“Life is pain, Highness. Anyone who says differently is selling something.” — The Princess Bride
If you’re reading this, you’re likely in pain. I’m sorry, pain sucks — and I know, because my life revolves around it.
Last year, at the age of 32, I was finally diagnosed with hypermobile Ehlers-Danlos syndrome. It’s a genetic connective tissue disorder characterized by hypermobile joints, fragile skin, and autonomic dysfunction.
In 2016, my pain went from annoying but manageable to debilitating. It hurt to walk, it hurt to sit, it hurt to lie down… it hurt to be alive. I spent most of 2018 trapped in a pain prison: I rarely left my bed and relied on a cane for my wobbly hobbling.
Life as I knew it — and loved it — appeared to be over.
Thankfully, I was wrong: my life wasn’t over. I’ve been able to find a ton of relief in the 16 months since my diagnosis.
How did I do it? Obsessive internet research (like most of us with invisible or rare illnesses, parsing out online sources becomes something of a second job). Conversations with others with chronic pain. Facebook groups.
I’ve tried every topical pain cream both icy and hot, choked down dozens of dubious supplements, seen at least a dozen doctors. I’ve attempted to wish, bargain, plead, and will my EDS away.
Pain relief comes from trial and error through relentless experimentation on yourself to see which coping tools made a difference.
But before I start advising you about your health, you probably want me to list my (surely impressive) certifications and qualifications.
Well, I have a BFA in theatre and a lifeguard certification that expired 16 years ago, so I’m pretty much a doctor.
A doctor of gotcha! Seriously, I am absolutely not a medical professional. What I am is someone who lives with daily chronic pain from an incurable disorder that’s poorly understood and under-researched.
Many doctors I encounter have never treated someone with EDS and often offer contradictory, outdated, or just plain unhelpful advice. When you feel like crap all the time and you can’t rely on doctors, you’re forced to rely on lived experience combined with a little research savvy.
Now that I’ve explained where I got my PhD (a post-it that says “Pain hurts, duh”), let’s get you some relief.
How to lessen your pain right now
To start, I’m going to focus on how to relieve pain without spending money or leaving the house.
When I have a bad pain flare, I often freeze up and resign myself to a day in bed, forgetting all the options I have to feel better. It’s difficult to think clearly or logically when your hip is out of its socket or your fibromyalgia muscle pain is raging or your [insert chronic pain/illness here].
Here’s a simple resource that does the brainstorming (painstorming?) for you. Read on to feel better, right now.
Back to basics check-in:
Have you eaten recently? When we eat food, our bodies turn it into energy through the process of cellular respiration (I’m not being snarky, I’m being literal!). Don’t make your pain worse by adding fatigue, irritability, and other symptoms of eating too little. Eat something!
Are you sitting/lying down comfortably? Are you sitting so engrossed by this pain guide that you don’t realize you’re sitting weird on your foot and it went numb? Is there a proverbial pea under your mattress throwing off your alignment and making your pain 10 percent worse?
Start building awareness of what positions (and how many pillows) are most comfortable and sustainable for you.
Once you’re cozy, nourished, and hydrated, you can move on to the next section.
No-frills pain relief tips:
Note: This is a general guide. I strive to be inclusive of all abilities, with the awareness that not every technique will work for you (or me!). Feel free to try what’s relevant to you, ignore what’s not, and adjust accordingly.
Fascia is “a band or sheet of connective tissue, primarily collagen, beneath the skin that attaches, stabilizes, encloses, and separates muscles and other internal organs.”
Myofascial pain is caused by “trigger points,” which are tender spots within the muscles. Trigger points hurt to touch and can cause referred pain all over the body. Doctors now recognize myofascial pain syndrome as its own disorder.
Myofascial release techniques apply direct or indirect pressure to trigger points, loosening them and easing muscle pain over time. While it’s often used in massage therapy, it can also be self-administered at home using lacrosse balls, foam rollers, and theracanes.
Multiple studies have shown that exercise can significantly reduce chronic pain, increase nerve function and decrease neuropathy symptoms, and even reduce depression and anxiety that’s so common in chronic pain sufferers.
Exercise is perhaps the most important tool in reducing my daily pain. It was also the hardest to start doing.
When you’re in severe pain, exercise seems impossible. But it’s not! The key is to start slow, increase gradually, and respect (and accept) your body’s limits.
I started in January by walking around the block. By May I averaged over three miles a day. Some days I did five miles, sometimes I can’t even do one.
If you’re ambulatory, start with short walks. Can you walk from your bed to your front door? Can you make it around the block? If you’re a wheelchair user, can you make it to the front door? Around the block?
I know it can feel insulting to be told to exercise when you’re in excruciating pain. I’m not saying it’s a magical cure, but it has the potential to really help. Why not find out for yourself?
Heat and ice
Baths aren’t just for babies and fish, they’re also great for pain relief.
Heat helps pain by dilating your blood vessels, which increases blood flow to the area, helping your muscles and joints relax.
No bath? Take a shower! For localized heat, use an electric heating pad. No heating pad? Fill a sock with uncooked rice and heat it in the microwave in 30-second intervals until it’s the perfect hot-but-not-too-hot temperature.
Heat is generally indicated for muscle pain, while ice is recommended for reducing swelling or temporarily numbing pain from acute injuries. I like this handy hot/cold guide from the Cleveland Clinic. Experiment with both and see what helps your body.
Full disclosure: I am a hypocrite who hasn’t tried to meditate in months. But I haven’t forgotten how much it calms me when I do.
Stress and anxiety can have an effect on the immune system, adrenals, and blood pressure. This tends to amplify and increase pain, creating a vicious cycle of ever-increasing stress and pain.
Closing your eyes and focusing on your breathing for 10 minutes does wonders to calm down your nervous system and regulate your blood pressure,
Now, if you’re anything like me, you would die happy if you never heard another word about meditation. So let’s call it something else: relaxing, unwinding, unplugging, whatever you want!
Most of us spend the majority of our time in front of screens. Don’t you deserve a 10 minute break to just… be? I like the Calm app because its interface is easy to understand and its relaxing-unwinding-unplugging-or-whatevers are soothing, simple, and best of all, short.
So you’ve tried all of the above (or you’re not able to try any of the above) and your pain is still bad enough to distract you. So let’s distract you from your pain!
If you’re in an analog mood, try a book or a jigsaw puzzle. But that might be too painful. Thankfully, we have the internet.
I maintain a Tumblr only for following cute animal pics and funny memes. Binge a trashy TV show or a brilliant one, coo over the doggos at r/rarepuppers, or check out this hilarious Nancy comic strip.
The internet is your oyster. May you find your pain relief pearl.
When I was diagnosed with EDS, my entire life fell apart. Everything I read about EDS was discouraging and terrifying.
According to the internet, I would never work again, I would soon need a wheelchair, and I had no hope of ever feeling better. With tears soaking my face and pain raging in my joints, I feebly googled “EDS hope” and “EDS success stories.” The results were pessimistic.
But I now firmly believe there is hope and there is help — I’m living proof.
Where doctors dismiss your pain, I will validate it. Where loved ones roll their eyes at your umpteenth complaint, I will empathize. In the coming months, I hope that “Life’s a Pain” will offer a source of hope where so few seem to exist.
Let’s fight this together, because we — literally — don’t have to take our pain lying down.
Ash Fisher is a writer and comedian living with hypermobile Ehlers-Danlos syndrome. When she’s not having a wobbly-baby-deer-day, she’s hiking with her corgi Vincent. She lives in Oakland. Learn more about her at ashfisherhaha.com.