The story of Fiona
When I was 45 years young, I suffered a stroke in my sleep. There were no warning signs and no family history. My daughter called the ambulance as I had lost the use of my right side of my body. She was 11 years of age.
I remember little of the first few days in the acute stroke area of the hospital. I did some therapy there and was beginning to use walker when they transferred me to a rehabilitation facility (St. Mary’s on the Lake). I was very determined and worked hard to regain the use of my body. I was released to my home and had a walker to use while I continued to work on getting better. The results were wonderful; I had been very lucky!
A few months later, however, I felt odd and had feelings reminiscent of the stroke. A friend drove me back to the hospital. They assessed me and said ‘you have thalamic pain syndrome’ in a matter of fact way. I asked what it was and have learned much about it since that day. The news was not good.
I was experiencing numbness which has developed into severe and chronic pain that is called dysaesthesia as I feel pain, not from environment but from the brain itself.
I know endure daily, burning pain in my right side of my head, particularly my face, but also inside my mouth and nostril and my teeth ache (right side only). My right leg, arm and right foot also burn. Sometimes something can brush my skin and it will feel as if I have been stabbed with a pin. These are fleeting yet very real and very painful. The syndrome has some triggers such as barometric pressure, stress, wind and fatigue.
Although some treatments exist, they are often expensive, chemically based, invasive, and only either mask the underlying problem or are short lived.
I, myself, have not found anything that helps. I have tried some meds and a topical cream. This syndrome is debilitating and prevents me from having a full life. It prevents me from working, which I miss socially, intellectually and financially. I am not on disability so I have no personal income.
As with so many invisible illnesses, there are those who do not believe, and contribute to making the sufferer feel worthless. Those who suffer in silence often become depressed or addicted to their pain medications.
I look forward to the day that this, and other invisible illnesses, are taken seriously and addressed and, finally, cured. Thanks for reading. Enjoy each day and remember it could always be worse.