PAIN SCALES: Using Them To Explain Your Pain (Even Though It Sucks)

by Janet Jay November 12, 2021

PAIN SCALES: Using Them To Explain Your Pain (Even Though It Sucks)

The fucking pain scale. If you’ve ever sought treatment for pain, you’ve heard this more than once:

Ten means the worst pain you’ve ever experienced. Or else ten means the worst pain imaginable. Unless it means “bad enough to go to the ER.” Or just “very severe.” My new favorite is “Unspeakable / unimaginable. Bedridden and possibly delirious.” That seems closest to the gist of it. There’s even a visual scale for kids with faces!

The Wong-Baker FACES Pain Scale, with cartoon faces whose expressions supposedly reflect pain levels — Pick a face, any face

Pain Scale 1-10 index with elaborative text by Prohealth.com

The pain scale and its inescapable fuckery

All those things are completely different, of course. I mean… go look at that sentence again and think about how far apart some of those are. I’ve never given birth, had a kidney stone, or had my arm cut off without anesthesia, but I can imagine how badly those would hurt. If I truly went by ‘the worst pain you’ve ever felt,’ my entire scale would have changed after my L5-S1 disc herniated. Does that mean that what was my 7 was now a 5 because the scale was stretched?

“There are lots of problems that come with trying to measure pain,” Professor Stephen McMahon of the London Pain Consortium told The Independent in 2018. “I think the obsession with numbers is an oversimplification. Pain is not unidimensional. It doesn’t just come with scale […,] it comes with other baggage. How threatening it is, how emotionally disturbing, how it affects your ability to concentrate.”

What does ‘the most pain you’ve ever been in’ really mean?

I’ve been thinking a lot about this since I saw a post by someone new to chronic pain who said that they couldn’t understand the arbitrary value of a 1-10 scale of pain.

She elaborated in a comment: “Especially when they say ‘10 being the most pain you’ve ever been in’ because yes the pain that I’m in all the time is the most pain I’ve ever been in but I always doubt that it’s a 10.”

My response was:

“Your instincts are right, you should lowball it.

Don’t ever say 10, because they will dismiss you. If you’re not literally on your back screaming in pain, or flat-out unconscious, it’s not a ten.

I say that not to be mean, but because I have been through this. Your normal everyday ‘worst pain’ is an 8. At MOST. That’s how you get a doctor to take you seriously.”

And don’t ever, ever, ever say it’s an 11. Unless you’re Spinal Tap.

And don’t ever, ever, ever say it’s an 11. Unless you’re Spinal Tap.

Pain Scale 6-12 from Hyperbole and a Half featuring comedic faces exhibiting exaggerated pain — Only Hyperbole and a Half is allowed to go past 10. And even HER 10 is “being actively mauled by a bear.”

Turns Out Doctors Care About The Pain Scale Numbers, Not The Words

Here’s what drives me crazy: the doctors who make us do this don’t know or care about the technicalities. A ten is a ten is a ten, I’ve discovered, no matter what the ‘definition’ happens to be. Unfortunately, as someone who lives by words and who is very literal-minded in some ways, that realization took me faaaaaar too long.

A ten is a ten is a ten, I’ve discovered, no matter what the ‘definition’ happens to be. Unfortunately, as someone who lives by words and who is very literal-minded in some ways, that realization took me faaaaaar too long.

The Pain Scale: Choosing The Best Version For You (Sorry, They All Suck)

The original McGill Pain Scale / Index Questionnaire, 1975

Some people like to write their own pain scales, and there are a whole bunch of other all-slightly-different scales that do one thing or another. For instance, the McGill Pain Index, created in 1975, doctors ask patients to select from among a list of sensory, affective, and evaluative descriptors for their pain, and assign a number describing their intensity. I’ve filled out this form so many damn times, even in my own medical journey over the last 20+ years (good lord, it’s really been that long hasn’t it). But it’s still a subjective measurement that’s treated as objective and forced onto a numerical scale that truly doesn’t describe the situation.

Things I Wish I’d Known About the Pain Scale

I wish someone had told me at the start that my affect was being judged and noted every time I came in (“affect” in this case means the visible reaction a person displays toward events, often described by such terms as constricted, normal range, appropriate to context, flat, or shallow).

I wish I’d known that the numbers on the scale matter more than the definitions that go along with them: even if a poorly-worded definition traps you at a 6, if your pain feels more like 7 out of 10, you should go with 7.

Pain Scale 1-10 by Famous Artists — So why not use art! I’m feeling a bit Picasso today, how about you?

Describe your pain (seriously, actually describe it)

But honestly it’s better to just get done with the number and move on to actual description. And that’s the right word, too: don’t just say your pain is bad. Describe how it’s bad. Describe the effect it has on your day-to-day activities. Describe the actual pain as best you can: not just “it hurts” but “it burns, it stabs, it clenches.”

Don’t just say your pain is bad. Describe how it’s bad. Describe the effect it has on your day-to-day activities. Descirbe the actual pain as best you can: not just “it hurts” but “it burns, it stabs, it shocks, it cramps.”

My chronic pain started when I was fifteen. I wish, at the start, that I had the words to describe just how different my pain was at night than it was at 10 AM when I might have a doctor’s appointment. My affect at 10 AM and my affect at 10 PM are, well, like night and day. But just saying “it gets worse as the day goes on” doesn’t really communicate that. Turns out most pain gets worse as the day goes on, but not to the extent mine did, and it took time to figure out how to get that across.

An Updated Pain Scale using Roadkill by Holly Scott — My new favorite pain scale right here, using roadkill. By Holly Scott, @curseofmen

Pain Scales: An Imperfect, Objective Measurement of a Variable, Subjective Experience

And that’s the crux of it: all these things are trying to objectively classify something that resists that categorization. There are so many types of pain, but even if you only have one (“only”), pain isn’t neat and tidy. So as you answer pain scale questions, keep the bigger picture in mind. Stress out less about the technical wording of the scale you’re using and more about how you’re going to get across the information you need to get across. Think of the pain scale as an intro to a conversation that might really be useful to both you and your doctor, rather than as the be-all-end-all.

Or just scream “BEES!!!” and hope they get the joke.

Funny Improved pain scale pain index 1-10 — BEES!

What do you do when asked to rate your pain on a scale of 1-10? Are there any pro tips that I completely neglected to mention? Leave me a comment or shout at me on social media and let me know!

November 12, 2021 0 comment

chronic pain Chronic pain Icons Personal experience Stuff (physical items)

Chronic Pain Icons: How Selma Blair and Her Cool Canes Support Me Too

by Janet Jay August 29, 2021

written by Janet Jay

How Selma Blair and Her Cool Canes Support Me Too

Let’s talk about representation, something that has always seemed like it… wasn’t for me. I’m a white, upper-middle-class kid from the suburbs, and none of my issues are immediately visible. I have an assortment of mental health problems and ADHD and you can’t see that either (well, except for all the fidgeting and doodling). My physical disabilities– fibromyalgia, migraines, a fucked up spine, a sprinkling of CPRS– are usually invisible, except when the pain forces me to use a cane or a wheelchair.

While I celebrate the idea of people wanting to see themselves represented in the world around them, to be able to get Share-a-Smile Becky’s wheelchair inside the damn Barbie Dream House, it’s just never felt like it applied to me. Representation for my invisible pain would be, um, an action figure lying in the corner of a music venue, using her purse for a pillow, trying to last to the end of a set. That’s not a fun playscape. Not a lot of smiles to share there.

Representation for my invisible pain would be, um, an action figure lying in the corner of a music venue, using her purse for a pillow, trying to last to the end of a set. That’s not a fun playscape. Not a lot of smiles to share there.

I don’t keep up with fashion and celeb culture and red carpet anything. I don’t have cable television and I literally can’t even tell you the last award show or red carpet I watched. It’s just not a part of my life. But when i saw a picture of Selma Blair on the red carpet of a 2019 Oscars party wearing this absolutely stunning, silky, floaty, flowy gown and a badass cane, it absolutely blew me away.

Blair posted, “When my life flashes before my eyes, I want this portrait by @markseliger to be front and center.”

Staying Sexy: Cool Cane Edition

The cane didn’t distract from the outfit: the cane fucking MADE the outfit. She rocked it head to toe– and as somebody who really struggles with staying sexy and staying myself past whatever mobility aids I may have it was so inspirational.

In my experience mobility aids desexualize you. I can walk around as a moderately attractive person and see people check me out or flirt with me… but put that butt in a wheelchair and any potential interest just evaporates. Which is one reason I’m truly thrilled to see her embracing the cane as an accessory that can be sexy. (Or not, as you choose, just like everything else.) As Blair said, canes should “fit right and look cool… It can still be chic. You shouldn’t have to sacrifice style.”

B&W photo of Selma Blair wearing a black suit, white shirt and black tie, and black cane — Image by Cass Bird for Vanity Fair

Getting Personalized Support

Blair ended up walking the red carpet at the 2019 Oscars with a badass patent-leather cane, monogrammed and featuring a pink diamond. “I have met so many people on Instagram who have said that they were always ashamed of their cane,” said Blair. “You want to still be part of the living, not a shuffling person people get out of the way for because they’re queasy. A cane, I think, can be a great fashion accessory.”

There are a ton of cool canes on the market (someday soon I’ll have a “cool canes” post to link to here!) But there’s a lot of ugly, cheap crap too. It takes people like Blair being loud and proud about their use of and need for awesome canes to help convince businesses that there’s a market for them. Not all of us have designer friends who will monogram our canes for us! But we still want to look awesome going out on the town.

Limping towards acceptance

So thanks, Selma, and keep on kicking ass. We need more examples of head-to-toe outfits where a cane is a plus rather than a minus. She didn’t plan to be here, like all of us, but she has tackled her challenges with grace and drive. By being open about her diagnosis and struggle, she has done an incredible service to those of us with invisible disabilities.

Sometimes the best support is seeing the details of someone else’s fight. Cane or not, we all need someone to lean on. Blair’s story may help prop you up during a bad time! I’ll stop using cane puns, but in all seriousness: Blair’s story is deeply inspiring, and I am truly grateful that she has chosen to publicly share such a personal journey. I’ll close with a quote that I find really inspiring:

In researching this post, I discovered that Blair has filmed a documentary about her struggles, titled “Introducing Selma Blair.” I can’t wait to see it! Here’s more info about it; Blair also recently posted on Instagram to introduce the project.

August 29, 2021 1 comment

chronic pain Personal experience Recommendations Stuff (physical items)Uncategorized

So Much More Than a Headache: What’s Your Migraine Routine?

by Janet Jay July 1, 2021

written by Janet Jay

So much more than a headache: what's your migraine routine? janetjay.com

I have been coping with chronic migraine disease since my teens. Although I get sinus headaches and tension headaches, a migraine is an entirely different animal. If you’ve never had one, it can be hard to explain what they feel like (and they’re different for everyone, of course). What causes my migraines? Stress, allergies, changes in the weather, certain foods (like red wine, sigh), but mostly it’s just the changeable whims of the pain gods. But now that I’ve got a routine down, it makes the whole situation a little bit more manageable. Here’s what a day with a migraine looks like for me and how I deal with it.

When I have a migraine, the people who know and love me can tell just by looking at my eyes (occasionally even before I’ve realized it!). I can see it too: I slow down, I squint a little, you can just see in my face how much extra effort I’m having to put in just to do the most basic stuff. My ex was great about telling me to stop trying to push through and take a break (a problem I have). Partners of people with migraines: ask them how you can help and listen to what they say! It could be as simple as a soda, a neck massage, or a couple of hours of golden silence. But you’ll never know until you ask.

But I’m getting ahead of myself. Let’s go through the routine.

It’s coming…

Sometimes I wake up with it lurking, sometimes it creeps up on me in the early afternoon. Always, there’s a moment of recognition, when I realize the light is hurting my eyes, or my thoughts are fuzzy, or I’ve been rubbing my forehead for 20 minutes without realizing it. I immediately go take my abortive, Maxalt, which will make me a little fuzzy and logy but also might be able to head the worst of the pain off at the pass. (Maybe.) A migraine hurts in a specific way that’s so different than any other headache: it lives behind my eyes and forehead. It makes the skin on my head and neck incredibly sensitive to the touch and achy– I’ve used a giant back massager thing on my temples and occipital bulge (the bumps on the back of my head) so much that the next day I woke up with near-bruises, but it’s one of the only things that gives momentary relief.

Do you have any thingamajigs that help you through your migraine times? Leave a comment below or shout at me on social media and tell me what else I should try!

I wish I had someone to rub my head and neck for me, but until then, I love my damn Theracane so much (my gift guide for chronic pain post goes into more detail about why). A dear departed friend made me a special concoction of oils I use, but it works similarly to products like Biofreeze or Icy Hot. Might be worth trying next time you’re in this spot. I also just bought a goofy thing on a whim called a “jade facial roller and gua sha scraperi” which is supposedly supposed to fight wrinkles, somehow, idk, but I’m finding it surprisingly useful for headache times. It’s basically just the difference between “rubbing at my head with my knuckle or whatever’s handy” and “rubbing at my head with a piece of stone shaped to fit my face,” but it really does feel good on very sensitive migraine skin. For something you can get for $5 it may be worth checking out when you see one on sale.

It’s here…

I try to find something with caffeine in it, usually a soda with some sugar in it as well, as that seems to help for whatever reason. Lights go off, and on go the special migraine glasses I got in a swag bag at a migraine conference I went a couple of years ago called RetreatMigraine. They’re not cheap (though there is a money-back guarantee so you can see if they help) but they truly do make it so the light doesn’t hurt my eyes nearly as much– plus, I get to make “rose-colored glasses” jokes. I don’t know how, but I’ll embrace anything that helps me avoid that stabbing pain during a migraine. (I just bought new everyday glasses and noticed that other brands like Warby Parker and Zenni also offer lenses that block certain types of light, so depending on your particular issues & price point, that could be a better option to try.)

I also take a hardcore muscle relaxant, as sometimes my always-too-tense muscles are a contributing cause and I have the tolerance of an elephant. It has the very nice side effect of also making me sleepy. If I can manage to fall asleep for a few hours, a lot of times I can kick the migraine. Don’t know why, but a nap is way more likely to kick it than the same two hours spent just resting on the couch.

In a weird twist, marijuana is guaranteed to make my migraines worse. It helps just about every other aspect of chronic pain I’m dealing with! (I mean, that my friend is dealing with, as my… friend… and I live in Texas where it’s still entirely illegal, even for medical patients.) But one thing that can alert me them to a developing migraine is if I they smoke a bowl and feel worse. Bodies: they’re super weird! Some people certainly do benefit from cannabis for migraines.

At the end of the day, the whole migraine experience is a giant “throw treatments and recommendations at the wall and see what sticks” situation. Nobody can tell you what will make things better or worse for you. All I can do is tell you what I’ve learned about myself, and how.

This is my hurting-too-bad-to-put-on-makeup ‘as cute as I can be with a migraine’ shot. It’s not a good look.

It’s ending… (maybe)

So after all that, what do I do? Cancel plans, sit in the dark, and watch something on TV that doesn’t require much mental effort because I’ve got brain fog from the migraine, fuzziness from the Maxalt, and a muscle relaxant hopefully kicking my ass in a helpful way. Even if I can manage to force myself to do something, I’m working at a third the speed and a quarter the mental comprehension as normal. It’s hard to explain Migraine Braine but “fuzzy,” “spacey,” “logy” do an OK job. It’s not just a headache: brain fog is real and can affect you before, during, or after a migraine. It’s hard to concentrate, hard to remember things, hard to focus, hard to really force yourself to do anything when you’re in that position. The day after a migraine is always rough, trying to force your brain to focus and move at normal speed when it’s the last thing you want to do. Even though words are kind of my thing, I’m coming up empty trying to describe brain fog, because it’s both like and unlike so many other things. It’s not like what your brain feels like the afternoon after staying up all night, but sorta. It’s not like being forgetful and scatterbrained, though that’s part of it. It’s kind of like everything is twice as far away from you as it should be, metaphorically, so anything you do requires an extra step. Does that make sense? Sorta? It’s the best I’ve got right now.

Somebody out there must have figured out a better way to describe this! Please comment below or shout at me on social media and tell me how you would describe the brain fog of a migraine.

Attending a migraine retreat really pulled into focus for me how many people truly are debilitated by migraines, not just when they have them but in having to rearrange everything around the possibility of an attack. Some people have migraine the majority of the time; some people spend most of their lives in a dark room. I go through cycles of migraines (i wish I knew why!) where I’ll have them two or three times a week for a month or two and then it’ll subside for a while. I’ll only get one a month for a while, and then it’ll come back again, with no warning, rhyme or reason that I can come up with. I’m lucky to have a job that understands and accommodates that, because many don’t.

Migraine disease can change your entire life, but it doesn’t have to ruin it: over the last few years I’ve written multiple profiles on people with chronic migraine who are still able to live and achieve their dreams despite and through migraine disease.

My routine is nothing special, it’s just how I do it. What migraine routine have YOU come up with to help you through these miserable periods? I’d love to hear what other people do when they feel one lurking in the back of their skull about to break through, or how the hell you’d put into words what ‘brain fog’ feels like.

July 1, 2021 0 comment

chronic pain Mental health Personal experience Weight & chronic pain writing

Chronic Pain, Weight, and The Challenge of Getting Through The Damn Day

by Janet Jay May 13, 2021

written by Janet Jay

Chronic pain, weight, and the challenge of getting through the damn day

One thing that can be really hard to communicate to people that don’t have both chronic pain and weight issues is that it’s not just about hurting all the time, it’s about the pain taking up so much of your being, so much of your energy, and so much of yourself that you just don’t have enough to deal with other things. Stuff like anger, stuff like weight gain, stuff like frustration, stuff like anxiety– it’s all tied in together. It’s so, so much easier to keep your temper, or to keep from complaining about something, when you don’t have 90% of your self tied up in just being there and being out in public and interacting with people like a normal human being for a little while. It’s so much easier to eat healthy food when you’re physically able to stand at a stove to cook without it causing you worse pain, when you can walk around the grocery store and choose what food looks good. Because guess what: as much as we like to Protestant-work-ethic our way into “all you need is to work hard and believe in yourself,” it’s just not true. There’s only so much a person has to give; there’s only so much energy and self that a person can bring to a day. Can you rally and push through? Of course, but can you do that every day? No, absolutely not, and it shouldn’t be something that you try to expect of yourself.

Seriously, you should read about spoon theory! Click to read the essay that started it all

Pain, Pressure, and Pizza

I love tacos!! (and pizza) Too much! — It’s true. I do.

So when, again, 90% of yourself is dedicated to just getting through the day and doing the things that you need to do, it’s so much harder to bite your tongue, or swallow a criticism, or to say, “I’m gonna force myself to eat a salad even though I hate salads” than to just say “fuck it I’m gonna order a pizza because my life is miserable right now. I know it is not good for me but damn that moment when I first bite into it sure is amazing no matter if I’m hurting or not.” And sometimes that’s all there is in a day, when you’re hurting so bad you can’t even sit up to watch TV, when it’s just a haze of pain flowing through the days and weeks like molasses. Sometimes that ten minutes of pizza is the best moment you’ll have in the day. Few people deal with days that shitty on a regular basis. They don’t get what our lives are like.

Weight as a function of pain

When my pain and depression and anxiety were at their worst, I gained weight. When I finally found treatments and medication that helped enormously, suddenly I had more energy to spend on exercise, cooking, and trying to change habits in the long term. And I did! I’ve lost a lot of weight! It absolutely wasn’t easy, and certainly involved willpower and tough choices, but at the same time, it’s SO much more doable than it would have been when I was at my worst. People without disabilities have a hard time with weight loss, even with the full spectrum of exercise at their disposal. Take those options away, and obviously, you’re going to have a harder time. Adding a chronic condition on top of the normal weight loss struggle completely changes the equation. (And that’s true about things other than weight: take anything already difficult and combine it with chronic pain and it’s more than the sum of the two, it’s more like chronic pain acts as a multiplier. Weight loss squared. Temper keeping to the third power. …OK maybe not but you get the point. ) Forcing yourself to exercise is one thing, forcing yourself to exercise when you know it’s going to make you hurt more in the short term is entirely another.

It can feel like drowning to think of all the things you know you should do, and it’s even worse when you are dealing with other stuff like depression, anxiety, and ADHD on top of your pain (like somebody I know whose name is Janet). There is a path through the worst of it, but it’s a path that those cruel fat-phobic people have never even thought about, much less had to walk. People like that fundamentally do not understand what it’s like to be you or me. They don’t know what it’s like to trudge through a fog of pain, where every single thing you do requires effort, energy, exertion, and expenditure of pain from your finite supply.

There are some pretty great free image results for "drowning"

Pain, Weight, Jagoffs, and Finding Support

“Weight and chronic pain” or just “weight and health and the medical establishment” is a huge issue that I’ll write a larger piece on someday– there is an enormous amount of prejudice and misinformation out there about weight and health. But until then:

Please don’t let ignorant assholes make you feel bad about your weight or appearance. Hating on fat people is one of the few semi-“acceptable” hates left out there, and some shitty people latch onto it. It can be incredibly hard to read some dude on Reddit screaming about CICO (calories in, calories out) and how you just need to get your ass off the couch. But it’s important to remember that most people in the world are not like that. There are people who understand. There are people who don’t understand, but who are kind and who will listen and learn with empathy. You have to surround yourself with those people and treasure them when you do find them. In some ways, that’s just part of being an adult, but it’s so much more important for someone with a chronic condition that can frustrate efforts to get out or make new friends. I would have never gotten through the last few years without the help and support of close friends who just happen to live all over the globe. When the world around you sucks, create your own world.

May 13, 2021 1 comment

chronic pain Recommendations Uncategorized

Gift Ideas For Chronic Pain– Pt 1: Health & Wellness

by Janet Jay January 18, 2021

written by Janet Jay

Gift Guide for chronic pain: pt 1: health & wellness, janetjay.com

Even if Christmas and the winter holidays are over, my birthday a couple of weeks ago got me thinking about all the little health gadgets I repeatedly recommend to my friends. Some of this stuff took me 20 years to learn about (theracane, where were you all my life?!) and some are old standbys that can help a surprising amount. Here’s a rundown of a few gifts that are sure to be a hit with your friends or loved ones with CP– mostly items I currently own and use myself. (Of course, if you have chronic pain yourself and this stuff sounds rad, I say treat yo’self.)

The gift ideas in today’s post are going to focus on medical or health-related items, stuff that directly addresses a need of a person in chronic pain. Stay tuned for part 2, which will be more focused on style, craft and fun gifts.

Full disclosure: I am posting these options with Amazon affiliate links, though if you have a local business you can buy from I very much recommend and prefer you go there instead.

Heat it up

All heating pads are not created equal: so-called “moist heat” is a lot more effective for pain than the dry heat of an electric blanket or something. Bed Buddy is a brand of heat pack filled with organic materials that you throw in the microwave for a couple of minutes. In my experience, they last for years and are massively helpful for sore, tight muscles. They even offer them with built-in aromatherapy, if that’s your jam.

Stretch it out

Woman helping man stretch using resistance bands

There are all sorts of exercises you can do with resistance bands— if you’ve done physical therapy recently, they may have sent you home with some. But if nothing else, they’re fantastic for stretching. That’s why I recommend everybody have at least one resistance band– when you’re feeling stiff, it really helps you stretch out tight muscles.

vive calf stretcher — Vive Calf Stretcher

The last time I went to physical therapy they had this little plastic thing called a foot rocker that made stretching tight calf and leg muscles SO easy that I went home and immediately bought one for myself. It also came with a spiky ball that is absolutely perfect for working out knots in your feet– when my plantar fasciitis is bugging me, this is the first thing I grab. (It also includes an app, which I didn’t know about until three seconds ago when I went looking for that link.)

Grab it

the HMS Grabber reacher being used by a person in a wheelchair to pick up keys — The Grabber in use

A couple of years ago my L5-S1 herniated and i was taken to the hospital screaming, and eventually underwent an emergency laminectomy. I was sent home with a corset brace that supported my back but didn’t let me bend over (not like I would have been able to bend over without it, because of the pain). As goofy as it looks, a little grabbermajig like this turned out to be incredibly helpful. Every little bit of independence is worth it. This article, “Three Things To Consider Before Buying A Grabbing Tool,” goes through different options that specialize in long reach, firm grasp or great value. I ended up buying a “featherweight” model that did everything I needed it to. For a fancier model with a rotating head and a bunch of other options, take a gander at this demonstration video for the RMS Grabber Reacher — the grabber is illustrated with CGI and there’s an inspiring soundtrack that swells like the moment in a Disney movie where the hero triumphantly decides to fight on the side of good or whatever.

Step it up

Getting regular exercise can be incredibly difficult with chronic pain– no matter how much you rationally know it will help in the long term, when you’re just struggling to get through the day it can be hard to force yourself to do something that’s only going to make you feel worse in the short term. (Damn you, pain cycle!) I live in Texas, land of “nine months of summer per year,” and if it’s hard to exercise regularly, it’s way harder when it’s 100 degrees outside by 11 am. Enter the stepper! I like to hop on it while watching something and zone out. I have the model on the left, which has stretchy resistance bands you can use with your arms, but you can also get a version that has a handle if you’re more concerned about ergonomics or need extra support. (Of course you could buy a stairmaster or a treadmill, if that’s your price point, but until I got this as a gift I had no idea that $50-$100 could buy me something that’s just as good).

Mobilize it (& work on that chi)

I hate the name of these things–“chi machines”– because I feel like whatever it does for your “chi” is a lot less important than what it does for your muscles and joint mobility. You lie on the ground, put your feet in the little foot slots, and then turn it on so that it’s gently moving your legs from side to side with a swimming or wavelike motion. Note: START SLOW! This is one of those electronics where there are some really crappy knockoffs out there. The bare minimum you need is that your chi machine has a speed controller, and has soft footrests instead of hard plastic. This is the exact model I own and it’s served me well for…. eight years? Dang.

Massage it yourself

For real y’all: get yourself a dang Thera cane. I’m legitimately sad that I didn’t hear about these amazing things until just a couple of years ago. A Thera cane is a plastic doohickey (technical term) that looks like the kind of old-timey exaggerated cane that would be used in a cartoon to pull someone offstage when they’re bombing in front of a crowd. You can use it to massage out knots anywhere on your entire body, by yourself, no matter where it is. As someone who lives alone it’s absolutely invaluable for those can’t-reach knots in my shoulders. Pro tip: you can put Icy Hot, essential oils or whatever you want on the knobs too! Seriously, the basic model and one that comes apart for ease of transport are both under $30. I just have a basic blue one and it has been a huge help to me; I can’t recommend this thingamajig enough.

Prop it up with a lap desk

Lap desk with pillow & wrist cushions, used by someone reading book

Lap desks are important for anyone who spends a lot of time in bed or on the couch with their computer. It serves a number of purposes: it keeps your computer stable as you shift around under it, it raises it up and tilts to make the whole process more ergonomic (I particularly like models that also have a wrist cushion, like this one). Another similar option is what’s called a lap table or bed table. It’s like a lap desk with legs; it reminds me of those trays that you see people on TV serving breakfast in bed on. Most lap desks have foldable legs that allow it to transform into a more normal lap desk, though without the cushioned bottom. There’s a huge range of options, from the most simple— a horizontal surface with folding legs– to the extremely complex, with cool materials, adjustable angles, integrated fans, and a hundred other little cool tweaks.

Soak it

Three words: epsom salt baths. I recommend this stuff so often that the people in my chronic pain group are probably sick of hearing about it. But it’s one of the few OTC treatments that does anything at all for my pain. If you have super tight muscles and achy joints, it can really make a difference. On one hand, I have found a ton of personal relief from epsom salt baths and have had medical professionals explain how they work… on the other hand, I just this minute discovered that there’s not a ton of evidence actually supporting its efficacy for pain relief. All I can say is that I can personally tell a noticeable difference in how I feel getting out of a regular bath vs an epsom salt bath, but take my opinion with a grain of [epsom] salt (sorry, sorry, i’m trying to delete it). Anyway, regular epsom salt does the trick, but you can also buy versions scented with lavender, eucalyptus, and other calming scents, a special moisturizing formula with shea butter, and more.

Hit me up with all the stuff I forgot

I know I’m forgetting nine million great doohickeys. Why not give me a shout on Twitter and let me know what I’ve forgotten? And stay tuned for pt 2 of this series, where I focus on fun lifestyle gifts.

January 18, 2021 0 comment

biofeedback chronic pain Complementary medicine Personal experience science

Complementary Medicine That Actually Works: Biofeedback

by Janet Jay November 25, 2020

written by Janet Jay

My pain started when I was 15: nobody knew what was wrong or how to fix it (I didn’t get a diagnosis or explanation for well over a decade), and we were grasping at straws. My mother, bless her, dragged me to everything she could think of to help me, even stuff like hypnosis that I wouldn’t have chosen for myself. Over the last 20 years, I’ve tried (and retried) many more options. Some of them helped; most of them didn’t. The majority of complementary treatments I’ve tried have been an expensive way of pissing money away. But there ARE things that can really, truly help. Everyone is different, and pain is different. But here’s what helped me.

For more info about what complementary medicine is, what it includes, and what I’ve tried, read the intro piece in this series.

Today’s actually helpful treatment: biofeedback.

It was a huge surprise to discover how much biofeedback helped me. The idea sounds weird (to me, at least)– they hook you up to a fancy machine that measures stuff like your brain waves, skin temperature, muscle tension, heart rate, skin conduction and breathing, and then visualizes it. The idea behind biofeedback is that by being able to actually look at something that illustrates what’s going on right then in your body, you can use that (bio)feedback to help learn to regulate some of those processes that you’re not normally aware of but may be able to bring under voluntary control– and eventually, learn to do it on your own without the need of that visualization. As the Mayo Clinic put it, “In essence, biofeedback gives you the ability to practice new ways to control your body.”¹

Does it really help? Science says yes.

In 2002, a task force formed to rank how effective biofeedback is for different disorders.² Biofeedback has evidence-based support for chronic pain conditions including migraines,³ tension headaches,^4,5 temporomandibular joint pain,⁶ and is also used for non-cardiac chest pain,⁷ arthritic conditions,⁸ irritable bowel syndrome,⁹ Raynaud’s disease, and other chronic pain conditions.¹⁰There is evidence biofeedback may help related problems such as insomnia and anxiety, but often demonstrates comparable gains to cognitive behavioral therapy for these conditions. Thus, biofeedback is often used in conjunction with other therapies such as physical therapy or cognitive behavioral therapy, mindfulness and meditation.¹¹
— Institute for Chronic Pain, “What is Biofeedback?”

“Biofeedback is a closed-loop system that translates bio-signals into audiovisual displays.” Source: Biofeedback for Everyday Stress Management: A Systematic Review.

My experience with biofeedback

One of my major problems is ridiculously tight muscles. I also have a whole mess of depression and anxiety issues, which of course makes them clench up even more. When I did biofeedback, the practitioner started out asking me to consciously relax my muscles one by one, and gave me a couple of visualization exercises to try. I could see the indicators on the screen change as my muscles relaxed, and what it looked like when they tensed back up as soon as I stopped focusing on them.

But it was the next part I found most helpful: after learning to use biofeedback to address specific surface issues, the biofeedback practitioner had me focus on deeper changes. It’s a deeply weird feeling to try to manipulate something deep in your brain and body and see a corresponding reaction to it on the screen. And then you do that over and over, to learn what it feels like without the machine’s feedback and how to address it.

It’s really hard to explain. You’ll see a row of lights and the person you’re working with will say “see if you can get those lights to go down,” and you try thinking in different ways and all of a sudden, the light goes down. And then you know that thinking in that one particular way can help you. I don’t know any better way to describe it than that. But I came out of biofeedback with a toolkit that has really helped me try to keep my body under control.

A woman undergoes neuro-biofeedback treatment. (Image credit: Camogoemz, CC BY-SA 4.0 https://creativecommons.org/licenses/by-sa/4.0)

Want to try biofeedback?

Ask your medical team if they can refer you to someone with experience as a biofeedback practitioner. Because state laws regulating biofeedback practitioners vary, many are licensed in another area of health care, such as psychology, nursing or physical therapy. So it’s crucial to find someone with training in biofeedback and experience treating your particular condition. It’s also important to determine whether your health insurance will cover biofeedback (many do not) before you plan your treatment plan.

The NIH page “Paying for Complimentary and Integrated Health Approaches” has a ton of good info and sample questions for your insurance company and medical providers to help you determine and establish coverage.

A Caution on Woo

Biofeedback is supported by science but as it’s a relatively unlicensed field, training and treatment quality can vary hugely. Do your research. But even when you choose the best options with the most experience, you may do your biofeedback treatment at a location that offers other, less scientifically-supported treatments. For instance, my second and most recent biofeedback experience was at a location that did stuff like reiki and aura work. One time the woman who was doing my biofeedback had me lie down and, without asking, started trying to do “aura work” on me. (Again, if woo helps you, go for it: the placebo effect is a real thing, and science doesn’t know everything yet… but I’m pretty sure “aura work” is never going to be supported.) Just remember: you’re paying to be there. Don’t be afraid to speak up and re-direct whatever’s going on.

Conclusion

More and more studies are coming out about the power our minds have over our bodies. Biofeedback is a way to “hack” that power, to focus it and make it work for you. The beauty of biofeedback is that once you learn the skills, you can use them as often as you want. Instead of a treatment like massage that helps for a short period of time, biofeedback teaches you techniques that can help you better manage your pain throughout your life. (The whole “teach a man to fish” metaphor.) Some people find that biofeedback practice allows them to do more and take fewer meds. For me, it’s just amazing that my brain knows the tricks to make my body listen.

For more information:

The Association for Applied Psychophysiology and Biofeedback

Western Association of Biofeedback and Neuroscience

International Society for Neurofeedback and Researc

Biofeedback Certification International Alliance

Citations

“Biofeedback,” Mayo Clinic, Feb. 06, 2019, https://www.mayoclinic.org/tests-procedures/biofeedback/about/pac-20384664
La Vaque, T., Hammond, D., Trudeau, D., Monastra, V., Perry, J., Lehrer, P., Matheson, D., & Sherman, R. (2002) Template for developing guidelines for the evaluation of the clinical efficacy of psychophysiological interventions. Applied Psychophysiology and Biofeedback, 27(4): 273-281.
Nestoriuc, Y., & Martin, A. (2007). Efficacy of biofeedback for migraine: A meta-analysis. Pain, 128(1-2): 111-127.
Nestoriuc, Y., Marcin, A., Rief, W., & Adrasik, F. (2008). Biofeedback treatment for headache disorders: A comprehensive efficacy review. Applied Psychophysiology and Biofeedback, 33, 125-140.
Nestoriuc, Y., Rief, W., & Martin, A. (2008). Meta-analysis of biofeedback for tension-type headache: Efficacy, specificity, and treatment moderators. Journal of Consulting and Clinical Psychology, 76(3): 379-396.
Crider, A. & Glaros, A. (1999). A meta-analysis of EMG biofeedback treatment of temporomandibular disorders. Journal of Orofacial Pain, 13: 29-37.
DeGuire, S., Gevritz, R., Hawkinson, D., & Dixon, K. (1996). Breathing retraining: A three-year follow-up study of treatment for hyperventilation syndrome and associated functional cardiac symptoms. Biofeedback and Self-Regulation, 21, 191-198.
Dissanayake, R. k., & Bertouch, J.V. (2010). Psychosocial interventions as adjunct therapy for patients with rheumatoid arthritis: A systematic review. International Journal of Rheumatic Disease, 13(4), 324-334).
Stern, M.J., Guiles, R. F., & Gevirtz, R. (2014). HRV biofeedback for pediatric irritable bowel syndrome and functional abdominal pain: A clinical replication series. Applied Psychophysiology and Biofeedback, 39(3-4), 287-291.
10 Tan, G., Shaffer, R., Lyle, R., & Teo, I. (2016). Evidence-based practice in biofeedback and neurofeedback, 3rd edition. Association for Applied Psychophysiology and Biofeedback: Wheat Ridge, CO.
Schoenberg, P. & David, A. (2014). Biofeedback for psychiatric disorders: a systematic review. Applied Psychophysiology and Biofeedback, 39(2): 109-35.

November 25, 2020 0 comment

acupuncture biofeedback chronic pain Complementary medicine Healthcare / Medicine massage Mental health Personal experience Recommendations

Complementary Medicine: What Works and What Doesn’t

by Janet Jay November 22, 2020

written by Janet Jay

complementary medicine: what works and what doesn't, janetjay.com

Introduction:

Complementary medicine is not most people’s first choice. My pain started when I was 15: nobody knew what was wrong or how to fix it (I didn’t get a diagnosis or explanation for well over a decade), and after all the doctors threw up their hands, we were grasping at straws. My mother, bless her, dragged me to everything she could think of to help me, even stuff like hypnosis that I wouldn’t have chosen for myself.

Over the last 20 years, I’ve tried (and retried) many more options. Some of them helped; most of them didn’t. The majority of complementary treatments I’ve tried have been an expensive way of pissing money away. But there ARE things that can really, truly help. Everyone is different, and everyone’s pain is different. But here’s what helped me– and what didn’t.

What is complementary medicine?

To put it simply, it’s a treatment that you use in conjunction with conventional medicine. Just as alternative medicine is used as a replacement / alternative for conventional medical treatment, complementary medicine complements the treatment plan your doctor has in place. The term “integrated health” is sometimes used to describe a holistic approach where conventional and complementary approaches are used together in a coordinated way. Out-of-pocket spending on these approaches for Americans age 4 and older amounts to an estimated $30.2 billion per year, according to the 2012 NHIS— almost 10% of OOP spending on healthcare. Money is a huge concern when discussing complementary health: while insurance may cover some of these treatments, most of them are going to be coming from your pocket.

NGL: this is much of complementary medicine

I’ll just put this out at the very start: I have a very low tolerance for woo. If it helps you? Godspeed! I’m not going to pooh-pooh the idea of finding help wherever you can. But I write about and am a big fan of science so I do like a treatment that’s supported by research.

Just how many types of complementary medicine have I tried?

I used this list of complementary therapies as a guide. The below list is at least most of the complementary therapies I”ve tried in the last 20 years: the helpful, the not helpful, the scams and the genuine relief. I plan to write individual posts about the few treatments that truly helped me and at least one post about all the ones that didn’t. But here they are:

Chiropractor*
Hypnosis
Biofeedback
Aura / energy work
Reiki
Trigger point injections
Massage
Myofascial body work
Cranio-sacral body work
PT (esp water therapy)
Occupational therapy
Acupuncture/electroacupuncture
Cupping
Dance therapy (sorta)
Diet changes & food supplements
Relaxation / Guided imagery
Heat therapy (particularly ultrasound)
Meditation, mindfulness and relaxation techniques
Reflexology
Steam room
Water therapy
Yoga
Meditation
Mental health treatment

* I have been in constant pain since I was 15 because of a chiropractor. Please, please, please do not go to a chiropractor, and if you do, look up their education and training, and even then do not let them crack your neck. (There’ll be a post about that too, eventually, but I wanted to say it here first.)

So what worked?

Stay tuned for specific articles about biofeedback, massage and bodywork like myofascial release, acupuncture, and mental health care as complementary medicine for chronic pain, as well as a roundup article of the other few that gave me some relief. I’m also working on a post about what treatments I feel to be the biggest waste of time and money.

November 22, 2020 1 comment

chronic pain Freebies How To PDF Uncategorized

How To Get an Urgent Refill on a Restricted Medication

by Janet Jay October 11, 2020

written by Janet Jay

Includes: Step-by-step instructions and a script to help you communicate with to your doctor and pharmacy

So you need a refill on your pain pills or another med under heavy restrictions, and you need it now. How do you make your doctor understand the situation? How do you make sure the pharmacy cooperates with them? What exactly do you say to make this magic happen?! Let me lay it out for you.

Preface: Don’t Let It Come To This!

Don’t wait until the day before your script is out to try to get a refill. The more important a med is, the more wiggle room you need to leave your pharmacy.  You want to do what you can to avoid being in exactly this position, where you have to carefully choose your words and your stress is through the roof.  Set up automated refills, set up reminders, set up alarms, set up alerts– however your brain works, do what you can to keep on top of this stuff. However: shit happens, lines get crossed, to-do lists get forgotten, and sometimes you find yourself in this position whether you like it or not. So when you really need a refill and you need it now, here’s what to do.

Don’t believe your pharmacy’s automated line

I use Walgreens so let’s use it as an example. If you call in a refill on their automated line it will say “Your meds will be ready at 9 AM tomorrow, is that OK?” and after you assent, they’ll assure you it’ll be there. Don’t believe it! Sometimes the automated system will immediately say “We need to contact your doctor about this refill, but it’ll still be ready at 9 AM.” Don’t listen to them! Maybe that’s how it works with some medications, maybe that works as it supposed to a lot of the time, but you cannot depend on that if you urgently need your meds.

Call your doctor first thing

The next morning, within an hour or so of the office opening, you call your doctor. Here’s the message I would leave for the nurse:

Hi this is Janet Jay, I am a patient of Dr. Whoever and I’m calling because I am completely out of Medication X. I took my final dose this morning and will need to pick them up before my next dose at 4 PM, so it’s extremely important to get this called in as soon as possible to the [pharmacy] at [address/cross streets]. If there are any problems don’t hesitate give me a call at [phone number]; if there are no issues, there’s no need to get in contact with me! Thank you SO much for your help on this, I really appreciate it.

(The bit about calling back is optional but I always stick it in to save them a little bit of effort: you want to stay on the good side of the office staff as much as you possibly can.)

WAS THIS SCRIPT HELPFUL? SUBSCRIBE TO MY MAILING LIST AND RECEIVE A PDF WITH LINES AND INSTRUCTIONS FOR THREE CALLS OF INCREASING URGENCY

Take a look at that script: there are a lot of important hooks in there. No matter what, you MUST say: your name, your doctor, your medication, how much you have left, if it’s time sensitive and just how much, your pharmacy, and your phone number.

No matter how you word it, you have to make sure you communicate

why you were calling,
what you need them to do,
when you need them to do it
& why you need them to do it then

Next step: Wait. Double check with your pharmacy.

You’ve left the message above and are hoping to hear back soon. Most pharmacies have an automated system or app that you can check prescription status on— unfortunately, it really varies how quickly they are updated. That’s fine normally but when you are waiting at home with bated breath, trying to play middleman between a doctors office and the pharmacy about a medication you have to have ASAP, you don’t want to call and nag your doctor about calling in a script that they’ve already called in an hour ago. Not that it would be the end of the world if you made that mistake, of course, but when you’re asking for slightly special treatment you really want to be aware that you’re asking for special treatment. All that to say: even if the Walgreens app says they’re still waiting to hear from your doctor, you need to actually call and ask a real person whether your doctor’s office has gotten in touch. Half the time they’ve already heard from the doctor and it just hasn’t updated yet. But even then, the call isn’t a waste because then you can reiterate when you’ll be there to pick it up and how important it is that it’s ready at that time. The big thing is to be aware of what you’re doing and what you’re asking of people. Hopefully you don’t find yourself in this position often! But when you do, remember:

(Don’t do this. Even when you feel like it.)

Lay out what your problem is, what needs to be done about it, when that needs to be done and why. Stay polite, stay professional, state details and facts clearly.

I’ve definitely had refill sagas that made me cry, but leaving a sob-ridden message only goes so far: a doctors office going to take you so much more seriously if you say something like

“as of yesterday afternoon I am out of my pain medication which I usually take every twelve hours, I woke up this morning and my pain level was an eight so it’s incredibly important that my refill gets called in before noon today so I can pick it up before my next dose is due at 4.”

See what I did there, with a lot of very specific details, a legitimate reason why I’m asking for the things I’m asking, and a call to action? That’s your goal.

I hope this script manages to help some people going through a hard time–phone calls can be so daunting and anxiety-ridden that a lot of people avoid them, but they’re really crucial for problems like this.

REMEMBER: SUBSCRIBE TO MY MAILING LIST FOR A PDF SCRIPT FOR THREE DIFFERENT CALLS

What if you still don’t hear back after multiple messages? Time to examine your options.

Do you have your doctor’s email or some way to contact them? Is there a different line you could call where you speak to a person instead of leaving a message? Are you close enough to the office that you can come in physically? You’ll have a much better chance of stealing a couple minutes of someones’ time that way. And that’s it! Did I leave anything out? Do you have other questions or did this post help you in some way? Let me know on social media!

October 11, 2020 0 comment

chronic pain Personal experience writing

My Life In Pain (TL;DR version)

by Janet Jay September 21, 2020

written by Janet Jay

my life in pain: tl;dr version, janetjay.com

Who am I? Where do I come from, what have I been through, and why did I start this blog? I tried writing it out and it’s a damn novel. So I’m going to see how bullet points work out to get through it all.

Started getting dizzy at 14: nobody could figure out why
Hurt my neck playing soccer and hurt my neck wakeboarding, but walked away from each
Fall of sophomore year, began having horrible tension headaches that turned into debilitating migraines
Mom took me to her chiropractor, who over-adjusted me and sent my whole back into spasm
I’ve been in constant pain since that day
Started going to doctor after doctor
Nobody had any idea what was wrong
“You’re too young to be in this much pain”
Kept going to doctors
Got depressed
Did PT that made pain worse
Did therapy that made depression worse
Started grasping at straws; tried one “alternative” or “complementary” treatment after another. Went to special doctors, special hospitals (Johns Hopkins, Scottish Rite Hospital for Children), still no diagnosis
“You’re too young to be on pain meds”
Did (water-based) PT that helped
Tried to plan a life in pain
Went to college at Carnegie Mellon in Pittsburgh
The head of Pain Medicine at UPMC had no idea what was wrong either
Moved to Knoxville, Tennessee in the middle of the opioid panic
Learned to jump through hoops like a damn pro
Moved to Austin, Texas
Kept jumping through hoops
Got worse
Got worse
Got worse
Finally, in my early 30s, something showed up on a scan: a bulging disc was rubbing against a nerve
Doctor brought up the idea of an implantable spinal stimulator
Became a cyborg; it helped some but not as much as I wish it did
Wrote about it for Popular Science
My L5-S1 herniated and I ended up in the ER, screaming
Emergency laminectomy
For months I couldn’t climb the stairs to get to my bedroom or pick something up off the floor
Got back to my normal crappy baseline, more or less
Landed an amazing part-time job doing communications work for the U.S. Pain Foundation
Switched pain meds from a lot of Schedule 1 stuff to Belbuca, a buprenorphine medication that’s schedule 3
Dropped from a constant 7-8 to maybe a 5-6 on the pain scale
Decided to start a blog

And here we are! I’ve now spent the majority of my life in pain and have spent 20 years learning to talk the doctor talk and walk the medical walk. Stay tuned to this space for all the doctor tips and tricks I’ve spent most of my life discovering, and some of the feels and fears I’ve uncovered as well.

September 21, 2020 0 comment