Sunday, March 13, 2011

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. 


  1. Wow, I really had no idea that this disease was so painful. I am a big baby when it comes to pain threshold so I can sort of realate to how agonizing it must be, but probably not in reality. You are a strong person for not giving up! Doctors are stupid too btw. UGH.

    1. I spoke with a doc yesterday in Canada and they jerked his license too. That proves to me they are afraid of the horrible truth of this coming out.Today I am full of pain and yes suicide is rising because of lyme. BTW anew vaccine for dogs with lyme is now available. I do not know about the co-infections .

    2. I did not want to post anonymous my facebook is Deanna Williams email

  2. It was the nerve pain all over my body that almost brought me to a mental breakdown. It also brought me back to doctors as I had been avoiding them for years. I still have nerve pain but it has subsided some with treatements...I wear all soft clothing, avoid winds and being cold. That helps. Lyme is so challenging and the ignorance of doctors unacceptable.

  3. Thank you, Checkmark!

    Renee, it was was the nerve pain that nearly did me in, too! I don't usually get the nerve pain anymore, thank goodness. Mostly I get severe body aches and joint pain, which are tough, but I can deal with them. The nerve pain I couldn't tolerate!!

  4. It's so sad they can't do much for that nerve pain! It really is the most painful thing. I'm going to link to this blogpost on my blog. Thanks for sharing!

  5. From time in the clinic, it is as if most PCPs don't get that we have drugs now specifically FOR NERVE PAIN. I have asked my supervisor in the clinic to prescribe one of the two big guns for nerve pain, and it was something that they had not even heard of.

    Cough, cough (Lyrica). Cough, cough (Savella). Savella is a bit of an oddball that some very good neurologists are using for pain treatment.

    Part of the problem is that there are SO. MANY. DRUGS. out there. But the other part of the problem is that most people are not used to these new options available, and are not comfortable prescribing them or whatever.

    It's a piss poor service to the patient, because these are not addictive drugs like the "big boy" narcotics, and can really improve QOL.

    I think Mom said it best...there will honestly not be much change until there is a real changing of the guard. And I need to be sure to go to the pharm lectures where my profs discuss pain and run my mouth. (I feel slightly sorry for the one scheduled to deal with tick borne diseases, because I intend to ask a LOT of questions.)

  6. Great summary of the daily Lyme madness around world! What helped you?

    1. My best friend is a massage therapist and I credit him with saving my life. Massage was the only thing that ever calmed down the nerve pain. I would also soak in a hot bath several times a day to help with the muscle pain.

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