One Year, Twelve Doctors, No Answers

Lyme disease can't get diagnosed
Even when I couldn’t walk, they said it was anxiety. I didn’t stop searching for answers.
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As I sat reading in a coffee shop after a therapeutic massage, something felt wrong. I was suddenly feverish, tired, and the tremor in my hands was growing more noticeable by the minute. Pain was already my constant companion. It resided in my neck, my hips, and my feet. It was there when I woke in the morning and chased me throughout my day. Often, it became too much, and I cried through my lunch break at work. Pain spread through my hands the previous week, and the tremor joined a few days ago.

As I sat sipping my latte, the pain intensified until my vision blurred.

The swelling of my joints made holding a pen impossible, and I’d long since abandoned wearing my wedding band. I’d cut down my hours at work, hoping the time to attend medical appointments would help me find out why my body was rebelling. I needed to go home; maybe lunch would help.

I couldn’t hold onto a knife. The pain in my wrists and fingers intensified as I tried to grip the metal handle. I gave up on the salad and ate the cucumber whole, following it up with some sliced chicken to keep the hunger at bay. My jaw struggled with each bite as if it didn’t have enough energy to get through the task of eating this meager lunch.

I decided a nap would help. I planned to attend my son’s performance at school that afternoon, so I set a timer. I probably shouldn’t be driving to his school with my hands this useless, so I called my father in law to pick me up.

I laid down, shivering under three blankets, unable to think about anything except the pain. The muscles in my calves and thighs began to spasm, and then my legs started trembling like my hands.

I called my doctor’s office. They’d spent months trying to convince me that my symptoms were related to anxiety, and even convinced me to take anti-anxiety medication that I didn’t need, still, I held out hope that this time they would help me. My jaw, tired from the small meal I’d been able to consume, struggled to form the words I needed to explain what was happening with my body.

“Go to the hospital, you need a neurology workup,” my doctor said.

When my husband answered the phone at work, I said, “I need to go to the hospital now.” Without asking why he left his desk.

I slid out of my bed, waiting to collect my medications and maybe a change of clothes for the hospital. I crumpled to the ground. My legs, like my hands, could no longer function. I attempted to crawl, but the best I could manage was scooting across the floor on my elbows. I called my mother, needing someone to talk me through the terror.

My husband found me shaking, crying, and surrounded by the myriad of medications doctors had been prescribing to treat the symptoms that had compounded over the past year. Jim carried me to the car and rushed to the hospital while I sat in the passenger seat; my condition was deteriorating with every minute.

My jaw began to shake.

The pain intensified throughout my body, and not a single joint was left out. When Jim loaded me into a wheelchair in the emergency room entrance, I discovered I could no longer speak. I could think sentences, but my mouth wouldn’t move to form the sounds. I tried repeatedly but was only able to make unintelligible grunts. Jim didn’t need words; he can read the panic on my face.

I’m wheeled in and sent directly to triage. The ER staff directs my husband to fill out paperwork and move the car. I’m convulsing in the wheelchair, unable to move or speak, and the only person in the world who can understand me without words is gone.

A gurney and a bay of chairs sandwich me in the triage area. A man comes in on an ambulance with a gunshot wound, and I become furniture that is in the way. I want to speak, to ask for help, but my face doesn’t move the right way. My mind is a prison. Is this how the rest of my life is going to be? Will I ever be able to call the names of my children again?

Tears stream down my cheeks and my eyes search the room, trying to make eye contact with someone, trying to find someone who can help me.

Eventually, Jim returns, and we attempt to explain to a neurologist what is happening with me. The neurologist asks questions, and I try to form words, but my mouth isn’t working, and the attempts to speak frustrate me. Finally, Jim steps in, and I use visual cues to correct his account of my symptoms.

I’m never sure what aspects of this medical mystery to tell and what to leave out. I always err on the side of telling the whole story, but this inevitably gets me labeled as an anxious woman having a panic attack. No one is concerned about joint pain at this hospital. They only care about the loss of muscle control.

The neurologist believed I was having a stroke, but my symptoms didn’t line up.

Once through triage, I laid convulsing in a hospital bed in the ER. Nurses checked on me, but I didn’t see a doctor. I still couldn’t speak, and the pain is incredible; tears stream down my cheeks. My husband is crying too because he can’t fix this problem. Finally, someone mentions anxiety.

Jim explodes. He rants about how his wife is an athlete and does all of the recommended health-related things, including exercise and diet. Jim mentions my typical pain tolerance and the fact that I don’t complain about the flu. Jim demands help; he begs for pain relief.

“Healthy 36-year-old women don’t go from athletes to incapacitated over the course of an afternoon! Do something!” He begged while holding my hand.

My symptoms were dismissed time and time again over the previous year as anxiety. Finally, eight hours after arriving, I saw a neurologist. I still hadn’t received pain relief of any kind. It was only after my husband, a tall, broad-shouldered man, stood up and demanded action that something happened. My experience isn’t uncommon.

Women experiencing chronic pain go untreated much longer than their male counterparts. The same is true of acute abdominal pain. Over 75% of the people suffering with autoimmune disorders are women, and my experience with the treatment of chronic pain and weakness is relatively standard. The problem of pain being ignored is even worse for minority women.

I wasn’t raging; I wasn’t screaming for help (I still couldn’t talk). I was suffering and crying in silence, so the medical staff ignored me. Perhaps I should start screaming next time I’m in an emergency room.

The neurologists ruled out a stroke, and one doctor, the first in a year to tell me that she didn’t think anxiety explained my symptoms. She rattled off a list of autoimmune disorders and she wanted to run tests.

What about running a Western Blot test,” my husband asked. We’d asked four other doctors for the test since we live in the woods in Connecticut, and tick-borne illnesses are prevalent in our area.

“Her Lyme titer doesn’t indicate a need to run that,” was the response we got, and what we expected. We figured it didn’t hurt to ask since they were taking seventeen vials of blood anyway.

Eventually, the rest of the neurology team came to see me. One doctor brought a walker and four medical students. Six people stood and watched my attempts at walking. I lifted my leg, and it trembled violently. I set it back down and tried shuffling instead. My runner’s legs were now mere supports; the walker would accompany me home.

Sure, my symptoms had improved somewhat since being in the hospital, my jaw mostly worked, though it was too sore and weak to chew an entire meal, and having a conversation left me unable to sip water from a straw, but it was getting better. Still, as I sat in the observation unit for four nights, I couldn’t help thinking that this might be my new normal.

My life may now include a walker, and much of my nutrition was in liquid form since chewing was a struggle. How could I keep up with my children? How would I manage to work in an elementary school? Could I be a literacy specialist if I couldn’t correctly form speech sounds?

Once I could walk to the bathroom with a walker, and without crashing, the hospital sent me home. Still no closer to answers, even in pain, and unable to work.

Four months later, I saw my twelfth doctor. After spending almost $10,000 in diagnostic tests and visits to specialists, I lost hope.

Though I could walk, my lack of strength made getting to the mailbox difficult. My joints ached in varying amounts, but the burning pain still followed me everywhere. Fatigued settled into my body, but insomnia made sleep impossible to chase down.

I needed answers, but no one seemed willing to help me find them. One doctor even told me, as I sat in his waiting room, pulsating pain moving through my joints, that I didn’t look sick. According to him, since I didn’t appear to be a sick person—I  had on a bit of makeup and was nicely dressed—I must be okay.

I decided to try my luck with a combination of MD and naturopath. This time, though, I wasn’t bringing my medical records in advance. I needed a doctor to listen to my story without reading my previous provider's notes about the pain being a figment of my imagination, related entirely to my anxiety.

I pulled up to this new medical practice, a weathered beige Victorian house, a skeptic. I wasn’t convinced that naturopathic care worked, and I expected to be turned away and dismissed again.

Within moments of sitting in the black armchair in my new doctor’s office, I began to cry. Finally, as I described my story of pain, fatigue, muscle weakness, brain fog someone was listening. She was taking notes, asking follow up questions and engaging with me in a fact-finding spree to uncover the truth. I felt like a person. I felt seen.

I left her office with a lab requisition for the Western blot test and wasted no time getting it done. A week later, she confirmed Lyme disease and started me on a course of antibiotics and supplements to support my immune system. She cautioned me that I’d had Lyme for so long that I shouldn’t hope for a cure. Much of the damage to my joints and muscles might be permanent.

I may never be well again, at least not in the way I’m used to. My running days are likely behind me, but now I can walk a mile on most days. I still struggle to lift my daughter, and sitting on the floor to play is often too much for me, however, I found a personal trainer who is helping me modify weightlifting so that I can feel like myself again.

I can accept any reality, as long as I know what it is. Living for a year in debilitating pain made me into a skeleton of my former self, but I’m slowly working to regain some semblance of the life I love. It’s still uncertain whether I’ll be able to return to my career, but I’m finding success building a freelance writing business, and the slower pace is what my body needs right now.

At least now, this mystery has a name. It’s easier to fight a demon when it has a name. Most importantly, no one is telling me I have anxiety. They can see the tremors and the swelling in my hands. They see the pain clouding my eyes and know I’m not crazy. I’m also fairly certain I’m not insane anymore, which is even more critical.

 

 

 

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