Here are some of the best gadgets and tools the online zebra (Ehlers-Danlos Syndrome) community has found to help those with hypermobility and chronic pain. Check back periodically for updates and additions as I glean more tips and tricks from the EDS support community.
I am primarily listing items that have been recommended by multiple patients. However, nothing works for every single body – you will want to find what works right for yours regardless of our recommendations. There is inevitably some trial and error involved for all.
You might want to get some guidance from a physical therapist or orthotist where appropriate. All of these items are available over the counter. You will need to consult with an orthotist (orthotics specialist) or physical therapist (physiotherapist in UK) for other items such as KAFO’s and AFO’s (braces for knees and ankles which require special fitting especially on growing children). Wheelchair notes are at the bottom, since there are so many to choose from. Good luck!
Bracing and joint/body support:
- Theracane (helps stick ribs back in place in front or back, shop around online)
- Electric JAR opener (yes, they exist, and help a LOT)
- Wrist braces (there are many to choose from on Amazon and at most drug stores)
- Knee braces (those with loose knee caps have sworn by the Cho-Pat Patellar Stabilizer)
- Female rib brace
- Male Chest Compression Vest
- Silver Ring Splints (for holding knuckles in place. A hand orthotist can also fit you for cheaper plastic Oval 8’s as well).
- Smart Crutches (new style forearm crutches)
- SideStix another great ergonomic forearm crutch maker
- FlexSticks adjustable 3-legged walking canes
- Baja 637 Back Brace from Cropper Medical- can help with slumping and kyphosis
- Stander – floor to ceiling pole with curved handles to help you transfer yourself
- BiaCare leg assist – custom compression cast for those with lipedema “shelves”
- The Body Support Store – my friend John Ferman’s great online EDS support store
- Chin Up Strips – helps keep mouth closed to avoid obstructive airway apnea
- TENS units (several types, ask your physical therapist for guidance)
- Microstim units (several types, ask your physical therapist for guidance)
- Quell wearables (2015) – may work like more portable TENS
- Blanket Booster (helps keep weight of blankets off of your feet, easing neuropathic pain)
- Oska Pulse wireless pain relieving device (reviewed 2017 here)
- Epsom salts (warm salt baths help relax muscles and ease pain)
- Thermacare Heat Wraps (available on and offline at most drug stores)
- Heating pads and shoulder wraps (most drug stores carry a nice variety now, including some portable ones!)
- Quantum Heat Packs (another form of portable, re-usable heat pack)
- Therapaqs – flexible re-usbable heating/cooling packs (can wrap around ankles, elbows)
- Power door opener /assistance (look for other companies also, may require special installation, shop in your area for installers)
- Detachol – anti-bacterial skin adhesive remover for hospitals to avoid skin tearing when removing adhesives from IV tape, etc. (available on Amazon for home use too) – one patient gave it a good review, saying it really helped on her fragile skin. (EDS skin tears very easily as many of you likely know already.)
- Instantpot programmable pressure cooker – just got high reviews in my group
Wheelchairs (manual and power)
Obvoiusly there are tons of different wheelchairs to choose from, new and used, so I’m just offering some tips here to help you get the best one for your body.
Since you will be spending significant time sitting in them, and we have such loose skellies (skeletons) and “shift” so easily, I highly recommend spending the money to be sure you get a good well-cushioned seat in whatever brand or style you buy. (Manual or power).
I strongly recommend avoiding the cheaper “sling” seat whenever possible in the folding manual chairs (like you find at hospitals), unless you have no other option. They can cause issues with your hips and pubic bones shifting and pinching.
I also found the solid foam padded seat of some cheaper power chairs to be too jarring to my fragile spine as I went over bumps in them. The better power chairs have both suspension systems (highly recommended) and better seats, as well as more easily maneuvered control sticks. Istrongly recommend the inflatable (and therefor adjustable) Roho seat for a power chair if possible. They are worth every penny, I promise.
Further, those with POTS (BP issues, need to recline a lot so as not to pass out) might want to look into power chairs that recline. (They exist!) I myself was blessed to score a mint condition used reclining Pride Quantum 600 series power chair with an inflatable Roho seat that I can’t recommend more highly.
Yes, they may be more expensive, but they can keep you from passing out. You might also invest in one of the relatively light, portable albeit static “anti-gravity chairs”, basically a reclining lawn chair for when you need to attend meetings and need to recline. (Great for conferences!)
And here is a great introduction to getting started with wheelchair use from Mobility Works. I hope this information helps guide you to the right chair for you, especially if you will be using one more than not for any length of time. It’s important that it fit your body and meet your medical needs as well as your finances.
Please send additional suggestions and reviews to firstname.lastname@example.org or share in the comments below or via the contact form above in the menu, thanks!