Helpful Gadgets

Portable Heat Wrap Label

Portable Heat Wrap

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:

Pain Management:

  • 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)

Warm Things

  • 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)

Miscellaneous

  • 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)

Wheel Chair Manual Image

Wheel Chair Manual

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 info@ohtwist.com or share in the comments below or via the contact form above in the menu, thanks!

Additional Resources

2 Responses to Helpful Gadgets

  1. BirdLoverInMichigan says:

    Hi Jan.
    I have EDS hypermobility and am seeing a new pain doctor in MI. He noticed my poor posture with shoulders forever forward and beyond my control. In addition to pool therapy, injections in my knees, occiput and a future round of injections for my lower back, he asked me if I wanted a back brace. I said sure, especially since I’ve already met my insurance deductible for the year (in March!). He gave me one that’s been utterly fantastic and should have been offered to me YEARS ago. It’s made by Cropper Medical and it’s the Baja 637. It’s relieved my low back pain and allows me to stand straight for once in my life. It also makes sitting upright a somewhat decent experience for me, the gal who always had to slump and shift positions. This is not a brace for just anyone with low back pain; it’s probably around $450 and designed for people with kyphosis, which I clearly have, along with lower back instability.

    Anyway, just thought I’d suggest this for your site.

    • Jandroid says:

      Wonderful, thank you so much for sharing such helpful experience about that brace. Sure, maybe not all can afford it, but it sure sounds helpful for those that can. (And like something I should look into!) Every thing helps. I’ll try to add it above soon too. Sign me – Also Kyphosed & Slumped, – J:^p

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