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!
POSTURE:
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.
MOVEMENT:
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 pushing 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.
EXERCISE:
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!
PAIN:
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.
BRACING:
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.
Such a helpful list — for me, it taught me more about your daily lives and the adaptations you make. Thank you!
Thank you, friend 🙂
HI! I just happened to come across this blog and it’s been a bad day for me…finding this is making it better. My daughter’s pediatrician just recently expressed his concern that she has ED. We have an appt with a geneticist to determine if this is truly the case…in MAY! UGH. So in the meantime I’m whirling from not knowing what to do for her. We have her in PT, but they aren’t totally 100% sure what to do for her other than show her how to strengthen some muscles. Both of her hips are now “popping” as she calls it, and it’s loud. And just recently her knee gets all wonky. I’m just so glad I found your site, hopefully it will help me help her.
Hello! And welcome to our wonderful world. I am working on a “What Do To” post for newbies (it has been a goal of mine for a while now, but I will make it happen as a New Year’s goal! I promise!) In the meantime, having her in PT is great. Her therapists should not only focus on strengthening, but assessing the imbalances in her body that are creating tension (muscle trigger spots) and weakness that would prevent her from stabilizing and strengthening joints. That can shift from day to day, week to week, so they should stay sharp! She needs good, soft tissue work and warm ups. Her fascia may be excessively tight in some areas, and dry, dehydrated muscles can’t strengthen! All PT must start with body assessment and soft tissue work. When it comes to the actual exercises, LESS IS MORE. Go low and slow (low resistance, low reps, increase very slowly!) The other things I would recommend you do are follow my Facebook page, where I more often discuss health tips (FB/FlexibleFamily) go to the Ehlers Danlos Society page and devour whatever resources they have (articles to help educate your doctors, teachers, family members, etc.) and comb through the Health category of my blog for past advice I have given. Sometimes the EDS tips are woven in and among seemingly non health posts (for example “If the Shoe Fits”) so you can try searching for the EDS tag or pain or posture or other health related items you are researching. Posture, posture, posture is key for this child. Helping her sit/stand correctly is huge and will prevent a lot of future injury. Good luck!
21 Daughter recently diagnosed after years, years, tears of pain and going all over to try to figure out why
Please keep me on your list
Thank You!
Temple- Invest in a book written by PT Kevin Muldowney “Living life to the fullest with EDS”. Read and ask your PT to use and follow so he can provide your daughter with the proper treatment. Kevin is also willing to speak with your PT if they have any Qs. Priceless.
Great recommendations Ashley. Some I wasn’t aware of.
Thank you for helping Temple, Kathie! And thank you for your wonderful feedback 😃
Thank you! I will definitely check it out. My concern is the place we take her for PT thinks that long term treatment isn’t needed as she has full mobility, etc. We only have 4 more appts. There are only 2 places in my town to take her for pediatric PT and the other isn’t an option. I am going to pass along all your information though and we’ll see what happens. Thanks again!
Sadly, this is our reality at this time. While MS is recognized as a condition that requires “maintenance PT,” EDS has yet to get that recognition with insurance companies. And the truth is, we don’t need to stay in PT as long as we are functioning well. I go in and out as needed. If a person is injured and not progressing, then they should be able to stay in PT by medical necessity, as determined by the therapist. If you are worried about having access to pain control by using soft tissue work, have you considered seeking the care of a sports massage therapist? Not only do we see a physical therapist, but we use a chiropractor and a massage therapist to accomplish all of our “therapy needs.”
Is it just me or are the links or pictures to half the products she’s talking about missing?
Whoops! I will make sure to go through and fix the links. The products can be bought from different vendors, so from time to time, I guess I will have to check to make sure it’s still an active link. Thanks for the feedback!
Thanks, there wasn’t enough info to figure out what product you were talking about without either a picture or link.
Will work on it this week – are there any problems in particular you need solving right now I can help you with?
I was curious about the Bauerfeind braces
Actually, that link is still active – can you try looking at the blog from a different device?
Interesting, I’m using a desktop PC. With Firefox there’s no links/images but I can see it with IE
I don’t see links for most of these, are there pictures that aren’t rendering on mobile or something? The problem persists even when I request the desktop site.
Sorry about that! Try a different browser. I will have to update these links when I recover from surgery 🙂
Actually, I have checked all of the links, and they are still active! Maybe try a different browser?
What support would you recommend for a weak neck and shoulders that refuse to stay back?
I would use a product and two exercises. The Posture Pro (reviewed here: ) will help put the curve back in your neck, which is no doubt straightened from its forward position. Also, you should do chin tucks to try to get your ear over your shoulder. Do them several times a day (not too hard, and make the motion come from the muscles at the back of your neck, not the front of your chin or neck, or it will just increase the trigger spots.) The other thing you want to do is bring your shoulder blades together and down: they probably wing out from weakness. Again, the motion should be in the middle of your back, not from throwing back your shoulders. It’s OK if it’s a small movement. You can do this several times a day, even when you are doing other things, like sitting in the car, in a chair, etc. If you have bad trigger spots in your upper traps, you are going to want to work on those with a tennis ball, foam roller, or other product to soften them up so that you can use the muscle again. Hope this helps!
Hello 🙂 I’m a stay at home mother of 2 with classical EDS and I’ve been having severe hip and thigh pain and my doctor’s just gave me tramadol which I won’t even take most of the time because I can’t function with my kids, do you know any products that would help?
Hi there! First of all – HUG – I’m sorry you are suffering. Tramadol is pretty rough on some people. I myself have had good luck with a drug called Arthrotec, which is an NSAID like Ibuprofen, but it is mixed with another medicine that protects the stomach, so one can take it longer term. (It is prescription only.) I do have several suggestions (links in my post) for non-pharmaceutical suggestions which may help you out, though getting to the root of your problem is going to be important. Off the top of my head, a TENS unit is a must. That will help block some of the pain, and you can move the electrodes around based on where the problem is. I think a decent skin analgesic is important too, like Biofreeze or even lidocaine patches (ask your doctor for a script.) But I really want to know WHY your hip and thighs hurt, because that is going to determine what pain control method is most successful: do you have loose hip joints that keep subluxing? (You may know because your hips click, or you have a waddling gait from side to side, like when you were pregnant.) Then you may need an SI back brace worn low on your hips to hold your femurs in place, and you need to consult a pelvic Physical Therapist for pelvic floor strengthening. Do you have nerve issues from herniated or bulging discs? Then you may need to consult with a neurosurgeon to evaluate the degree of degeneration. Just fixing the pain in these cases would only serve to cover up an underlying issue which may be getting steadily worse. I wish you the best of luck!