Lyme Disease: A Chronic Pain in my Butt

My husband was telling me about a program he was listening to yesterday morning on NPR about treating chronic pain. Since the program was on at an ungodly hour (7 A.M. on a Saturday morning!), and since I am not a morning person, I missed the program.

My husband explained the three different types of pain they talked about. One group of chronic pain was nerve pain; one was muscle, joint, and ligament pain; and the last group was organ pain. Of these three groups, the most difficult to treat is nerve pain. You can prescribe narcotics, but they do little for this kind of pain.

Listening to my husband explain this to me, I found myself getting angrier and angrier. Because of the complexity of Lyme disease, the lack of reliable tests, and various other factors, Lyme disease is extremely misdiagnosed and under-diagnosed. It took a year worth of doctors for me to finally get properly diagnosed with Lyme disease!

In the beginning of my illness, when my pain was at its worst, I would get shooting pains up my legs and was literally crawling across the ceiling in agony. I begged God to let me die--every single day. I went to my primary care physician multiple times in tears because of the amount of pain I was in. I told him that every single day on a scale of 1 to 10, my pain went all the way up to a 10.  However, because my mono test was positive, that was that and he was done with me. He finally agreed to give me Darvocet, but when I told him it didn't touch the amount of pain I was in, he, assuming I was just another person begging for narcotics, told me, "I'm not comfortable giving you anything else and I'm writing that in your chart."

In hindsight, I know that what I was experiencing was nerve pain in my legs, and according to the program my husband was telling me about on NPR, narcotics don't help that kind of pain anyway. I was left with excruciating pain, zero help for pain management, no clue as to what was making me so sick, and the awful feeling that my doctor--whom I deeply respected up to that point--thought I was a junkie. That incident left a bruise on my heart that has yet to heal, nearly a year later.

I  know now that the reason for all that pain was that I had a vitamin D deficiency, a raging case of mono, Lyme disease and multiple co-infections. After the Darvocet incident, I knew it was time to move on to another doctor who would listen to me, believe me, and help me with my pain--both in treating it and in actually figuring out what was causing it. Sadly, the opposite happened. It got worse and worse as I struggled to drag  my aching, failing body from doctor to doctor who shook their heads at me and said nothing was wrong.

I am thankful that I didn't throw in the towel when my pain was through the roof. I have a lot of pain on a daily basis, but not nearly as much as in the beginning, especially now that I've been in treatment for 6 months. I credit a very dear friend who is a massage therapist with getting me through the worst of my pain. But other people aren't as lucky as me.

The number one cause of death from Lyme disease is suicide. Go back and read that sentence again! Lyme disease causes more pain than anyone can imagine. Estimates claim that only one in ten cases are being diagnosed. If that's true, that means 90% of people with Lyme disease are undiagnosed and without help with pain management. How many people will we have to lose before doctors start educating themselves and actually listening to their patients?

I am a mother, struggling to take care of my family. My pain is real; my symptoms are real. This is my voice, my story--the story of Lyme disease. This story is mine, but it is common. This disease is spreading quicker than the knowledge of preventing it.