My Story: Living with Lyme Disease

I have Lyme disease, as well as Babesia and Bartonellosis, all infections transmitted via ticks.  I have been very ill for 6 years, and the pain is so unbearable and unpredictable that it doesn’t allow me to get out of bed when it’s at its worse.

The pain of Lyme disease is not confined to any specific body site, but instead can be migratory and generalized, of varying characteristics and intensity. Not only do many doctors refuse to acknowledge Lyme disease and learn about it, but they disregard my pain and question everything about me.

I feel I am seen as a person seeking drugs or making up things. I have been told that “it’s all in my head,” that I have a “conversion disorder” (a new term for the good old hysteria of women), and that I must have Munschausen syndrome (another demeaning psychiatric diagnosis).

Sally Jones

Sally Jones

I most likely contracted Lyme disease while jogging or hiking outdoors, saving feral cats at the University of California Davis, or working with animals.  I don’t recall a specific tick bite or rash, although I remember feeling ill, with body aches, fever, and back and neck pain for 3 days in 2002.

At the time, emergency room physicians told me it was likely only the flu and sent me home without any treatment or testing.  Since then, the onset of my symptoms has been insidious and gradual, resulting in my inability to complete my bachelor’s degree at UC Davis and having to return home to live with my parents.

Most Lyme disease patients don’t recall a tick bite or have the typical bite mark that physicians look for.  If they had diagnosed my Lyme disease earlier, I would have received treatment and the disease would not have progressed to the extent that it has.  Unfortunately, once the disease process becomes persistent or chronic, it affects many organs, including the nervous system.

My pain is mostly in my joints, back, neck, and head, but sometimes it feels as if my whole body is painful even to the slightest touch.  The joint pain can feel as if someone is pulling my muscles away from my joints.

Sometimes the pain is so intense, that I’m unable to even lift a fork to eat or walk without help.  My pain can be like an ache, a stabbing, a pressure, or an intense feeling of discomfort.  The pain definitely becomes worse on a cyclic manner, when I get fevers and worsening of other symptoms; this happens every 2-3 weeks and lasts about 3-5 days.

The pain associated with Lyme disease is highly variable, not only in location, but in intensity and type, and it varies from person to person.  The pain is migratory, meaning it changes in location, and is not isolated to any one place in the body.  The migratory nature of the pain makes it much more difficult for physicians to understand and believe.  It’s not like somebody with chronic low back pain or headaches.

I have tried most of the oral medications for pain, but have not been able to tolerate them.  I throw them all up within 10 minutes of taking them.  That is why they put me on Fentanyl patches.  The patches work well for me, but they don’t adhere well to my skin.  Because of the fevers and the excessive sweating from the Babesia infection, it is very difficult to have the patches adhere and they fall off easily.

We have used numerous dressings and tapes, as well as adhesives, to make them stay on, but sometimes nothing works. This makes it difficult to get adequate pain control and I go through more patches than other people.

Some doctors are adamant that I should get off the patches and take either methadone or Suboxone, without fully understanding my dilemma with nausea, vomiting and intolerance of oral medication.

It is difficult to find pain doctors that are understanding and interested in finding out about my infections. The fact that my pain is so variable makes it even more challenging.

I would like to not have to take all the medications, including the pain meds, but I cannot cope with the pain otherwise.  I want to get better, regain my life, and not have to rely on medicines. I am slowly getting better from my infections, but at this time I’m unable to stop pain medication.  The treatment of the infections causes the pain to get worse as the bacteria die off, so I need to continue with pain treatment until the infections are gone.

I have never taken recreational drugs, smoked or drank alcohol, except for the normal teenage experimentation. I know that my pain tolerance has increased with use of pain medication, and there will a difficult process of weaning off the medication, but I am eager to get there soon.  I am not afraid of the detoxification process, but I am very afraid of the pain.

I hope that physicians and pharmacists learn more about the difficulties of treating pain associated with Lyme disease and associated infections.  We are suffering, the pain is REAL, and we need to have access to proper pain management without feeling like we are criminals.

Physicians and pharmacists need to understand that chronic pain is just like any chronic disease, and medications are necessary to properly treat patients.  We have the right to be treated politely, nonjudgmentally, and kindly.  They need to stop grouping all people who take drugs as no-good, second class citizens.

Until they come up with better drugs to treat chronic and severe pain, we need to work together.  It’s not our fault that the medical field has not yet come up with more specific and better pain management.  It certainly is not okay to be told “it’s all in your head.”  They would not say that to a heart patient in need of cardiac meds, a diabetic needing insulin, or a cancer patient needing pain relief.

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Sally Jones lives in Santa Rosa, California.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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