Coiling for Lyme

Trying to cure one case of Lyme Disease

Chronic Pain and Lyme Disease

Pain has been a consistent companion to me for many years, starting in earnest in 2001. Back then, it was wrist pain that shot up into my arms and neck. Even with all the pain, the hokey diagnosis, and the multi-year weekly treatment to keep it under control, I never considered myself a person who suffers from chronic pain.

Then there are the years since 2007, when I reached a crippling level of pain and neurological dysfunction. During all that time, I never sought treatment for the pain, but had a belief that there was an underlying cause that needed to be addressed. So, again, I didn’t consider my problem to be chronic pain.

Last weekend, my good friend gave me two zines on the way to the wedding. They are called when language runs dry: a zine fro people with chronic pain and their allies. I’ve been slowly reading through them as I coil. Mostly the essays are about how people deal with chronic pain, not the treatments, but coping with life that is limited by pain. I appreciated that my friend thought to pick them up for me. It was more obvious to her that I suffer from chronic pain than it is to me.

Starting in 2007, I fought the various doctors who prescribed what I considered palliative care, not quite making my death a little less painful, but trying to offer relief from the discomfort I was in rather that treating the illness that was causing it. I refused to go to a pain specialist because that seemed like it would send me down a road of trying to “feel” better without actually healing my body.

So I don’t think of myself as a person with chronic pain. Instead, I identify as a person with Lyme Disease. But as I was reading the essays in the zine, I realized that no matter the cause, I’m a person in chronic pain.

What does that mean? Well, first it means that I’m often looking for ways to reduce my pain level to something manageable. My primary methods are a diet that doesn’t cause inflammation, rest and exercise, and treating the disease itself which causes more acute short term pain and less pain overall later. Detoxing also helps because it pulls out the neurotoxins that make the pain unbearable.

Next it means that I have some serious limitations on my life. There is a limit to how much I can use the computer (depending on how bad my arms/hands/back are on a given day). Since I’ve decided to do this blog and write (almost) every day, I’ve given up knitting and crocheting, two activities I love that aggravate my arms and hands the same way that typing does. When the pain is in my back, I can’t drive or walk much. When it’s in my legs, walking and yoga get reduced or eliminated. When my headache and light sensitivity are intense, I can’t do much of anything that requires vision, which really means all I can do is lie on the couch and listen to the radio or talk on the phone.

Then there are the indirect limitations caused by my overall pain level. When I’m in moderate to severe pain for any length of time, all my activities go out the window. I just can’t stay focused on anything else. I get tired just from feeling pain for too many hours or days in a row. It’s like my brain gets short circuited by the pain for a period of time and all I can do is sleep or lie around in a daze. I can tell more easily how bad it was once the pain level decreases and I’m cognizant again.

This has been going on for more than four years. I have good days. Days with lower pain levels. The pain isn’t always in the same place. But pain is a big part of my daily life.

Chronic pain. Not my identity, but definitely a major part of my life.


  • Babesia, ilium, 1 minute each side; knees/elbows, 1 minute; liver, 5 minutes; chest, 5 minutes
  • Candida, abdomen, 10 minutes; chest, 2 minutes


  • skin brushing
  • walk in the sun
  • juiced greens
  • extra laughter (above and beyond my normal daily allowance)


Big night sweat last night. Despite it, I slept almost 8 hours.

I’m still somewhat restless and wishing to be productive without the focus it takes to do the things on my list.

My pain level was moderate today, with lots of migration. Pain in my hands and feet when I woke up. Low back pain for a while. Rib pain for a while. Arm and hand pain for a while. A headache this evening. The pain is tugging on my attention, but it is moving.

Other stuff: intermittent urinary hesitation (with regular, full force flow the rest of the time), floaters in my vision, a greater hunger than usual, mild itchiness on my chest, overheated body temperature (compared to the ambient temperature), loose bowels, midday fatigue and sleepiness, itchy eyes, abdominal swelling. There’s something funny going on with my left calf just above my ankle: for about ten minutes, it felt like something was lightly touching it even though there was nothing there, later on, it felt like there was something buzzing in there.

Despite all that, I enjoyed 3 of the super expensive, super delicious pickles from Divine Brine that I bought at the Jackson Heights farmers market today.


Categories: healing process

Tags: , , , ,

1 reply

  1. Divine Brine? Jackson Heights farmers market??? Sounds like I need to make a trip in. 😉

    As someone who lived with chronic back pain for years, I can relate to what you’ve written here. I managed to overcome it finally and make changes to strengthen parts of me that needed it. Along the way, however, I met several doctors who all had different ideas about what would help me. One said spinal fusion. Another said diskectomy. Margaret said, “if you can’t agree, then I don’t think I’ll be having any surgery.” Instead I read Dr. Sarno’s “Healing Back Pain” and that made all the difference. Go figure.

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