Why I Started a 'Pain Diary' (and Why I Think You Should, Too)

3k
3k
37

What is a pain diary?

A pain diary is used to monitor levels of pain over a long period of time and collect data on possible triggers for that pain. It might sound very clinical and scientific, but — think about it! If you have a pain condition that changes over weeks or months — and especially if you’re on heavy medication, you aren’t going to remember what your pain was like on June 27! This means that it might be more difficult to decipher what triggers your pain.

Science is the way forward! What do scientists do when they are trying to answer a problem? Collect data!

Why do I need a pain diary?

While it might not seem all that useful straight away, over time, you build up a profile of your pain. You learn what your triggers are (so you know to avoid them). Triggers might be things like… not getting enough sleep, or maybe you did too much physical activity one day. Your doctor or health professional will also be able to monitor any side effects medications might be causing or if any adjustments are needed to your medication. It’s also good to see how your pain develops over time with different treatments like physiotherapy.

Where can I get one?

There are a load of different pre-existing apps for your phone — some are free, others you pay for. I didn’t bother with any of these because they didn’t give me everything I wanted. I found it much easier just to make my own pain diary on Google Sheets. Yep, spreadsheet time, people! Here’s my basic pain diary template to get you started. Just save a copy of it into your own Google account.

How does it work?  

It’s very simple (honestly). You record your pain levels in the morning, afternoon and evening. You don’t have to do it this many times a day, but the more data you collect, the more knowledge you (and your doctor or specialist) have on your condition. You can use this information to spot trends and patterns in your pain. Also, you might find your pain is worse in the morning or you might find that it’s a little higher in the evening…

You can record other things (which I also highly recommend — data is knowledge is power!) like:

  • the dosage of your medication (especially if it changes a lot over months)
  • how many hours sleep you had
  • how much physical activity you did (again, you can give this a numerical rating system if you like)
  • whether or not you went outside that day
  • your mood (use a rating system between one and five: invent your own!
  • include any other columns you think are relevant – this is your diary, your journey in pain

I also put another little column in there for any notes like: Attended physio today, also to give descriptions of the pain, i.e. “shooting pains” or “stabbing pains” etc.

Here’s what mine looks like (I was a bit naughty that month and didn’t record my hours sleep!):

If you’re more of a cell phone kind of person, there are lots of great apps out there for different health conditions. I’m sure some people can mention ones that they use in the comments.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images.

3k
3k
37

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Shelby Hadden Creates 'Tightly Wound,' an Animated Film About Chronic Pelvic Pain

151
151
1

Millions of women will experience pain during sexual intercourse at some point during their lives, but very few will end up talking about that. To help others speak up, Shelby Hadden, a filmmaker in Austin, Texas, is using her own personal experiences and technical skills to make “Tightly Wound,” an animated film about chronic pelvic pain.

“There is not a lot of art out there that represents people with chronic pelvic pain or sexual dysfunction,” Hadden told The Mighty. “When you’re struggling with something or dealing with something, you usually like to talk to people who have experienced similar things, which not a lot of people talk about it if they do have it, people who have it don’t know that they have it. I thought, you know, I really want to tell this story in some way and for a long time I didn’t know what that meant.”

To help others looking for these personal stories, Hadden decided to turn her experience with chronic pelvic pain and vaginismus into an animated film. “Pelvic pain is such an internal experience – both physically and emotionally – and I think animation allows me to tell that story in a visual and interesting way,” she said.

The film focusses on Hadden’s experience going to multiple doctors – trying to get a diagnosis, years’ worth of sessions with physical therapists and the frustration of dating when sexual intimacy is a challenge.

“Being rejected over and over again for one body part really… sucks,” Hadden wrote on her film’s Kickstarter page. “Dating is not even fun for me, because I have this big secret looming over me like a black cloud, a secret that will send them running. After telling one guy I was dating about my vaginismus, he left my apartment, promised to call me, and I never heard from him again.”

In addition to talking about the challenges that come with chronic pelvic pain, Hadden hopes to advocate for pelvic floor physical therapy, a treatment option which has helped manage her pain. “I’ve been going to physical therapy regularly, once a week for about a year-and-a-half and I had been going on-and-off for about the last three years,” she said. “As much as I love my physical therapist, PT is really hard and frustrating and uncomfortable and slow, time consuming and expensive.” Still, Hadden says the treatments are worth it and that the therapists she’s worked with have all supported her both physically and emotionally.

Currently, Hadden is fundraising for her film through Kickstarter, where she has already reached her goal of $20,000, and hopes to release the film by the end of 2017.

You can learn more about “Tightly Wound” through Hadden’s Kickstarter page. 

151
151
1
JOIN THE CONVERSATION

When You're Told You Look Good, Even Though You Feel Bad

268
268
2

Most of us living with chronic pain hear this or something similar every now and again. And it is sometimes when we are feeling our worst. And we think, how on Earth can anyone possibly think we are looking good?

Sometimes it annoys and angers us. We may wonder if they realize just how bad we are feeling. More to the point, do they even care?

We are feeling so bad. In so much pain. Hardly slept. Haven’t even mustered up the energy to run a comb through our hair, yet they say, “You’re looking good!” Honestly, how can they say that? How can they possibly think that? Can they not see how we are feeling? Can they not see that our pain is through the roof, at an all-time high right now? Can they not see that every muscle is hurting? That every bone in our bodies hurt….can’t they see that? That every step hurts so much that we are ready to just collapse in a heap?

So why do people actually say it? Perhaps some genuinely don’t notice that we’re in pain. Or perhaps they do and simply don’t know what to say. Or perhaps they think that by paying us a compliment, it might make us feel a little bit better, so they are actually trying to help us.

And who knows, maybe sometimes we really do look good!

Doesn’t everyone enjoy a compliment? Doesn’t it give everyone a wee morale boost just to be told that they are looking good? And let’s face it, as people with chronic pain, we need all the morale boosts we can get.

So maybe the next time someone tells me that I am looking good, I should embrace it and enjoy it.

In fact, we shouldn’t just sit around waiting for someone to come along and say it. Perhaps we should take a look in the mirror right now and smile at what we see, and tell ourselves that we’re looking good. It’s not so difficult. The difficult part might be in believing it. Practice though…practice.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images.

268
268
2
TOPICS
JOIN THE CONVERSATION

3 Ways to Manage Chronic Pain During Times of Celebration

112
112
0

As temperatures drop, you probably find yourself thinking about the upcoming holidays such as Thanksgiving, Hanukkah or Christmas. For most, this time of year is full of decadent sweets, colorful decorations and comforting traditions.

But for those dealing with chronic pain or illness, however, it can feel like a slap in the face at the most inopportune time. The last thing you want to do is dampen the mood or disrupt the joyous feelings of your friends and family, but when it feels like you are unraveling at the seams, it can be hard to remain cheerful and optimistic.

Focusing on the pain, however, will only make the pain worse. Instead, try engaging in the three activities listed below. Doing so may temporarily distract you from the pain, allowing you to participate in the joyfulness surrounding you instead.

1. Focus on the present (No, not the presents, although that might help also.)

Rely on your five senses to help guide you through this step. When you feel yourself starting to go to a dark place or your pain starts to consume your every thought, refocus your attention on anything you can smell, touch, taste, hear or see.

• Which person has the lowest voice in the room? The highest pitch? Who has the most distinct laugh?

• Close your eyes and try to identify every single smell in the room. Which is your favorite?

• Choose a color and name all the things you see in the room with that color.

• Who has the firmest hand shake? Who has the tightest hug? 

2. Lend a helping hand.

Whether you sort canned goods at your local shelter, peel potatoes in the kitchen with your great aunt or wrap presents for your nieces and nephews with your sister, helping others feels good.

According to The Huffington Post, helping others not only increases self-esteem and decreases symptoms of depression, but it may also release “happy hormones,” such as serotonin, oxytocin, endorphins and dopamine.

• Offer to help a child assemble his or her new toy.

• Rally a crew to help cleanup after the meal is over.

• Assist the cook in prepping the meal or divvying out leftovers.

3. Put on a feel-good playlist.

If you don’t have the option to take charge of the music in the room (or if you think it might be rude to impose your taste on the rest of the party), take some time out for yourself. Either go for a walk around the block (with your iPod and earbuds in tow) or slink away to an empty room in the house and put on a feel-good playlist.

According to ScienceNordic, patients with fibromyalgia reported less pain intensity after they listened to music that they knew and liked. If you aren’t sure which music to choose, feel free to take my 20-minute “Cheers” playlist out for a spin.

To put it bluntly, chronic pain sucks. Although it may feel like you are alone in your fight, you may be surprised to hear 100 million Americans have some kind of chronic pain, according to an Institute of Medicine report.

Luckily, there are natural ways to manage chronic pain, so you can still participate in the happiness swirling around this upcoming festive holiday season.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock

112
112
0
TOPICS
, Contributor list
JOIN THE CONVERSATION

When I Learned to Give Voice to My Chronic Pain

51
51
0

I have been fairly silent in regards to my chronic pain for most of my journey so far. My inner circle knows how difficult it is for me to constantly fight it. People beyond that? Well, they don’t know much. People know the basics: I’ve had three hip surgeries, I still have pain, but that’s generally it.

For many different reasons, many unrelated to pain, I keep most people in my life at arm’s length. I don’t often freely disclose much information about myself. I stick to hobbies and interests, not my past or feelings or anything vulnerable. I have avoided the “real” topics for years.

One reason why? Judgments. My chronic pain began at age 14. My chronic pain began at a time when I was constantly accused of making it up to get attention. If people didn’t accuse me of that, I was judged for being “too lazy” or apparently I “just didn’t want to have to run the mile in gym class.”

Believe me, I was not looking for attention — quite the opposite. All I wanted in high school was to just belong. I wanted to belong in a world that I increasingly felt at odds with. I would love to say that my high school peers weren’t yet the kind and compassionate people they’ve grown up to be. Unfortunately, my peers we’re far from the only ones making the accusations.

Dance teachers, dance peers, family members, family friends, people in waiting rooms and even doctors all said I just wanted attention. While each came with a new hurt, I think the most difficult was the amount of times doctors and specialists dismissed me for wasting their time. I was “wasting their time” because I was just another “attention seeking kid,” and they couldn’t find a reason I was in pain. The people who I was supposed to trust and offer me sound medical advice and support were the ones who caused, arguably, the most damage.

The emotional damage of years of being scoffed at, accused and judged for my very real injury and chronic pain has been far more excruciating to handle than the actual hip pain itself. This not be the case for everyone, but it is for me.

The element of chronic pain I struggle with the most is the emotional journey. Sure, the physical pain is difficult to manage, but it’s more defined. I’ve had almost 10 years to get used to that battle.

The emotional pain however? Working through the damage of four years without a diagnosis (plus five difficult years with a diagnosis) with judgments being thrown from all angles and sides seemed too daunting to even start. So I avoided it. Avoiding is my best — and least helpful — coping skill. Don’t believe me? Ask my therapist. She knows far too well how successful I can be at avoiding.

I have slowly started to wade through the emotional damage my hips have caused me. I work on radical acceptance of my chronic pain, my femoral acetabular impingement (FAI) and other injuries each day. I have slowly come to learn that silence only leads to assumptions by others. I have learned that sharing my pain is difficult, both for me and for others, and I have learned that that’s OK.

I have come to accept that not everyone I know or meet will 100 percent believe in my experience of my pain. Most importantly, I now see I cannot let the disbelief and lack of care in others dictate my actions. I’ve learned only I can validate my pain, take care of my body to the best of my ability despite the pain and do my best to educate others on my condition and chronic pain in general when applicable.

All that being said, I still have a long way to go. It’s important to remember that staying silent about the toll that chronic pain can take on you is not helpful — it’s detrimental. Speaking up may be difficult, but it’s necessary to give voice to the experience.

The emotional and physical journey of chronic pain is never-ending, a facet that has long been a hiccup in my acceptance of it. But, as I have written before, take it one day at a time and never regret sharing your story.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock

51
51
0
TOPICS
JOIN THE CONVERSATION

Why I Feel Guilty for Just 'Being Me' With Chronic Pain

409
409
3

Something that often comes along with living with chronic pain is guilt.

I am always trying to stay positive, trying to do what I can with a smile on my face. I still occasionally get a bit down in the dumps. I will not call it depression, because depression is a lot more serious. Depression is completely different. I get a bit down, just like everyone, but I can also pick myself back up.

However, I do often struggle with bouts of guilt. I will add now that nobody makes me feel guilty except myself. But those bouts of guilt are more difficult to deal with.

I had to take early retirement when I was 28, two years after getting married. My pain has always ruled both our lives. But it gradually became worse over the years. Now I do less, my husband does more and I do feel guilty.

I used to be able to push myself more, but now I just don’t have the energy. I also don’t think I am physically capable of pushing myself anyway. I put my feet out of my bed in the mornings (at some late hour normally), and feel as though my feet won’t hold up my body. I struggle with everything. Life is hard. Just living is difficult some days. And yes, I feel guilty that I can’t do what I wish I could.

But it isn’t just that.

 It’s other things…like not phoning someone, not getting around to answering someone’s email or Facebook message. Not reading blogs or Facebook posts that I would normally read. Or getting tired mid-conversation and losing track. Forgetting things. Getting things wrong. Just generally not being able to keep up.

I used to do things. I baked. I painted. Made cards. Made jewelry. I wrote. I even ironed occasionally. Now, it feels like I have become a zombie. I get up, I eat, I sleep. Maybe take a turn or two on a scrabble game, but that’s about the height of it.

Sometimes I hate being me. Being me is tiring. And I feel guilty for being me.

I actually feel guilty for being me!


I could spend my life wishing things were different, but they’re not, and they’re not likely to become different.

Living with constant pain uses a lot of energy. And guilt is what I classify as negative energy. We, chronic pain sufferers, can’t allow energy to be wasted on something like guilt. We need every single ounce of it just to get through the day.

So, it’s time to get rid of the guilt.

Might be easier said than done though.

We want to hear your story. Become a Mighty contributor here.

Lead photo source: Thinkstock Images

409
409
3
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.