome which unfortunately has no cure. In addition, it does seem that there has been nerve damage that started in one side of the chest, that diffused throughout the body and eventually onto the sympathetic nervous system, and that long-term disabilities are indeed to be expected.

At the time, I remember that the pain was certainly debilitating, I have tried every possible combination of pain medication, and interventions without any improvements. My physical explained to me that my body has underwent a rare phenomenon called the Wind-up pain phenomenon, where the pain receptors inside our bodies undergo a conformational change, which means that they are always turned on and never shut off. Some people have claimed to be CRPS, however my symptoms were even more severe than the typical symptoms associated with complex regional syndromes.

Two years on, I am still living in pain. I still take 15-20 tablets of medications per day, and customary visits to the emergency departments for more acute interventions.

Realizing that you will live the rest of your life in constant pain is never easy. Pain debilitates us, sometimes breaks us, but it can never ever touch our spirits. I have found that the best way to cope with my pain is to love pain. By loving pain, I acknowledge that I am human, and once I realize that then my perspective of our purpose in this life soon becomes apparent.

We are not here to suffer and be broken, but we are rather here to use our pains to lift each other up.

Mark Hanna lives in Richmond Hill, Ontario Canada

Thank you!

Clinical Trial Hero would like to thank Mark for taking the time to share her story.

Through stories we create connection and understanding – in relation to others, but also within ourselves. Clinical Trial Hero would like to share your story about your chronic illness in order to help others who may have only recently been diagnosed or simply need to know that they aren’t alone.

If you would like to share your story, please send an email to sandileanneserr@gmail.com with the subject line “My Story”. You are not alone. We get it!

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