A trip to urgent care led to the diagnosis of a muscle spasm, a prescription for muscle relaxers and instructions to follow up with my primary care doctor. An examination by my primary care doctor led to a prescription to PT to work out my muscle spasm.
A few months before this whole ordeal began, I had become a certified Refit instructor (think a lighter version of Zumba) and was super excited to launch a class at my church. Activity was a part of my everyday life. We were an active family- hiking, biking, kayaking, paddle boarding on vacations. Movement for me was medicine both emotionally and physically and helped me to manage my trigeminal neuralgia.
But every time I moved my upper body, my neck, shoulders and biceps went into spasm. And soon, any movement (except for walking) triggered spasm. Even worse, the spasms staring triggering my neuralgia and kept me in an endless loop of shock like nerve pain in my neck and back of my head. I had to give up leading my fitness class and all movement. The pain started to take over my every day life. I bought a special pillow to try to sleep. I couldn't get my head comfortable. I only slept thanks to muscle relaxers and my neuralgia meds. I lost my ability to do things even the most basic things around the house. I could not even lift laundry in and out of the washer. Grocery shopping/any kind of shopping was out of the question. I couldn't lift the bags or even move my neck to look up to a top shelf. I did as little movement as possible during the day and went to bed early. Even work was challenging. I'm so thankful I get to work from home and could take breaks to ice, heat and rest.
After 3 months I had made little progress with PT. My PT was fantastic but we couldn't figure out why my body continued to spasm even with treatment. My neuralgia continued to get worse, it was the worst it had been in 7 years. I went to my long time neurologist for answers. He sent me for an MRI and identified I had a herniated disc in my neck. AHA- finally, a reason for my nerve pain. He sent me to a spine doctor and because PT wasn't working I did a cervical injection. The injection gave me relief but after a few months the shock like pain came back. I began PT again with only slight relief. So I went back for another injection. Once again, it gave me relief but the pain came back. I asked the spine doctor why my disk didn't seem to be healing, he said it was degenerative. I didn't buy that answer, I am only 47 years old and before this, in great health.
All of this transpired over 19 months. 19 months!!! My body continued to decline. My hair texture turned sticky/greasy and my hair (usually super thick) started to fall out. The muscle spasms traveled into my thighs. I had no exercise tolerance, even light movement created muscle spasms. In the spring of 2019, I was lost and had no answers. I began to consider seeing a counselor because I just couldn't deal with the pain anymore and didn't know what to do with myself.
If I could push pause in this story and share that before this whole thing started, I was a healthy eater (I had lost 40 pounds in 2011/2012). I took great care of my body. I moved daily. I meditated/prayed to manage my stress. I did acupuncture to manage my neuralgia symptoms. Self care (because of my neuralgia) was super important to me. My neuralgia was managed and I was living my best life. Seriously, I was on top of my health game! My acupuncturist who has been treating me for 9 years now and who I trust implicitly had said to me a few times, your symptoms present like Lyme disease. And my massage therapist who I've been seeing for a year now said the same thing. That my body (and lymph nodes) were filled with some kind of toxins.
I half listened because of course I've had ticks on me (from hiking and having pets), but I never had the rash or any other symptoms (so I thought). But finally in June of 2019 I made an appointment with a holistic MD. One of the many blood tests she ran on me was Lyme and it came back positive. Along with several Lyme co-infections. Those nasty little bacteria were eating away at my system for years. She referred me to her partner, a Lyme literate MD and we began a treatment regimen at the end of August.
I'll share my treatment regimen and how I'm doing (amazing BTW) in my next post but let me just say...that not one soul...not my primary care doctor...not my spine doctor...had Lyme disease on their radar. And it's a damn shame. Because I suffered for almost 2 years. It is thanks to my acupuncturist, my massage therapist and my new doctor that I'm healing and starting to get back to being me again. I prayed so hard for healing and answers and I finally got them. And it feels downright miraculous.
This is a shortened version of almost 2 years of hell, a whole bunch of medical shenanigans and thousands of dollars spent on unnecessary treatment. I am sharing my story because I know that hundreds if not thousands of people are suffering from diagnosed Lyme. I didn't realize until I got diagnosed how controversial chronic Lyme is. That there are some medical professionals/institutions that don't believe it exists. I am beyond grateful that I've been paired with the right caregivers. The peace I now feel in my mind and body (after only 2.5 months of treatment) is honestly unbelievable.
I've had this mantra on my refrigerator since June. I am healing! And little by little I am. I share my story because there's hope. Always hope.
Continue with courage.
XO,
Tara
