When you wake up in misery: A Guide For EDS warriors (and normies too)
I'm not at my best today, loves.
Last night I slept as I normally do, but part of my neck took the opportunity to slip out joint a little bit, and now I can't move in any direction more than a few centimeters without intense pain.
Subluxations (minor dislocations) are as common as Thursdays in my world living with the hyper mobility type of Ehler's Danlos Syndrome, though this is the first time one has ever happened in my neck.
Jaw? Daily. Low back? Often. Wrists, fingers, shoulders, knees, hips, and ribs? Sometimes.
My neck going out was only a matter of time, and SURPRISE today's the day! Guess how excited I am...not.
Yes, it sucks. But it's not even close to being the worst thing that's happened in the world, it's not even the worst thing that's happened to me, and it’s going to be fine.
Pain and I have been roomies in this here body of mine for a loooooong time, so here's my best advice on what to do when everything hurts all of a sudden...
Note: if your pain is from a recent accident, if there's any visible swelling or discoloration, if there's any new and unusual numbness, tingling, shooting pains, any fever, or vomiting, all of the things that are clearly saying GO TO THE HOSPITAL then why the f*** are you reading blogs, GO TO THE HOSPITAL. We're talking about "My neck hurts when I turn my head" or "My back feels like it's trying to pull itself apart when I lie down" or "My knee sucks when it rains" kind of pain here.
I am not a doctor. I do not have the training, knowledge, or licensure to diagnose or prescribe anything to anyone. Always always always follow the advice of your doctor when it comes to the treatment and care of your body. I write here based on my personal experience of living with chronic pain for 18 years, and to share the things that help me on my bad days.
(There. That part’s done. Without further ado…)
My best advice for the seriously ouchy days:
1.) Rest. Rest deep and long with zero guilt.
The most important thing I've learned about acute pain is DO NOT FIGHT against it. You will never win. Even if you knuckle through another day, it makes it so much worse at the end. I tried to tough out days like this over and over for the first 10 years of EDS flare ups (partly ‘cause I didn’t know what they were) and it never once was worth it.
"But what about work? My responsibilities? People are counting on me!"
Not today they're not, love. They'll get by because they have to and the world shall continue to turn.
Over the years, I had many uncomfortable phone calls with my bosses to say things like, "Sorry I can't come in today, my knee hurts too much." Yes, they were pissed and they didn't understand.
But you know what's an even more uncomfortable conversation?
"Sorry I can't come in for at least a full week, I can't walk and they don't know when I will be able to again."
Yes, I had that one a few times too. The times when I “couldn’t” miss one day of work because I needed the money. Well missing one day absolutely would’ve hurt my paycheck. The ensuing backlash from pushing my body too hard, however, led to two weeks of complete immobility which utterly demolished that pay period. Don’t be 20 year old me. Take the one day.
Surrender to pure rest. Get your shows, get your sweats, turn off your phone if you have to. This is a time to let your body be in charge, not your expectations or your agenda. Rail against it in anger and frustration or try to force yourself to pretend everything is fine and you will get slapped back down 1000 fold, so please please please just lie down. I give you permission. Lie down.
2.) As you rest, be mindful of your positioning.
Use as many pillows, rolled up towels, blanket piles, etc as you need to hold your bones in a good alignment and to minimize your pain. The goal is to have military-style perfect posture but make it effortless by having pillows do all the work of holding you. Keep your neck in line with your spine, keep your knees gently bent, keep your legs in line with your hips, and avoid pressure into the shoulder joints. By keeping your bones in alignment without muscular effort, muscles realize they can relax, they start turning off their pain warnings, and sometimes issues can actually resolve all by themselves.
I’ve literally had ribs slip themselves back into place just by lying perfectly flat for a prolonged time and chilling out.
Speaking of which…
3.) Ice a little, not a lot.
It should feel clarifying, refreshing, and relaxing. If it crosses into numbing/burning or otherwise bad, put the ice away. Avoid any pushing or pressure, I like to use a thin re-freezable gel pack, or a small amount of crushed ice in a ziplock bag.
4.) Eat well.
When we're hurting and stressed it's completely natural to crave ALL THE COMFORT FOODS. But it's so so important to avoid foods that increase inflammation in the body when you're down for the count...looking at you, sugar and white flour *stern glare.*
There are ways of eating that feel indulgent and satisfy some of those comforting cravings while sticking to protein, hearty veg, and your favorite fruits. Try crockpot stew with tons of root vegetables. Gooey wild rice casserole. Roasted sweet potato fries and baked chicken. Giant frittata packed with tomatoes and spinach and herbs de provence. We now know dark chocolate is an antioxidant, people. We've evolved past a life where "healthy" means "gross."
Personally, my go-to craving is Japanese food. Give me alllllll that miso soup and sushi please. Seaweed and tofu for daaaays! It's my way to have a special treat with tons of umami satisfaction that doesn't make me feel worse afterwards.
For more info on what foods cause inflammation and which don't, check out this article here.
5.) Reach out to your team, but give it at least a full day.
Often the things that hurt SO MUCH and make you go, "Oh my gosh this is killing me I must get help NOW," are actually muscle pulls. An overstretched muscle will kick up a huge fuss, because your body's job at all costs is to prevent a muscle tear. An overstretched muscle thinks it’s tearing, or already has done a few teeny tiny micro tears, so it sets off full scale panic alarm bells. Part of why subluxations hurt so darn much is because they’re a double feature: bones out of place will pinch the nerves (fun) AND the muscles attached to those bones will be screaming “WHERE ARE YOU GOING?? EVERYBODY HOLD ON FOR DEAR LIFE AAAAHHH!”
As someone who has broken bones, recuperated from surgeries, had pelvic bones dislocate, and severely pulled a hamstring, I can tell you out of all those experiences, they all felt EQUALLY bad. Pain is our body's way of warning us of danger, our receptors aren't real particular about whether its from a scalpel or a dislocation or bending too far in yoga class (ME.) Overwhelming pain is just overwhelming pain, don't ever feel embarrassed that it's "just a muscle pull” or “just another subluxation, I’m pretty used to it.”
The bummer here is that as far as I know, no health professional can help us feel better from a muscle pull. The only way to help is to keep it rested in a good position (oh look! it's steps 1 and 2!) and wait it out, maybe gently use ice and take some over the counter pain killers or anti-inflammatories (oh look! it's steps 3 and 4!). Then just give it a day.
By giving your body at least that first day of rest, you allow space for things to calm down enough that you and your helpers will be better able to determine what exactly is wrong and the best way to help it.
Pain that turns out to be a muscle pull will feel very different after 24 hours, pain that turns out to be a slipped disk will not. Pain that turns out to be from a joint problem will feel different, a stress fracture will not.
As much as I adore massage and its magical capabilities, in two of the above circumstances getting a massage will make things SO MUCH WORSE (pulled muscle and stress-fractures.)
Take the day before actively trying to fix anything. If you don’t, and you head to your local LMT/Chiropractor/Physical Therapist guns-blazing, you run the risk of making it worse. Give your body a chance to breathe and tell you what’s actually happening.
And that’s it loves.
The purpose of all of this is to remind your brain and your body that GOOD things are still present. Not all is lost to pain. By making your body rest comfortably, it can remember that not everything hurts all the time. In fact, most of your parts still feel fine and normal. And while it’s easy to be angry about the hard days, it’s harder to hate the world when you’ve got your favorite fuzzy blanket and your favorite food and some relaxing ice that feels amazing and the TV show you love most in the world. When we prove to our systems that things really can be okay, they become closer to okay.
That’s how in the last 8 hours (from beginning this post in the morning, to ending it in the evening) I went from 8 out of 10 level agony, could not move my head or reach for things or generally live without gasping in pain to where I’m at now… which is nearly Fine.
8 hours of everything above, plus some meditation and a lot of Hulu, my neck has regained SO MUCH mobility. The spasm cycle calmed down enough that the pain is highly localized between C6-C7. There’s some residual muscular pain, but doing a compression test tells me it’s a bony impingement (subluxation, we meet again). This tells me that deep tissue massage or a traditional adjustment will probably just hurt me. Knowing this, I can share all that info with my chiropractor, do some low stress physical therapy to ease that joint back into place, and then seek out a light-handed LMT to gently remind those intervertebral muscles where they need to be. And poof! Back to being able to pick up my kids again and live a life.
Not my favorite day, but I got through. And you can get through your bad days too.