What It's Like Living With the 'Tin Man Syndrome'

For approximately one in a million people, the inability to move around freely is the harsh reality. Those living with stiff-person syndrome (SPS), nicknamed the “Tin Man Syndrome,” live with severe and often relentless muscle spasms, rigidity, and contracture. This constant muscle overactivity makes simple movement very demanding. Because the muscles of a person with SPS are constantly firing, we are constantly fatigued and it can be challenging to sleep due to pain. This fuels the vicious cycle. Many people compare the muscle spasms to doing strenuous exercise non-stop. It is also important to remember that these are not your average muscle spasms. These spasms are capable of tearing muscle, rupturing tendons, tearing ligaments, dislocating joints, and breaking bones.

If I’m lucky enough to get some sleep, my day always starts off with a series of muscle spasms when my alarm clock goes off. Some people with SPS have what is known as a exaggerated startle reflex. When we startle, usually from sound, touch, or emotional stress, it can trigger a series of painful muscle spasms. Common things like the honking of a car horn, the slamming of a door, and even a hug from a loved one can trigger these painful spasms.

Once my spasms subside enough, I carefully make my way through my day. On a good day, I can walk using the wall and furniture for support. I have a wider than normal gait and I look like I’m a penguin waddling around. Most days, I rely on my wheelchair to move about safely, as my feet are in a fixed contracture. Like many patients with SPS, my balance has been compromised and I fall a lot. These falls can be problematic, as constant muscle contraction prevents me from being able to “break my fall” or protect myself. Simply put, my muscles don’t react fast enough. Large, open spaces are troublesome because there are no objects that can be used for balance and support.

Nothing is easy with SPS. Every minute of every day feels like I’m swimming through a never ending sea of wet cement. Things like chewing and swallowing food can be hard. The muscles that control breathing can spasm causing serious respiratory compromise and bladder and bowel functions can be affected. Seizures are another scary and unpredictable part of this syndrome. Some people with SPS have curvature of their spines known as kyphosis and hyperlordosis. Kyphosis affects the upper spine causing a hunched back and hyperlordosis affects the lumbar spine and causes the back to arch back more. I don’t have either of these, but my back muscles are so tight on one side, it has caused minor scoliosis. It’s not as bad as it could be, but it is still uncomfortable and could get worse.

Because it is considered a rare disease, getting a diagnosis is a nightmare for many patients with some studies suggesting that the average patient goes undiagnosed or misdiagnosed for seven years. Misdiagnoses of anxiety, phobia, conversion disorder, dystonia, multiple sclerosis, fibromyalgia, Parkinson’s disease, and psychosomatic illness are common. Treatment generally consists some combination of muscle relaxers, pain management, and immunosuppression, as SPS is a neuroautoimmune disease. There is currently no cure.

The human body was made to be in motion, but like the Tin Man from “The Wizard of Oz,” the more we exert ourselves, the more our muscles rebel (in general). Even though the Tin Man is a fictional character, there are many real life “Tin Men” fighting for a better quality of life.