Let's be honest, it's not easy being in pain and trying to navigate the intricacies of stair climbing, jar opening and bed rolling. Below is a collection of items that I have used personally, and ones that have been tested by other Zebras and noted to provided relief of various symptoms. Every individual person with EDS will present a different set of symptoms and every individual need is unique. I am in no way a medical professional. I simply want to compile a list of options that are available to us to help us with simple daily tasks. It is so easy to become consumed by pain and have one little thing like opening a jar ruin something important, like your niece's graduation you need to go to but now you're in too much pain to move. It can become so overwhelming when the opportunities to connect with family and friends are stifled by our disabilities and struggles. I'm not saying these items will cure your pain either. These are tools and aides that will help you become a little more independent and give you the ability to to hopefully live life a little easier, with a little more joy.
*In honor of being fully transparent, I want to note that the majority of these links are associate links, where I make a small commission for your purchases, at no additional cost to you, much like an ebates link. I use these funds to maintain this site, and to fund research projects for content. If you prefer not to use these links please feel free to google the items in a separate window.
TECHCARE mini massager tens unit $24.99
A personal TENS unit that is affordable, and a non-invasive way to help your body heal itself without the use, or minimal use of prescription drugs. I do no negate the validity, use, or need of medication, I only wish to promote healthy options to supplement your pain management. If in the end it helps remove the need for medications that can cause complications, and awful reactions, that's an amazing feat for patients. You can click on the photo for a direct link to this unit, or click here! Bonus - these have LIFETIME warranties!
Blood pressure monitor
I never thought I would want one, but when you have orthostatic intolerance, POTS, bradycardia, or any other cardiac issue related to EDS, these are quite the handy tool to have on hand. Not only for your own sense of sanity at times, but also to help with critical information in the event that you need to share any such information with your physicians. This particular on is $26.99 right now on Amazon. So the options are at lease affordable.
Ehlers-Danlos (EDS) Medical Alert Bracelet Charm
I'm sure I'm late to this party, but look at these specialized ID bracelets! Click on the photo to go straight to the Etsy Shop for MyIDSquare, or here for the direct Amazon link!
I realize this one may not be high on the list, but I've noticed my fingers going numb lately scrolling through pages and thought these might help, testing out my theory. I feel like a stylus will help alleviate the pressure contact. Have you tried it? Drop me a line!
Take a breather
Sometimes what you need is to sit down. Grab a cup of coffee, tea, water, or just sit, and read. I think we often forget how quickly we can become fatigued, and short breaks are so important in PACING techniques, and for whole body wellness. Here is a great book to start with. To boot when you purchase this book you're contributing to the EDS community, connecting with fellow EDS'ers and taking care of yourself.
1/2-inch (15mm) Chakra Art Yoga Knee and Elbow Pad by Crown Sporting Goods
INSASSY (TM) GARDEN KNEELER WAVE PAD - HIGH DENSITY FOAM FOR BEST KNEE PROTECTION (BLUE)
I've been meaning to post the kneeling pad I use in the backyard, which s just a folded up protective mat, and then I saw the first episode of Just5Minutes with EDS Wellness, and this was one of the first things Kendra mentioned. I could not agree more that these are life savers!
IROBOT ROOMBA 650 ROBOTIC VACUUM CLEANER
I know how much of an investment this one is, but it has taken me several days to recover from cleaning on more than one occasion, and in bouts of partial immobility, this little robot is an anxiety life saver for neat freaks!
DRIVE MEDICAL BATH BENCH WITHOUT BACK
Showers. They shouldn't be so unbelievably tiring. Have you considered a bathing chair? I keep rejecting the thought, but every time I step in the shower, I wish I had one. Amazon has a wide selection of styles available.
Wooden Shoe Horn
Wooden to prevent temperature sensitivities that a metal shoe horn might provoke. Shoe horn, because let's be real even though you might be in your 20's or 30's EDS doesn't make bending over easy, and you might pass out when you stand up, so let's prevent accidents! Plus it has a handy little loop to hold onto, because your proprioception might be ff, and you might drop it if you didn't have one!
I can say with great enthusiasm, as someone who suffers from chronic hip pain and subluxations, a body pillow has made a huge difference in the mornings. My hip isn't ringing with pain in the morning EVERY DAY now. I've had several subluxes over these holiday activities, and I feel like my recovery time is shorter as well. These pillows are also customizable, filled with organic, non-toxic Kapok filling. Because with our already compromised systems, we don't need to add fuel to the fire.
Norpro Silicon Jar Opener
These are so easily overlooked. They are so easily stowed away, to be retrieved at the right moment.
Cuisine Parfait Jar and Bottle opener set
For those who need a separate tool, or have different points of hand weakness and need a different angle.
Silicon twist jar opener
Jars and containers have been an interesting thing to get used to, in the essence that I never realized I would not be able to navigate opening a jar or any container. I feel like Susan from Monsters vs. Aliens. At least we have options.
Kuhn Rikon Slim Safety Lid Lifter, White
Can opener got your CMC joints down? I've had a few, and this one seems to be the smoothest. I personally prefer to have a small one although I'm sure I should just get an electric can opener, this one doesn't create as much stress on my hands as a regular metal can opener. Bonus: you won't cut yourself on the safety lid. Currently $14.55.
Oster FPSTCN1300 Electric Can Opener, Stainless Steel
A reasonably priced electric can opener for those who prefer a stand alone unit. Currently $18.99
I'll be linking to several items from Bauerfeind USA here for you. They have a great video about several of their items that are popular among the EDS community. This one is the Sacroloc. As you can see it sits much lower on the back, and is helpful, from my experience, with facets syndrome (there are gel acupressure, removable, pads inside that help with pain management), hip subluxing, and general stability. I have a hip that subluxes more than the other one, and I was unable to get a prescription for the hip brace itself, so I purchased this one. It definitely helps with walking, lower back pain, and while it does not necessarily prevent a sublux, I do feel that it helps immensely with stabilization, which I know you know how important that feature is. These start at $152 depending o the size you need.
BAUERFEIND SPORTS knee support
I've had my eye on the Genutrain from Bauerfeind for quite some time, and I had my knee sublux a few weeks ago, and I feel I need this more than ever. Bauerfeind has recently come out with a "sport" line, shown here, that is considerably less expansive than their original line, but seems to carry all of the same important stabilzation points. The outer green casing carries a stay to help stabilize outward subluxing, which is what happened to me, a ring to stabilize your kneecap, and medical grade comfort mesh that reshapes itself with washing! This Knee Support is $84.99, which is a great alternative to some of their knee braces which can run you $168.
bauerfeind sports ankle support
I haven't rolled my ankles in a while, until these last few days, however I know that is a serious concern among many EDS sufferers. These are one piece and the green strap criss crosses for 360 degrees of support. As with all Bauerfeind products these are purchased in Left and Right sides and are $69.99 each.