(Part 3) Top products from r/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)

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.

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.

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

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.

BPC and growth hormone secretagogues could be prescribed by a doctor and filled through a compounding pharmacy such as https://tailormadecompounding.com/ but most doctors aren’t familiar with peptides yet. Life extension/anti-aging clinics prescribe growth hormone secretagogues more often though. Sites like https://www.peptidesciences.com will sell them directly without a prescription, but they aren’t labeled for human consumption. nootroo sells a new stable version of BPC-157 that is more stable and probably works orally, but these compounds are generally injected into fat with insulin syringes for systemic effects.

You can buy creams with peptides, but they are usually vague about the specific compounds. This one list specific peptides, but no GHK. However, GHK copper is available to add to creams. If you buy creams with legitimate bio-active peptides they should ideally be refrigerated.

Peptidesciences has info on cosmetic peptides like matrixyl, so you could decide if they seem appropriate. Obviously applying face cream to an open wound might be a bad plan.

Edit: found a cream with GHK, but adding GHK to a cream with other peptides is a good option. I’m not familiar with this product, just found it with google.. I do injections rather than topical. https://store.reverseskinaging.com/Super_GHK_Copper_p/61.htm

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.

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.

Yes strengthening, more PT, definitely look in Muldowney

But what helped my mum who has had 6 hip replacement was this brace - https://www.amazon.com/Cramer-Replacement-Sporting-Injuries-Compression/dp/B0001DK4OS You have to play with the tightness of it but that's true of most braces.

And I use this for my unstable SI Joint and it does keep my hips from wobbling and I swear this brace is the only reason why my hips haven't subluxated yet. I am terrified of this and being as proactive as I can be to prevent it, as I've seen what my mother has gone thru too many times. https://www.amazon.com/gp/product/B016AY23V8/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1

Anywho, it makes car rides and prolonged sitting much better, I preload with an NSAID, slap Lidocaine patches on and get as comfy as possible. Remember if you are talking pain meds of any kind to set a timer (you'll mean to remember but will only when it's worn off and feeling all of sitting/standing/walking), to take it on schedule to stay ahead of pain and swelling, preventing it is easier than trying to control it after the fact especially when traveling. And bring pillows if you can, even a small travel sized thing can be useful to prevent discomfort when in transit.

Good luck!

Check out a store like jo-ann fabrics for half-finger support gloves (used for knitting, crocheting). Three easy options:

http://www.amazon.com/Dritz-82309-Crafters-Comfort-Glove-Medium/dp/B002Y2GY7U/ref=sr_1_3?ie=UTF8&qid=1420679057&sr=8-3&keywords=knitting+gloves#Ask

http://www.overstock.com/Crafts-Sewing/Lion-Brand-Knitting-Stress-Relief-Gloves/3343839/product.html

http://www.amazon.com/Totes-Isotoner-ISOF-LG-Therapeutic-Compression/dp/B000JUFG5K/ref=sr_1_4?ie=UTF8&qid=1420679020&sr=8-4&keywords=knitting+gloves

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.

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.

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.)

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

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.

Just ordered Magic Shave. My ex used to use it for his beard. It is specifically designed for black men's faces to prevent razor bumps and ingrown hairs. Starting with the regular version that stays on for 10 min and supposed to last approx 2 weeks. The stronger version only needs to stay on for 4 min. There is no scraping or scrubbing, just wipe off with a warm cloth. I learned about it from a guy that uses it for his anus, he said it doesn't burn at all. http://www.amazon.com/gp/product/B000142TKO?psc=1&redirect=true&ref_=oh_aui_detailpage_o00_s00

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.

I do the same. My car also has a fairly flat seat and I bought it for this reason. So where the seat meets the back is almost at a 90 degree angle and not 45.
Cars with seats that dip towards the back making my hips lower than my knees hurt my hips.

I also use a wedge cushion similar to this:
https://www.amazon.com/Duro-Med-Coccyx-Cushion-Pillow-Sciatica/dp/B000HLZ8XQ

I find it takes the pressure off my tailbone and helps me sit at the right angle. It also adds a bit of softness.