'I often can't move': What it's like to live with stiff person syndrome

"After symptoms that ranged from mild to worrisome, I learned that I have stiff person syndrome, a condition that affects 1 in a million people."
/ Source: TODAY

Jane Lees, 58, lives in Indianapolis and used to work in media. Last year, she suddenly lost a lot of weight and began experiencing extreme muscle pain. She learned a rare condition was behind it. She told her story to TODAY to encourage others to advocate for their health.

Everyone likes to think of themselves as 1 in a million and last year I learned I truly am. After a series of symptoms that ranged from mild to worrisome, I learned that I have stiff person syndrome, a neurological condition that affects 1 in a million people, mostly women. Having a unique condition has been tough, but I have spent the time trying to understand who I am now that I live with this rare illness.

I love to cook, but now I need to sit down every few minutes to build up my strength to continue. Courtesy Jane Lees

I first noticed something wrong when I joined my daughters for vacation last year in Florida. I struggled to keep up with them. But the real wake-up call came when I visited my college roommate and she was shocked by my appearance — I weighed about 87 pounds after suddenly dropping 20 pounds in a month without explanation.

Then in early May, I woke one morning and realized I could no longer ignore what was happening. I felt like I had the flu, but I had received a flu vaccination. Did I somehow get the flu from the vaccine? Doctors felt somewhat puzzled by my condition, but found that I had an infection and treated me for it.

For months, doctors didn't know what was causing my extreme muscle pain, fatigue and stomach upset. Finally a med student suggested stiff person syndrome. Courtesy Jane Lees

I never completely recovered. The left side of my body felt so tight that I’d ask my daughters to help stretch it. I struggled to walk and I felt unsteady on my feet. My body was so stiff and weak that I felt like I did not have the strength for basic tasks. I was in constant pain. By September I returned to the hospital and was diagnosed with Type 1 diabetes. I felt relief and imagined feeling better soon, but it never happened. I still had crippling pain, stiffness and weakness.

The team at Indiana University Health ran every test they could think of trying to uncover the reason why my muscles felt so tight, but still felt at a loss about what was behind my pain.

Then a med student mentioned something that the doctors and nurses had never heard of — stiff person syndrome.

Because stiff person syndrome compromises my immunity, I can't see many people these days. Though I still appreciate time with my family.Courtesy Jane Lees

At first I felt overjoyed there was a name for what I was experiencing. But that turned to worry when doctors admitted that they don’t really understand how to treat this disorder.

I started taking valium three times a day to relax my muscles. The worst health problem I had prior to this was when I was a young mother and caught chickenpox when my daughters had it. Now, I relied on valium to experience less pain so I could walk and care for myself. Taking it so often made me feel groggy so I now take it just once a day. Every three weeks, I receive intravenous immunoglobulin, antibodies to bolster my immune system. Even though stiff person syndrome is neurological it acts like an autoimmune disorder.

I'm still learning to navigate life with this condition.Courtesy Jane Lees

The immunoglobulin reduces my pain. My thinking even becomes sharper after my infusion. I’ve had to stop working and I have been living with my daughter. As much as I want to live independently I’m not sure I could manage this illness on my own.

Over the past year, I have had to learn who I am now and accept there will never be a cure for stiff person syndrome during my life. I miss working and using my talents. I once thrived on pressure but now I spend my days managing my health. I advocate for myself constantly. While my health care team is great, I often have to be assertive when explaining how I feel and what I need because it’s such a rare disorder. What’s more, navigating the disability system is overwhelming and I dedicate so much time to trying to figure it out.

It gives me meaning to sharing my story so that others understand this rare condition exists and that it is important to seek help for any health condition as soon as symptoms start, even if they seem mild. I likely had signs prior to last year. I often stumbled, had leg weakness and tripped often on stairs. At one point, I couldn’t swim any more. I wish I hadn’t lived in denial and I sought help earlier. But I also hope for better research so that others don't have to live with so much pain.

My daughters have been a tremendous help following my diagnosis.Courtesy Jane Lees

I often can’t move because the pain and muscle stiffness is overwhelming. It's challenging because I can think as well as I ever could. I feel stuck in my body when I have a flare up. On good days, I try to read and cook, though I often have to sit down because it’s tough to stand for a long time. I journal and participate in patient groups on social media. As my immune system is compromised, I have not seen a lot of friends in real life during the COVID-19 epidemic, but I still try to keep in touch with people. I’m so thankful for my friends and family who help me through this and for my faith that keeps me strong.