(Part 2) Top products from r/ehlersdanlos

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We found 22 product mentions on r/ehlersdanlos. We ranked the 354 resulting products by number of redditors who mentioned them. Here are the products ranked 21-40. You can also go back to the previous section.

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Top comments that mention products on r/ehlersdanlos:

u/MorituraZebra · 3 pointsr/ehlersdanlos

Eccentriczebpajamas, congrats!

Fellow hEDS, got married last July (pre-diagnosis), and I think I’ve got some ideas for you:

For the shoes, not sure where to look - I have really HUGE feel (size 12-13 women’s), so I struggled too, but ended up finding a cheap pair that looked great and kinda worked for me. They were tolerable but not comfortable, and I regret not focusing more time on finding a better pair.

For the registry, I’ve had really good luck with the OXO Good Grips series of stuff (their handles are chunky enough that I don’t tend to sublux my fingers, even gripping hard)

The can opener I use is a blue version of this one: (OXO Good Grips Can Opener https://www.amazon.com/dp/B00004OCJW/ref=cm_sw_r_cp_api_5-Z.zbZ5E94HD)

They also have a kitchen starter set that might be good to work with:(OXO Good Grips 15-Piece Everyday Kitchen Tool Set https://www.amazon.com/dp/B000IELD9A/ref=cm_sw_r_cp_api_Ka0.zbT8JYQX5)

When I can cook, I use these gloves instead of potholders - they’re great for the heat, don’t require as much hand strength/fine motor skills as potholders would, and also do a great job at gripping/opening stuck can lids: (Silicone Oven Gloves Extra Thick Heat Resistant Oven Mitts from Aocome, for Cooking Grilling BBQ and Baking, Quilted Cotton Lining, Waterproof Non-Slip Grip Food Grade Safe 1 Pair https://www.amazon.com/dp/B01J76A9AI/ref=cm_sw_r_cp_api_id0.zbEAKKA40)

For sitting, this chair is my favorite. Looks goofy, but hurts WAY less than anything else I’ve tried:
(Gaiam Balance Ball Chair - Classic Yoga Ball Chair with 52cm Stability Ball, Pump & Exercise Guide for Home or Office, Purple https://www.amazon.com/dp/B006FFR37W/ref=cm_sw_r_cp_api_6e0.zb9Y7MDYQ)

A WiFi blood pressure monitor like the one from Nokia (I have the older Withings version) can be great for helping keep track of your overall health (along with things like FitBits, WiFi thermometers, etc., if you’re into that: (Nokia BPM+ – Compact Wireless Blood Pressure Monitor https://www.amazon.com/dp/B071F2MC29/ref=cm_sw_r_cp_api_Qg0.zb3J5YKKN)

Finally, if you have room, a shower stool can be super helpful if you spend too many spoons in one place and struggle to stand up in the shower (there are lots of types, including pretty wooden ones, but this type is really easy to assemble): (Medokare Shower Stool with Padded Seat - Shower Seats for Seniors with Tote Bag, Shower Bench Bath Chair, Handicap Shower Seat for Adults, Shower Stools and Benches https://www.amazon.com/dp/B06XXZQ4XS/ref=cm_sw_r_cp_api_mj0.zb5C9TRYX)

Oh! And bonus last-minute add: overhead lights that you can turn off from your phone, so you can go to bed and THEN turn off the lights, instead of trying to fumble your way across your room in the dark (they can also turn your room into a bright rainbow disco, if you’re into that): (Philips Hue 464479 60W Equivalent White and Color Ambiance A19 Starter Kit, 3rd Generation, Works with Amazon Alexa https://www.amazon.com/dp/B06Y3QXSGX/ref=cm_sw_r_cp_api_0l0.zb2N2PB53)

Good luck, and I hope you have a wonderful wedding day!


...ETA, this set of pots and pans! They have big rubbery handles that are easy to work with, and they’re easy to clean - they can go straight into the dishwasher: (The Pioneer Woman Vintage Speckle 10-Piece Non-Stick Pre-Seasoned Cookware Set (Turquiose) https://www.amazon.com/dp/B014X6NQI4/ref=cm_sw_r_cp_api_ov0.zb32WQSJ3)

u/-BlueFalls- · 1 pointr/ehlersdanlos

Have you ever considered a career in science writing? I know you said you don’t have any legit writing experience, but that is where everyone starts out at first, and you are so young no one would expect you to have published anything. I read a great book by a woman plagued by a mystery illness and she ended up getting into writing about current topics in science and research. She went to a program at UCSC for science writing, but I’m sure online masters also exist.

https://www.amazon.com/dp/1623367654/ref=cm_sw_r_cp_awdb_t1_Ln-yDb9VWKSS1

If it’s something that interests you, I would suggest to write, write, write. You’re already on track by writing your own book! Additionally, I have some writer friends who have gotten experience as newbie writers for places like Groupon. Not a dream come true maybe, but a place to start, and it’s pretty low key activity wise.

I’m sorry you’re going through this, I think it’s something many of us have to come to terms with on some level (former premed here with a degree in MCDB, but not well enough to pursue further education right now). I know that doesn’t take away the scariness and frustration you may be feeling, but just know you’re not alone in this experience. I’ve had to readjust a lot of my expectations and have definitely re-evaluated my priorities since my health has declined. While I once dedicated myself to my studies and future career, I now focus more on my health and maintaining healthy relationships in my life. I’ve realized that happiness for me is being surrounded by a good support network and ones I love, and being able to be there for the people around me. Different for sure, but still valuable.

One more thing, try not to put too much pressure on yourself. You are so young, you may have had things figured out before, but it is so common for people around your age to be struggling with what they want to, or can do. And you have the added pressure of severe health issues to deal with, so it’s no wonder you’re in a tough spot. Be gentle and loving with yourself as you find your place in the world. Our lives don’t always look how we imagined them to be, and that’s ok. We can find new dreams and passions and be fulfilled in ways we couldn’t previously imagine.

u/klickitatstreet · -1 pointsr/ehlersdanlos

Your own graphic makes silicone look like a great choice. Idk where they got their data from but they aren't expensive! I'm not entirely sure what they mean by 'positionable' but they do everything a single use plastic straws do and it seems like a way to just make a reach against any kind of straws tbh. But here's a link to buy some cheap silicone ones that bend and work really well for anyone that wants to :) maybe we just solved this issue for someone. I hope so.

https://www.amazon.com/Yoocaa-Reusable-Silicone-Collapsible-Straws/dp/B07SJZKJZD/ref=sr_1_41?keywords=silicone%2Bstraw&qid=1563810807&s=gateway&sr=8-41&th=1

As for cleaning them, you definitely don't need to do the silly pipe cleaner thing. I don't do that. I rinse them under the sink and/or put them over a pole sticking up in the dish washer (not in the silver ware part, they won't get as clean in there). That cleans them perfectly. So easy! So..... problems solved! And if you don't have access to a dishwasher cleaning a straw would be such a battle I'm going to guess that people have someone in their lives either full time or a lot of the time that helps them with things that could help them with this too. Can we please care about the planet in addition to our disabilities? Because we can :) I'm really passionate about this; being ill has a huge carbon footprint and we can't just not be sick anymore but we can try to figure out ways to lessen that impact in the ways that are possible. This really is. I'm yet to be convinced that there's someone out there that can't use a reusable straw of some kind.

u/shorthairtotallycare · 1 pointr/ehlersdanlos

That's a challenge, sorry I didn't address that. I just would strongly, strongly advise not rushing into some mad plyometrics or anything like that. I wish I could tell past me the same thing, it's so hard to heal after injury :/

I have IBS - I manage it with diet, but have seen that some use psyllium fiber supplements to help. If (like many here) you have IBS also, maybe that would assist with it? Because, psyllium fiber also apparently expands in the stomach. Which might cause some bloating but might also help you feel more full.

Can you get any protein into your carbs at all? Any protein would help with hunger. I sometimes have eggs with rice and a bit of soy sauce. Fried, but you could mix them in so they're less noticeable. Could do something similar with pasta. Greek yogurt? Cheese?


When I resistance bands, I use these bands. As well as bands like this, for squatting and hip hingeing movements, like this.

I had a ton of PT before I got into bands, and I really recommend it if you can find someone good. Having that guidance is helpful, especially if you have injuries.

For example, before I could really do a proper row, I had to understand how to engage my scapula, and do things like internal and external shoulder rotations. Before I could properly squat, I had to strengthen my quads and hamstrings in less challenging, more isolated movements.

Most people can get away just starting any program without that stuff, but prehab (and rehab, if applicable, as it always is for me) helps to activate stabilizers and is (imo) essential for people with hypermobility. One thing I've learned is that I just can't afford to do just any off the shelf program, without tailoring it to my needs and preparing for it. And being very careful about recovery, listening to my body.

I also found these videos from the EDNF helpful
https://www.youtube.com/watch?v=2LC-qUejV_A
https://www.youtube.com/watch?v=cU5KGVy6JeQ

u/bigglesbilo · 4 pointsr/ehlersdanlos

I would urge anyone to get their active b12 levels tested. Not just their b12 levels. Their active b12. This shows whether you're converting it when it's in your system. I battled the symptoms of deficiency for almost a decade but was told it's all in my head as my levels were in the 2000s. 10 years later and a sympathetic private (I'm in the uk) doctor later when I'm on my last legs, and I pay for genetic testing on top of the active b12 test and bingo...I'm not able to convert b12 or folic acid. You can throw as much at me and I'll never convert it. So I have weekly injections now of the converted form and the improvements are impressive all round. Not a cure but we all know that any help is massively welcome in this battle. I suggest people read up on http://www.b12d.org/ and consider reading this Vitamin B12 Deficiency in Clinical Practice: "Doctor, you gave me my life back!" https://www.amazon.co.uk/dp/1090400810/ref=cm_sw_r_cp_apa_i_cRXtDbBCTRVMN (sorry don't know how to do fancy short links!).

I don't want anyone to suffer like I did. My specialist said most doctors don't understand it and even my prescribing doctor admits she would never have known. Take care everyone x

Edit: if you show to have this, don't let them tell you oral treatment works. It doesn't.

u/DamnItHardison · 3 pointsr/ehlersdanlos

Echoing the PT comments. In addition to PT, I also see a chiropractor to help check and make sure things are in place (jaw, ribs, shoulders, shoulder blades, collar bones, hips and pelvis, and my feet - not just spine). There is a significant difference /decrease in my subluxations when I am actively working those muscles. If my whole upper body is out of place and I'm just kinda stuck and can't move much, my chiropractor will comment that she can tell I haven't worked upper body lately! (I've been seeing her for years and she knows me quite well by this point!) It really does make a huge difference.

One recommendation that I have not seen mentioned is a cervical pillow like the one in the link below. I know it is expensive but given our issues, we need a sturdy pillow. One warning that given to me is to slowly progress yourself into using one of these pillows, meaning only an hour at first and then build up to a full night.
https://www.amazon.com/dp/B000KIH97Y/ref=cm_sw_r_em_apa_gVwXBb45R2SPH

K so my reasoning for the cervical pillow - the typical point of the pillow is to help separate the cervical vertebrate when they are degenerate, as well as to help people realign the curvature of their neck. Both of these I need, personally, which is why I initially got the pillow. But I recommend this to you because when I lay on my side at night, my shoulders pop in and out throughout the night (if I haven't worked out lately), however when I use the cervical pillow, it is so sturdy that it helps alleviate pressure off of my shoulders and they are less likely to sublux.

Other comments:

  • Have you had your jaw checked out? Most EDSers have jaw issues, which can cause more (if not worse) issues with neck, shoulders, collar bones, etc. Especially with the pain you are describing in your shoulders to your neck! I have this pain too and it is caused by my unstable jaw.

  • If you really want to continue using a backpack, wear it up high, meaning little to no slack for the straps. And make sure the straps are equal distance! This will help pressure and make sure you are balanced. Secondly, if you can, use a backpack that has little clips / snaps in the front. This will help with the pressure as well!
u/BrutalHonestyBuffalo · 3 pointsr/ehlersdanlos

I have tried Vit C, I can't say it had much of an effect on me.
I can't say it didn't either - but nothing I could specifically pinpoint one way or the other.

The only supplement I had any success with was Magnesium (specifically this kind - which is elemental as opposed to Magnesium Oxide most commonly found). My doctor has me on 4 tablets a day (800mg).

It has helped with muscle spasms and pooping. :)

I also took some Vit D for awhile (as my bloodwork showed I was deficient) - I got it back up to proper levels with supplements and have been doing better mentally and physically since. Though I have had a lot of transitions in my life since that point - so while I am certain it had a positive impact for me, ymmv.

u/sparerica · 5 pointsr/ehlersdanlos

I don't know about photosensitivity but I've also been diagnosed with delayed sleep phase disorde. My DSPD was diagnosed before my EDS diagnosis, mind you. I eventually saw a specialist at Columbia, Dr. Michael Terman, who has also written a book that I highly recommend : Reset Your Inner Clock

He specifically recommended this light box because it's the same model he uses in clinical trials. In fact, that whole website is great, run by a group Dr. Terman is a part of, it includes self-assessments for the best timing of light therapy.

There is a Q and A section, maybe you can ask about photosensitivity? Or check out their contact page to see if they do phone consultations (if you are in NYC you could probably even make an appointment with Dr. Terman).

u/klukins · 1 pointr/ehlersdanlos

Kosher salt dissolves easiest. If you can grind it up Sea Salt would be good as well. I'd stay away from table salt because you are drinking it in such high quantities and they add iodine (which is good in the small doses you use in cooking but not in these doses).

You can always sub limes for the lemon if the lemon gets boring. Though you'll need to use more limes and lime is harder to juice. You can also use maple syrup or agave sweetener if that taste better to you. Just make sure that it is 100% of whatever sweetener you choose and natural is better.

If you do start doing this regularly one of these is a solid investment. It cuts the time and effort in half at least.

u/lifeofazebra · 6 pointsr/ehlersdanlos


Reaching stick for the win!

It is super helpful for picking up (no pun intended). Especially with laundry so you don't have to bend and reach for your clothes out of the machines.

u/LadyBoobsalot · 1 pointr/ehlersdanlos

This stuff looks and sounds very similar to a (now discontinued?) product I've used. I think the version I used was made by 3M and called CoolWrap or something like that...I bought one package years ago and then never saw it in a store again. It's a sheet of dressing coated in some kind of gel goop that feels really nice and cool.

u/DivineOubliette · 5 pointsr/ehlersdanlos

HUGS! I'm right there w you! Positional fixes help loads, such as pillows, wedges and braces. But TBH giving blowjobs frequently subluxs my jaw and it can be a bit difficult for us both, frustration wise :(

This may be helpful - The Ultimate Guide to Sex and Disability
https://www.amazon.com/Ultimate-Guide-Sex-Disability-Disabilities/dp/1573443042

u/CritterTeacher · 2 pointsr/ehlersdanlos

The backs of my hands are constantly dry to the point of cracking open and bleeding. I use Aveeno's Intense Moisture hand cream, and it works wonders, plus it's non-greasy.

u/stormagnet · 2 pointsr/ehlersdanlos

Here's a weird one: a butter knife.

I use it to open cans that have a pull-tab top without wrecking my fingers. Stick the tip through the loop, lever up.

See also: an electric can opener, this giant pill organizer, these grab bars that can easily be installed in the tiniest of apartment bathrooms without starting an argument with your landlord (priceless!) combined with this hockey tape (put it on your grab bars and crutch handles to keep your hands from slipping) and these anti-slip stickers, (I even put the stickers on the bathroom floor.)

u/taylor-in-progress · 1 pointr/ehlersdanlos

I really like this pillow

Core Products D-Core Cervical Pillow, Midsize, Firm - 22”x 15” https://www.amazon.com/dp/B000ESPJX6/ref=cm_sw_r_cp_apa_4jnCzbQG7NRCE

u/Melimathlete · 1 pointr/ehlersdanlos

When anything I do seems to torture my lower back, I find that laying on the ground with my legs up at a 90 degree angle on a chair helps relieve the strain. Like this: https://static1.squarespace.com/static/54eb923de4b0440df7ae7c7c/t/551aea79e4b02356b77db759/1428444860042/
It takes it from so bad I'm crying to just don't move and maybe I'll be okay.
They also put one of these https://www.amazon.com/Leg-Elevator-10-high-20-30-5/dp/B0008D7UKM under my knees when I had an MRI and it was very comfortable.
It seems my legs really need to be parallel to the floorto relieve the pressure from my back.

u/DieFledermausFarce · 1 pointr/ehlersdanlos

50mg Vyvanse taken with 2, 50mg 5-htp capsules, specifically this one. It's the only brand that's been effective for me. Vyvanse gives me anxiety and worsens some POTS symptoms (and kinda turns me into a sadistic bitch) on its own but this combo has been magic for me! Saved my job and helps me be so much more productive and social.


Edit: I started at 30mg Vyvanse and worked my way up to my current dose. Starting off at 50mg would have been a nightmare. Also, eating breakfast before I take it is mandatory! Otherwise it hits (and disappears) too quickly. The 5-htp makes the "come up" and the "come down" much smoother as well so I don't feel cracked out or get dropped on my ass at the end of the day and sink into a depression. I literally think this combo saved my life. As I know it, at least.