Stories from people who track

Blood work, X-rays, MRIs… literally EVERY single test comes back “normal.” It makes you feel like you’re losing your mind. The absolute worst part is getting dressed for appointments. I literally force myself to wear baggy, faded sweatpants and skip brushing my hair, just so I don’t look “too good.” If you wear a bright shirt or look put-together, they just assume you’re totally fine and send you home.

I started keeping a pain log on my phone every single hour. The last time my doctor said “everything looks clear,” I basically shoved my phone in his face.

It’s so frustrating having to fight this hard just to be believed. Keep logging everything. Don’t give up!

# — Anna Lightly edited.

I keep getting told that everything looks normal.

My tests are clear. The scans are clear. Nothing serious shows up. I know that should make me feel better, but it mostly leaves me confused because I can still feel that something is not right.

I have had pain, strange pressure, tiredness, and days where I just feel off. It is hard to explain, especially when I do not even know what I am trying to explain.

After so many appointments and tests, I am tired of saying, “I don’t know, I just don’t feel right.”

I started writing things down because I need something I can point to. Dates, symptoms, how long they lasted, what changed.

I do not know if it will lead to an answer.

I just hope that one day all these little pieces will finally make sense.

# — unknown

I started tracking because my jaw pain seemed to come and go for no reason. Some days it was fine, and other days it hurt to eat or talk.

At first, I only noticed it when it got bad. I had no idea how often it was happening or what was causing it.

Once I started writing things down, I saw that bad sleep and stressful days often came before the pain got worse.

It still happens, but now I feel like I understand it a little better. I can look back and see what was going on instead of trying to remember.

That has been the biggest help for me. I do not have all the answers, but I am not guessing as much anymore.

# — Aaron

My seven-year-old gets head and eye pain almost every week. We’ve done a lot of tests, and so far everything has come back normal.

That’s been one of the hardest parts. Most of the time he looks completely fine. He plays, laughs, runs around, then suddenly he’s hurting again and I’m trying to figure out why.

I started writing everything down because I was scared I’d miss something. What he ate, how he slept, what he was doing before the pain started, how long it lasted. I kept hoping I’d find some obvious pattern.

I still haven’t figured it all out, but the notes have helped in another way. When he’s having a bad day, it can feel like this is happening all the time. Then I look back and see all the normal days in between. Days he went to school, played outside, joked around and felt like himself.

I still wish I could take the pain away for him. But keeping track helps me remember that the bad days do pass.

# — Anonymous

I’ve been delivering packages for five years. About two years ago, my knees started giving me trouble. One afternoon I stepped down out of the truck and felt this sharp, hot pain in my right knee. It eased up eventually, but it never really went away.

Most people on my route probably wouldn’t know. I’m still carrying boxes, climbing apartment stairs, leaving packages at doors. What they don’t see is me sitting in the truck for an extra minute, rubbing my knee and waiting until I’m ready to get back out.

I started keeping a little notebook on the dash. Nothing serious. Just how bad my knee felt that day, how heavy the route was, what seemed to make it worse.

After a while, I started noticing patterns. I learned when to slow down instead of pushing through everything and paying for it the next day.

I still have bad days. But when I start wondering if I’m just being soft about it, I can look at that notebook. It reminds me this has been going on a long time. I know my body better now, and most days, I figure out a way to get the job done.

# — Your friendly delivery driver

I wake up tired a lot, even when I’ve slept all night. Some mornings my body already hurts before I get out of bed.

I still get up and do what I need to do. Make coffee, get dressed, answer people when they ask how I’m doing. Usually I just say I’m fine because I don’t always feel like getting into it.

The pain changes from day to day. Sometimes it stays in the background and I can mostly ignore it. Other days, basic things like showering or making food take more out of me than they should.

I miss having more energy. I miss not having to think about how much something is going to cost me later.

But there are still good days mixed in with the hard ones. I try not to overlook those.

# — Anonymous

I’ve always kept a garden. Tomatoes, butter beans, squash, a few rows of whatever else I feel like planting. These days, the arthritis in my hands and knees decides how long I stay out there.

I keep an old chair by the garden now. I’ll work a little, sit a little, then get back to it. Took me a while to quit being stubborn about that.

When the grandkids come visit, they always end up outside with me. They’ll pick a tomato too early or pull something I wasn’t ready to pull, and I’ll fuss at them some. They know I don’t mean much by it.

I’m slower than I used to be, that’s for sure. But I can still put something on the supper table that came out of my own dirt. I’m not ready to give that up.

# — Karen Arthritis

The pain usually starts low in my stomach, like a tight knot that keeps pulling harder. I’ve gotten good at hiding it. I go to work, answer emails, laugh when I’m supposed to.

Then I get home and sit on the bathroom floor because standing feels like too much.

For years I thought everybody’s periods hurt like this. I thought I was just bad at handling pain. Endometriosis gave it a name, but it didn’t make it easier.

Now I plan around my body more. Heating pad in the car. Medicine in my bag. Fewer apologies when I need to cancel.

Some days I still get angry about how much of my life it takes up. Other days, I’m just proud I made it through.

# — Sarah Howard Women's pelvic pain

I started writing things down because I was tired of trying to remember everything.

Tuesday: got dizzy at the grocery store.
Thursday: hands went numb again.
Saturday: slept ten hours and still felt wiped out.

Pretty soon, the notebook was full of little things I probably would’ve brushed off on their own. Headaches. Weird aches. My heart racing for no reason. At appointments, I’d try to explain it all and always feel like I was forgetting half of it.

One day I brought the notebook with me.

My doctor looked through a few pages and started asking questions I hadn’t been asked before. That led to more tests, and eventually, a diagnosis.

I still write in it. Mostly because I got used to it. But back then, it helped me show what I couldn’t explain very well.

# — Anonymous

My lower back had been bothering me for a while. At first it was mostly soreness, so I kept assuming it would eventually go away.

My sister suggested I start using a tracking app, so I tried it. At night I’d write down how much my back hurt and a few things about my day.

After a few weeks, I noticed that some of my worst days happened after I’d been sitting at work for long stretches.

I brought that up with my doctor, and we talked about a few changes I could make during the day.

I still track it pretty regularly. Mostly because it helps me notice when things are starting to get worse instead of realizing it after the fact.

# — Carl S. Back pain Lightly edited.

Migraines changed how I think about good days.

Sometimes I lose most of a day to lying in a dark room with an ice pack, trying to keep everything quiet. When that happens a few times in one week, it’s easy to feel like I’m missing out on my own life.

On the days I feel better, I try to do small things I enjoy instead of waiting for some perfect day. I’ll take a walk, call my brother, sit outside with my coffee, whatever I have the energy for.

I also keep a note on my phone with little things that went well. Nothing major. Sometimes it’s just that I slept well or got to spend an hour outside.

It doesn’t change the migraines. It just helps me remember they aren’t the only thing happening in my life.

# — Anonymous Migraine