As a patient with Ehlers-Danlos Syndrome (EDS) and a mother of two patients, I have spent the better part of the past several years finding products to help EDS patients like us. Mainly, we need things to help our posture, adaptive equipment, and alternative pain control. Some of the things I have bought have worked out, and some of them have been a total bust, but what they all have in common is that we have purchased and tested out every one of them ourselves. If it is on this list, it means that it works for us!
Perhaps the most frequent questions I get are the products that we use to help us with posture. My kids and I have lumbar support cushions for the car, for the chairs in our house, for traveling, etc.
The first two products are ideal for tricking out your home and school, and the second two are what you will need to make your car more ergonomic. The thicker part of the wedge pillow should go to the back of the seat in order to fill in the dip of the “bucket” seat that too many car companies are making standard in their vehicles. (Very bad for EDS!) You want those hips to be above the knees. If your child has a weak core, and has trouble sitting up straight, this may also be a good cushion to put in a regular chair. Having the hips above the knees tilts the pelvis and makes it easier to sit straight naturally. (That is also what the Backjoy does, but they are made for adults.) My family also uses the wedge pillow and Superroll to make our travel wheelchair more comfortable.
#TheStretchySon had the weakest core of all of us. It was so profound, by second grade he couldn’t hold his body up in a chair, and he couldn’t use his arms or hands to write his schoolwork. The county OT recommended this “wobble stool” for him to sit on to make his abdomen work, and after a year, he was remarkably improved (like, has a 6-pack!) The best part is the school bought it as a part of his 504 Plan. Now, he starts his day out on it, but moves over to a regular chair if he gets to tired to work his abs anymore.
This chair is great, but has to be pushed by an able-bodied person (which is best for an EDS person, since we should not be rolling ourselves anyway.) The cushions I recommended fit into the carry bag. The bag rips, so travel with duct tape wrapped around a credit card, and the tools that it comes with in case the bolts loosen.
Our use of “Bertha” the Blue walker has to be limited, but since EDSers cannot use crutches (bad for arms!) and our wheelchair has to be pushed by someone else, sometimes the only way that we can nurse a leg injury, correct a bad gait due to a very loose pelvis, and increase our access to sitting time in public is to use one. It still puts pressure on the arms and increases neck tension, but it is a tool that we need from time to time. This one is the best – the wheels rotate 360 degrees, the seat is a compartment, and the saddlebag is useful. My daughter has taken this to school when she has injured her leg, and it has been a lifesaver.
If you have watched my foam roller vlog, you know how much I love it. It is great for back pain, working out trigger spots, fixing subluxed ribs, and developing good core strength all at the same time. A 4×36 white foam roller is a must-have for every EDS family!
If you are waking up in the morning with neck pain or migraines, chances are your pillow is not correctly supporting your cervical spine at night. I love this pillow, because it allows you to set the height using a “balloon” underneath, while still feeling like a regular, poly fill pillow. The directions say to start by filling with 8 cups of water – this is TOO MUCH for most of us. Cut that in half, and start with 4 cups, and tweak from there. You will need to “burp” out the air every 6 months or so and add a little more water from time to time as it evaporates, so if you wake up in pain one day, it’s a good indicator that it’s time to give your pillow a tune up. Replace it every 1-2 years as needed.
P.S. I started having trouble with my water pillow, so I tried the My Pillow based on a recommendation from a follower. I do like it so far, though it has only been a few months.
One thing I am passionate about is the use of non-pharmeceuticals for pain control. Not only do the experts in our field caution us against the use of opioids time and time again (I have been to two National conferences now, and it is a dominant theme among all speakers) but chronic use of any medication can have a taxing effect on our livers, kidneys, and have side-effects that can be as bad as what we deal with in the first place. Some medication is necessary, but any way that we can fix a problem without it is best. We absolutely love Kinesio tape! It is like a muscle bandaid. Though people once thought that it needed to be applied in specific patterns to be effective, the new thinking is just slap it on where you hurt, and it will do good. It lifts fascia from your muscles, increases lymph and blood flow, decreases trigger spots, and acts like a flexible “brace” to minimize subluxation risk without causing the muscle weakness that braces often do. When paired with Biofreeze (optional,) your painful skin is numbed and prepped to wear it for days, even in the water. If you have sensitive skin, make sure to do a patch test first! EDS people often have trouble removing it. (Remove it gently when it is wet – use an orange essential oil if necessary, which helps break down the glue.)
Though I have not used this particular TENS unit (I got one through my PT years ago) I searched for one that was highly rated (5 stars!) and not very cheap looking. I am probably going to buy this one myself, because the ICY HOT ones I got for my kids at the drug store that we paid almost as much for have not worked out. I cannot emphasis enough how much we rely on the TENS for pain control, be it for bad headache days or bad lower backache days. I know we are not supposed to “push through” pain, but for real, sometimes you have to suck it up go to the recital and support your kid, and the TENS has broken up many a horrible headache caused by over-tight traps.
These lightweight compression gloves are great for improving circulation and decreasing finger subluxations. Also, the grey fabric is fashionable, so they pair well with regular clothing. This company also makes toed-compression socks! If you’re sensitive to the stitching, some people wear them inside-out.
For a good, basic compression sock, these are not impossible to get on, but hard enough that they are doing work. I can tell they are compressing, because I have the skin marks to prove it when I take them off. On “weak ankle days,” rather than put a brace on, I try to use kinesio tape and compression socks first to provide extra stability. The kids and I each have a pair, and I just bought the smallest sized men’s sock for them (and it works.)
Part of the long-term problem with arm pain is that we sublux our wrists at night with our bendy arm positions. This can be minimized or prevented by wearing wrist protectors at night. Your little rubber ducks might be resistant to this idea, but they will thank you later when their forearms are not riddled with as much scar tissue.
Weak wrists often mean overcompensating – if you watch an EDS person hold a writing implement, they often hold it “wrong” or they “white knuckle” it (grip it tightly to the point of turning their knuckles white.) This causes muscle fatigue and further weakness. We need to teach ourselves how to relax that grip! Products like this one are a good way to ensure that happens.
Even though it is a last resort, braces are necessary to provide stability when your physical therapist has advised it. One of the types of braces that is hardest to find is one that can support the low back/loose pelvic floor and hips that many of us struggle with, especially during and after childbirth. This brace by Bauerfeind is AWESOME as are almost all of their products. Some of them require a prescription, so check their website for ways that you can get fitted. This one does not.
I hope this list has been helpful! Check back from time to time to see if I have added anything to it, and let me know if a link doesn’t work for some reason. Also, please let me know what YOU think about these products! We all need to learn from each other, and my opinions alone are not enough.