PAIN is one of the hardest symptoms to explain – mainly because it’s not a single symptom. Pain happens in lots of places for lots of reasons and with differing degrees of severity and duration.

When you have an acute injury to a specific body part, doctors ask you to describe your pain (achy, dull, sharp) and then give it a number from 0 (no pain) to 10 (worst pain ever).

Chronic pain doesn’t work that way and Lyme+ pain is even more complicated.

I’m gonna break down the different pain issues I experience below. But first let’s talk about that pain scale. 10 years ago, I wrote a post about the pain scale (here) that gets deeper into the subject where I explain that pain for someone like me has to include:

• Type of pain (achy, knife/spike/ice pick, burning, electric/shocking, squeezing, headaches/migraines, etc.)
• Location
• Severity (mild, moderate, severe is just fine)
• Frequency (occasional, often, constant)
• Duration (some happen in a flash, but some may last several minutes or hours)

Frequency is subjective. Back when I wrote the pain scale post, occasional would mean once or twice a day, often meant many times a day and of course constant was constant.

Now I would use these words: several days a month, several days a week, every day, multiple times a day, all day every day.

Let’s get into types of pain.

All Over General

If you’ve ever had the flu and felt achy all over your body, you can relate to this. I feel achy in every muscle & joint, down to the bones, all day most days to some degree. Over the last few years, this pain has been fairly mild, but some days, it’s so intense I can’t think about anything else.

Knife, Spike or Ice Pick

This is the feeing of something sharp stabbing me. More often than not, this has been located somewhere on the head (esp the ice pick feeling), but sometimes it happens on my arms, hands, or feet. This used to happen severely multiple times throughout the day, now it’s mild pretty much every day, but it can be moderate or severe several days a month. (This has been one of the worst pains I feel – imagine having an ice pick jabbed into your head – yeah, it’s bad.) This is usually a flash pain that is sharp initially and may take a few minutes to subside.)

Burning, Tingling

This has to do with nerve endings. It often feels like the skin is on fire or like a blow torch is being aimed at a specific body part (usually my feet and lower legs). This has been near constant (mostly mild, some days moderate) since 2014 but there are times when it’s severe (also one of the worst pains I feel).

Electric, Shocking

This almost always happens further down my extremities – lower in my arms or legs and feels like a small bold of lightning rolling across the skin (again has to do with nerve endings). But there are also times it feels like my entire body is plugged into a socket causing everything to feel electric. I’m not sure this makes sense to someone who hasn’t felt it.

Squeezing

This is muscle pain – it’s like someone is gripping my arm or leg really tight. It’s usually moderate and still happens throughout the day.

Headaches & Migraines

This is a longer section because there are so many different types of headaches.

Most people have had some type of headache – usually a dull ache that feels like it’s in the brain.

This is another one that’s been constant since 2014 – a full ache all over my head. But sometimes it feels like…

… there is a vice strapped around my head squeezing.

… someone has punched me in the forehead (I’ve learned this one has to do with blood flow – it often happens when I get emotional or over stimulated (by people, lights, smells, even something like stubbing my toe).

… pressure- something being pressed into my brain.

Migraines are more severe and generally involve multiple feelings mentioned above. They cover the entire head and make me extremely sensitive to light, sound, touch. I get nauseous and almost always throw up once or twice.

Face Pain

There is a set of nerves that run along the outside of eyes then drop down along the cheek and jaw bones. More often than not, I am only affected by specific parts of these nerve endings (for example, I may feel like there’s a spoon scooping around my eye or my jaw may feel broken). Sometimes it’s the whole thing. It can be mild, frequent and last all day or severe, occasional and last a few minutes or hours.

Bottom of Feet

This one is Bartonella specific. Bartonella is a malaria like organism that often accompanies Lyme disease. One of its telltale signs is pain in the bottom of feet, especially when you first get up. It feels like the bones in my feet shatter on the bottom when I walk. The first few steps are the worst, then it calms down a little.

Joint Pain

Have you ever had a knee or shoulder injury? Then you get this one. Only this isn’t related to a specific injury and there’s no fix for it. It just hurts.

Sometimes it’s all the joints – sometimes it’s just one (my right knee is a regular culprit). Sometimes it’s mild – sometimes it’s severe. It almost always lasts for hours or days. And it can be really difficult to function when it’s on the severe side.

Sometimes it comes with swelling. Sometimes it comes with weakness.

One of the tell tale Lyme symptoms is that it migrates and isn’t usually lateral (meaning it will be the right knee one day, the left elbow another day).

Back Pain

Back pain has been a part of my life since I was young. But it really became a significant problem shortly after I was bitten by 2 ticks in 2006.

My low back especially has a lot of issues. I have disk and vertebrae issues affecting the entire lumbar and sacrial spine. I also have some thoracic spine issues that are difficult, but the low back pain has usually been the most intense.

Multiple MRI’s have shown severe damage. Early on it was attributed to degenerative disk disease – and that may be part of it, but it’s also Lyme disease.

For many years, I would get low back pain that would leave me flat on my back for days or weeks. When I first became disabled on July 10, 2013, I had severe back pain that took me to the ER. They gave me dilaudid (twice) and sent me home, unable to control the pain.

I still have low back pain but it generally doesn’t rise to the same level as it did back then.

Things that help:

• Magnets (Nikken)
• Massage
• Baths with essential oils, salts and magnesium
• Strategically placing pillows or other support
• Being careful with lifting and movement (once it’s triggered, there’s no going back – so it’s important to know my limits)
• Stretching and posture exercises

Neck

I started getting neck pain in 2014 too (this is the year all the symptoms kicked into high gear). I have multiple disk and vertebrae issues along the entire cervical spine and into T1/2.

The biggest problem for me (right now) is cervical instability, which is when the ligaments become weak. It’s like my neck isn’t strong enough to hold up my head (because it literally isn’t).

I used to think neck pain wasn’t that complicated. But there are many body functions that can be affected.

Think about everything that runs through your neck:

• Spinal cord – hollow canal filed with cerebral spinal fluid, connects the brain to peripheral nerves, part of the central nervous system
• Vagus nerve – runs the length of the spine and connects to or affects everything in the body (learn more here)
• Carotid and vertebral arteries – supplies blood to the head and neck
• Veins (jugular is largest) – return deoxygenated blood to the heart
• Lymphatic vessels and nodes – critical to fight infections in the head and neck (learn more here).

Now imagine what happens to these when the disks in the neck become narrow and pinch or cut off supply of these critical systems. That’s what happens with cervical instability! The ligaments can’t support the vertebrae, the disks between the vertebrae collapse, all of the systems I mentioned become compromised.

And yes, there’s pain – lots and lots of pain. The muscles compensate by becoming tight and pinched nerves signal the brain constantly. This is no small thing.

And there’s no real treatment for it. There’s management, but no fix.

Fibromyalgia

Another diagnosis I was given (in 2007, after I was bitten and before I knew I had Lyme) was fibro. In addition to widespread pain, symptoms include fatigue, trouble thinking or remembering, waking up tired, pain or cramps in the lower abdomen, depression, or headache.

One of the key symptoms for me is that my scalp becomes overly sensitive- I wear pony tails every day but some days, it feels like it’s pulling my hair out. Now imagine that pain all over your body.

Hands

Pain and weakness in my hands can make it really hard to do simple things like brush my hair, open ziplock baggies and prepare food (I use knives with less and less frequency). We aren’t sure whether the pain comes directly from the joints in the hands or if it radiates from the shoulders & upper thoracic (thoracic outlet syndrome is something we think affects me but haven’t been formally diagnosed) – I believe it’s both. Either way, there are some things I just can’t do anymore.

More to Come!

I’ll add more to the post as I think of it. But for now, this should give you the idea of what a day is like with pain for a lymie. I experience all of this most days. Some days are not as bad as others, some days I’m just gonna be in bed.

And thats what it’s like. It just hurts.