I was in my mid-30s when my painful, yet vague Lambert-Eaton myasthenic syndrome (LEMS) symptoms began to interfere with my daily life. I was unable to walk any distance, had widespread bone pain, and experienced extreme fatigue.
My career had transitioned from public health education to pharmaceutical sales and long days on the road. At the end of each workday, I could not walk unaided. A rheumatologist diagnosed me with fibromyalgia. I wonder, however, if this was a misdiagnosis.
I wanted to find out why my body revolted as I crisscrossed my sales territory in Maine. But I had forgotten that I would lose my voice when doing multiple presentations a day as a public health educator. This was not a symptom of fibromyalgia.
My hips were also an issue. My rheumatologist ordered X-rays to ensure arthritis was not causing the pain and “freezing up.” There was no arthritis, and until I talked with other patients, I had no idea that hip troubles are not a rarity with LEMS.
One particularly frustrating day, I called in sick. I was having what felt like electric shocks shooting throughout my body. I felt like I was short-circuiting. I was exhausted and took the day off to rest, never thinking to ask my primary doctor for a referral to a neurologist.
Most providers took my medical issues more seriously after I was diagnosed with fibromyalgia. However, a constant complaint — dry eyes and mouth — was brushed off as a side effect of the fibro medications. My eye doctor gave me drops for my dry eyes.
But when the fibro medications were not working and I was weaned off them, my dry eyes and mouth remained a major issue. It turned out those symptoms were likely due to LEMS.
I have reason to question my fibromyalgia diagnosis. I am on a trifecta of treatment for LEMS and no longer have the bone pain associated with walking. My dry eyes and mouth are managed with my LEMS medications. And my exhaustion level ebbs and flows based on whether I overdo it and don’t plan for enough rest around activities.
Fibromyalgia is on my medical chart, but I no longer address it. It has been five years since I have been on fibromyalgia medication. I manage pain and bladder spasms with CBD products.
It took me almost 15 years after my fibromyalgia diagnosis to be diagnosed with LEMS. The years prior to my LEMS diagnosis included three neurologists, three MRIs, two complicated and painful lumbar punctures (due to my spinal fusion), and other inconclusive neurological tests.
My dream is for patients to be diagnosed within the first year of myasthenia symptoms. If patients diagnosed with fibromyalgia have progressive symptoms — and multiple sclerosis is ruled out — it is my hope that neurologists will think: “Maybe this is myasthenia!”
The years I spent questioning the validity of my own symptoms could have been spent living with LEMS instead.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.