14 Things to Put in Your Ehlers-Danlos Syndrome 'Crisis Kit'
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Wouldn’t it be great if you could know exactly when an Ehlers-Danlos syndrome flare-up or emergency would happen? Well, as any EDS zebra knows, that’s not exactly how EDS works. You could feel OK one minute, and the next minute be dealing with a dislocation, sudden increase in pain or flare-up of a co-morbid condition that tags along with your EDS, like dysautonomia, mast cell activation disorder or migraine. When an EDS crisis hits, having a few “emergency supplies” on hand can help you get through the tough moments — or even tough days, if your crisis means you have to go to the hospital. And, you might find having a crisis kit of EDS essentials ready to go at all times helps you feel more prepared and empowered to deal with whatever EDS throws at you.
A crisis kit can be geared towards helping you when you’re home with a flare; or, it can be filled with supplies that will help you when you’re out and about. In both cases, you’ll want to include supplies that quickly minimize symptoms, and comfort you both emotionally and physically. We asked our EDS community to share what they would put in their own “crisis kit.” Check out their suggestions below, and let us know what you would add in the comments below.
1. Ace Bandage
When a joint slips out of place, wrapping it can help stabilize the joint, minimizing pain.
“Different-sized Ace bandages. When I dislocate something once, it will continue popping out of place unless I stabilize the joint,” said Kaylla S.
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Let’s face it, being in an EDS emergency isn’t exactly fun. Stash a few of your favorite candies in your crisis kit to give yourself something sweet to enjoy as a reward for getting through it.
“In my emergency kit I always hide a piece of candy, usually a strawberry Starburst, because if I’m getting out my emergency kit I’ll need a little something to make me smile,” explained Emily S.
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Braces provide firm support for unstable joints, so it makes sense to always have a few on hand for emergencies.
“Wrist brace! Sometimes the pain in my wrist (from a torn ligament) is so bad I can’t hold a fork to feed myself. Here’s hoping physical therapy helps,” said Sarah L.
“Braces! I carry my wrist splints (pre-fab and molded to my body by a specialist) everywhere that I can, because I know they’ll help. If I can keep stuff in, I can lower pain levels,” said Saylor A.
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4. Small Blanket
Cuddling up in a blanket always helps in a flare, right? In addition to warming yourself up in a cold hospital room, you can also use it as a cushion, to block sunlight or even just as a calming object to hold if you’re stressed.
“One of my go-to’s if I am traveling is a standard hospital baby blanket. Migraine? Eye mask. Shoulder subluxed? Sling. Swelling? Keeps ice off your skin/provides a soft brace,” said Nikki L. “I don’t always have room to be prepared for everything, but the blanket holds me over until I can get to what I actually need. Being a broke college student made me resourceful.”
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5. Salty Snacks
If you have EDS, there’s a good chance you also have postural orthostatic tachycardia syndrome (POTS), a common comorbidity that causes abnormal increases in heart rate and drops in blood pressure, among other symptoms. Increasing your fluid and salt intake can help fight lightheadedness and low blood pressure, and can be achieved by eating salty foods or even adding extra table salt to other foods. Even if you don’t have POTS, you may find that a quick, salty snack gives you a little boost.
“Crisps, millions of crisps. Crunching helps with nausea and as a distraction from pain and salt helps to balance out blood pressure. All the crisps,” said Amy S.
“Yup, chips. The salt can bring me out of a spell quicker than anything,” Sharon H. agreed.
Angie Kostka said she would include salty foods or pickle juice.
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6. Phone Charger
You never know when a crisis might hit and how long you’ll be away from home. Keep an extra phone charger with you so you’re never stuck with a dead battery.
“A practical thing I take with me everywhere is my phone charger — for those unexpected times that I end up in an urgent care or hospital. So at least I have the capability to recharge my phone and reach out to who I need to (or distract myself),” said Krystle S.
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7. Portable Entertainment
Make sure you’re never stranded in a waiting room or even at home with nothing to distract and entertain yourself by keeping some of your favorite forms of entertainment handy, like an e-reader, tablet, podcasts or a smartphone or laptop with access to the internet for streaming movies and TV.
“Some of my favorite entertainment for when I’m hurting is audio entertainment — podcasts and audiobooks. I can take it wherever I want, close my eyes and get lost in the story, get away from the pain,” explained Nicolette O.
“My phone to talk to my EDS fam on Facebook. I would be so lost without you guys!” said Helen M.
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8. Medical Info Card
“I always carry a card shortly explaining what EDS is, with my name on it in case I pass out or need to go to the hospital,” recommended Tilde B.
“Ace wraps and MISC braces, phone charger, medication list/medical history printed in case you can’t communicate, instant hot packs, compression socks,” suggested Abbey R.
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9. Electrolyte Drink
If you’re consuming large quantities of salt due to POTS, you’ll need to also increase your fluid intake to prevent dehydration. Drinks that replenish electrolytes can help you stay hydrated (as well as, of course, plain water).
“Salt, Gatorade, heat/ice packs, KT tape, pain meds or braces because those all can help at that immediate moment! Especially salt and Gatorade, they can help almost immediately,” said Lauren B.
Megan M. also recommended Pedialyte.
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10. Portable Ice and Heat Packs
If you’re keeping your “crisis kit” at home, you can easily include your favorite electric heating pad and stash some ice packs in the freezer. But if you need your crisis kit to be able to accompany you outside the house, portable heat and ice packs are the way to go. You can simply “snap” the pack to release the heat or ice. Check out more portable heat and ice products.
“My TENS unit and heating pad. When pain is bad I could not live without those two things,” said Caitlin W.
“Gauze, Band-aids, the instant ice packs (the kind that you break to make cold) pillows, pain meds and possibly a mobility aid. I sublux things and fall so often that each one of these items would help!” said Amanda E.
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For the times when you’re in a doctor’s office or hospital and can’t watch videos or listen to podcasts and music with the sound on, you’ll need a pair of headphones. Noise-canceling headphones have the added benefit of decreasing sensory stimulation.
“A heated blanket or heating pad, braces, my neck pillow and meds. But for emotional comfort I need my soundproof headphones, my music and some YouTube or Netflix,” said Amanda U.
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12. Soft Clothes
The last thing you want to be wearing in a health emergency is tight, uncomfortable clothes. Stash a pair of soft leggings, socks and your favorite cozy T-shirt or sweatshirt in your crisis kit so you can change into a more flare-appropriate outfit (plus, you’ll have a change of clothes if you end up stuck in the hospital for longer than you expected).
“Braces, pain meds, cozy sweatshirt, leggings (in case I’m wearing jeans that day and it’s hurting me),” said Libby E.
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13. Topical Pain Salve
You may opt to keep some of your pain medication in your crisis kit, but it can also be helpful to have your favorite over-the-counter balm on hand, too.
Alesha B. recommended Dragon Balm or Tiger Balm and Biofreeze gel for pain.
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14. Stuffed Animal (or Small Pillow)
In an emergency, a small pillow or stuffed animal can support painful areas and help you rest. A stuffed animal can also help you feel just a bit more comforted during scary situations.
“My stuffed panda because it helps me when my ribs hurt,” said Megan M.
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