(Part 3) Best products from r/ehlersdanlos

Hey, I have weak hands as well and am in the process of trying to strengthen them since I use them every day at my job. I have some suggestions to help.

1. Exercise the closing your hand motions. I have a hand squeezer thing that is like this https://www.amazon.com/Fitness-Cathe-Starter-Hand-Grip/dp/B001FB614W If you want to save some money you can also fill a balloon with flour (sounds easier than it is) and use that. Start slow with low reps and work your way up.
   
2. Exercise the opening hand muscles. They have these cool tools that help https://www.amazon.com/Dometool-Stretcher-Resistance-Strength-Exercise/dp/B071XVSTZV/ref=sr_1_7?ie=UTF8&qid=1506143530&sr=8-7&keywords=open+hand+exercise But I think using a rubber band does the same thing for less money. Again, start off slowly and work your way up. Make sure to try and do it every day.
   
3. Exercise your writs. You can get a small weight in your hand (or a can of soup for cheapies) and put your arm straight out. Palm facing down, lift your hand up. Do that a few times then turn your hand around so your palm is facing up and lift your hand up again. Try and stretch your wrists a bit after if you can. I find that I can't get a good stretch since I am too hypermobile, but give it your best shot.
   
4. Something that I just recently discovered was PopSockets. They are an attachment that you put on the back of your phone and it accordions out. I just got one this week and I have not dropped my phone since, which is a big improvement. https://www.popsockets.com/
   
   I wish you luck and hope some of these things help.

For hand pain and fatigue, fountain pens are good too. For most of them their own weight is enough to make them write so you barely have to grip them or press down. And there are a zillion ink colors that are fun to choose from. An inexpensive but good one is the Platinum Preppy...it’s like $4, comes with a large ink cartridge and the cap seals really well so it never dries out (just checked and the Preppy seems to be stupidly overpriced on Amazon right now, it should be cheaper at Jet Pens, Goulet Pens, Vanness, or any other site that has fountain pens). Pilot Metropolitan and Lamy Safari (Safari is pretty much the most counterfeited pen ever and there are a lot of fakes on Amazon so I’d order elsewhere) are pretty good “beginner” fountain pens too, if you want something that looks a little nicer but still isn’t too insanely priced. TWSBI Eco has a good reputation too and holds a TON of ink but it’s easy to put back together incorrectly if you’re the tinkerer type who has to take everything apart. Finer nibs will put down less ink and are less likely to bleed or feather on cheap notebook paper. Nib size isn’t really standardized, though, so there’s a lot of variation between brands.

I try to keep a fountain pen, a rollerball (NOT a ballpoint) and an extra-fine Sharpie in my bag at all times so I can write on just about any surface without killing my hand. Personally, I think ballpoints are the devil and I avoid them whenever possible.

If you need a pencil, fat ones like Pilot Dr Grip are more comfortable for me than skinny ones. I’m accident-prone and always breaking thin lead so I’ve started using sketch pencils with huge 5.6mm lead. I have one of these that I found on a good sale but there are lots of cheaper options. There are some good 2mm or 3mm lead pencils out there too. I got a pack of really generic cheap Chinese 2mm pencils a while back that are surprisingly comfortable to hold for as skinny as they are. They have a lead sharpener built into the back clicky cap thing so you can keep it sharp without having to hunt down any specialty sharpeners.

If I have to use skinny pen/pencil or a ballpoint, I modify my grip to make it less awful. This is how I hold pens that kill my hand if I try to hold them normally. It’s not a perfect solution but it keeps my hand from cramping up and my fingers from bending back as much for a quick note or signature.

This got really long, sorry. I get a little too excited about stationery things...

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'm unsure which type I have, but type 4 is one of the suspects. I don't have adequate healthcare, but I research the ever loving shit out of everything. My mom is also a nurse and I went to school with her while she became one (I was a well behaved kid who was home-schooled at the time). Anyway, I'm good at understanding medical stuff and health stuff.



So much of this is about your diet, and getting the right amounts of key nutrients and vitamins. I had horrible endometriosis like symptoms before going dairy free. My older brother was in a wheelchair before he went gluten free. He has chiari and a whole slew of other stuff, including endometriosis before having his ovaries taken out (he's transgender, if you hadn't).



I'm the youngest, so that could explain a lot of the reasons I'm the healthiest, but I also eat like some kind of freak. Gluten free, diary free, mostly vegan, no corn/canola oil, high omega 3, low omega 6, etc etc. Each of these choices are based on hundreds of hours of research. I also recommend this book (amazon link, but I'm sure you can pirate the pdf) to help understand environment. Look into epigenetics if you want to have a little fun. Make sure to drink a ton of water and many people take salt pills too :D



Just opinions. Good luck. Oh! And deff see if you have a group that meets in your area, I've found that helpful in unexpected ways.

I originally bought this hammock and stand combo. I still use the stand but I tend to rotate between 4-5 different hammocks (including the original).

Right now I'm hanging out in this hammock but I've had various sizes/brands of the nylon ones, rope/woven ones, and cloth ones over the last several years. I like them all.

If you try it out just keep in mind that you may have to play around with it for a while to figure out the best sleeping position as well as the proper sag. As mine start to stretch out over time I notice that I can end up with a bit of pain if I don't make proper adjustments. You don't want it to hang too low or too high but play around with it to see how you like it. I keep mine a bit higher than usual because I also use it just as a regular piece of furniture so I sit in it while I'm at my desk but I don't have any pain/discomfort in its current position when I sleep in it, either, so it works out perfectly.


Edit: My legs and feet also swell up regularly even with compression stockings/garments and so sometimes I'll scoot way down until my legs are propped up pretty high to relieve the swelling and pressure. It works a lot better and faster than propping them up on pillows because there's less pressure from the pillows pressing against the underside of the legs.

I just really love my hammock and how much better I feel overall since incorporating it into my life. I'd suggest EDSers consider trying them out just as an occasional relaxation tool, too, since sleeping in them full time is probably not for everyone.

Luckily my husband is a very supportive partner and knows what my real limits are.

They have systems that go under your mattress and the ends come up and you attach wrist and ankle cuffs to them.

These are nice because you can make them as taught or as loose as you want and it gives you the ability to set your position and then tighten.

You can also move it from "spread eagle" to legs straight down (by moving the straps from the side of the bed to the end).

We also have a [made for sex, soft] rope (for like, tying to a doorknob), a spreader bar (which can be harder on me, but fun on my good days), and a doggy style strap (which actually is useful for me holding on to him in missionary, too).

Of course blindfolds are fun and don't hurt! As well as nice silky scarves. We also have a nice big foam pillow that supports me in some of our stranger positions.

Generally whatever we do is enough to restrain me, but doesn't actually put me in unnatural or uncomfortable positions. It's about respecting your body and boundaries, while still having fun!

I use to have this great older neighbor who had one of the Rollators that I could use sometimes and it was an amazing help. On days when I needed to do chores especially laundry. I’ve never gotten much help from joint braces and the tape stuff I react to because of my MCAS and can’t handle adhesives. Though I know plenty of us do great with both of those things in plenty of ways. It’s definitely a struggle to know when to use aides, which ones, and for how long so they are giving the most benefit without any or much negative impact. The reason most doctors especially those who don’t know hEDS or connective tissue and hypermobility issues say the use of aides and braces can be bad long term is because they are use to looking at things from the perspective of a person with an injury who needs to heal. This isn’t the same at all for us. We are all a bit different which makes it even harder to work out the best ways to proceed but if your knees or hips ache after very little effort then I’d say your aides wouldn’t hurt for certain activities. The last thing you want to do is cause more inflammation, strained muscles, or worse have a full dislocation from pushing yourself during times when you have ways to help yourself get whatever your doing accomplished with aide and avoid it. Your body is good at letting you know what it needs even if it seems crazy or others tell you it’s not necessary especially something like this that you can give a try and if it doesn’t help then no harm done so why would you not at least try it out. Obviously I’m not a doctor so always chat with them if you can or for more specific aides but with the walker you said you were already given one and it’s not a directly worn joint brace or anything that can have negative effects if the wrong one is used or it’s worn incorrectly. I’d suggest the Rollator or one like it that also has a seat. The shape and handles on those seem to work a lot better for us since we have bad joints all over you don’t want to over work the shoulders or wrists either. The seat is also great for doing laundry, dishes if your sink is low enough, lots of other chores, resting when out getting groceries if your not ok using the wheelchairs they offer, plenty more. I’ve been trying to get my own forever since I no longer live near My previous neighbor but I’ve had no income which sucks. Hey aren’t super expensive and some insurances will pay for it if your doctor writes it up for you since they are much better for you than the plain ones they give you. Sorry for the giant run on sentence I’m on mobile and not great and formatting using it but I’ll link to the walker I’m talking about from amazon, there are tons of others I’ll just grab one so you can see the general design I’m referring at least. Good luck and I hope things improve for you even if it’s only in little ways 🤓

Edit: I couldn’t get think to save so here it is. This one has added foam padding to help ease knees issues when standing but there are cheaper more basic ones also this one seemed to fit what might help all what you listed so I thought it’d be the best one to link. 😊

Rollator

I'm at a 38K, which is ... pretty uncomfortable!

Not sure if it would solve your issue, but I've had pretty good luck with Glamorize sports bras ; they're pretty good at shifting the weight from my ribs to my back, which makes it easier to breathe - an extra ten or fifteen pounds right on the lungs can be hard, and stretchy bras and binders compress my ribs in really painful ways. The straps do dig in some, but less than non-sports bras I've had, so your mileage may vary there.

(I guess it's an EDS thing that I used to measure my pulse to make sure I was having a rib subluxation, not a cardiac event. Ow.)

If you want to try longer binders, I would go for GC2B or Shape Shifters - and definitely not Underworks, which has an all-over squeeze I found really rough on my ribs.

Shape Shifters does fairly affordable custom-fit bras and binders, so they might be especially relevant to your interests. My GF has a full-length tank top binder from them, and is quite fond of it.

Some folks also suggest wearing a tanktop under half-binders to prevent slippage and keep everything in place, especially with GC2B's half-binders; that might be worth trying with the one you have, since you have it already.

TL;DR: I MACGYVER MY SHOES

So this might seem counterintuitive but hear me out. I buy xero or merrel or keen in lightweight minimalist style 1/2 to one size too big, and then I build up the soles.

I have a slight leg length discrepancy (left leg shorter in femur) and this is what got me started thinking this way.

For the lefts I use a 1.5 cm solid heel lift and glue it down to actual base of shoe after removing insole. I then cut various liner materials to fit using insole as pattern. I have so far macgyvered 5+ pairs permanently as follows:

1. Camper beach sandals: rope sole and leather straps.
   These I loosened/detached the toe strap and resewed them about 2 cm tighter for both feet. (Because shoes larger size/ toe strap not adjustable.) Sewed a deerhide backing onto underside of both toe straps. Created a wool felt heel lift and attached this and covered with deer hide at heel. Sounds clunky but my heels are hidden behind leather pieces that have ankle straps at the top. This was first DIY shoe remodel and was very fun but time consuming (hand stitching through leather, hello carpal tunnel mega spaz).
   
   
2. Merrel boots ( Merrell Women's Encore Kassie MID Waterproof Fashion Boot, tan, 9.5 M US https://www.amazon.com/dp/B078NKP121/ref=cm_sw_r_cp_apa_i_nOR4CbGEM6J9S)
   
   Bought 1/2 size larger (7). I just glued in a 1.5 cm flexible heel lift on left and added one layer of boot liner cut to fit under both insoles. These my fave so comfy boots. Can walk in or stand. They dont yank ankles, feet fit snug with thicker wool socks or cool and loose in thin ankle socks.
   
   
3. Various sneakers: have built up left sole with various materials and shoegoo/ gorilla glue: old yoga mats, mouse pads, silicone hot pads (kitchen), cardboard of various weights, thick wool felt and once, spare sorel winter boot paks which are like 3 cm thick springy wool felt.
   
   
4. Bogs rubber mud boots. I live in AK and mud on all the things always (or snow, ice, sand, etc). These are HEAVY but somehow the design plus wool socks keeps the weight suspended from my calves rather than the ankles. I like the added sturdiness here for tromping about in forest or on beach. These have left side lift glued to bottom of insole and a gel liner on top, both sides. Makes them snug and hard to get off but super safe feeling on my feet.
   
   
5. Poor quality or dress shoes: I am 5'2" 140 lbs 45yo woman. Have ruined my poor feet which are ultra flexy. I finally got rid of all heels, pointy toes, hard soles, and any pair that "make things worse" or that I'm just not comfortable in. This endedup being all my dress shoes. I now buy ballet flats similar to tieks style, wide toe box, flexible and bouncy/grippy sole types. Then as above I create better conditions for my own comfort.
   Faves now are xero wool grey lace ups, (Xero Shoes Pacifica - Women's Minimalist Wool Shoe - Barefoot Inspired, Zero Drop Sole - Charcoal https://www.amazon.com/dp/B07H2PJZXG/ref=cm_sw_r_cp_apa_i_I8R4Cb79KD40G) they go with my super minimalist Alaska mom wardrobe and can wear with black tights for dressy events.
   I also have a silver pair of leather ballet flats I slip a heel lift in with double sided tape ( I wear 2x/year lol)

Boy do I have good news for you. I just went through all of this and got myself set up.

First off, try a trackball mouse. It keeps you from having to move your shoulder so you don’t crack or dislocate it while playing. Personally, I use my thumb and index finger on the ball because it eliminates most of the problems with shaking fingers moving the pointer. This is the mouse I use. It is nice because above the ball there is a DPI switch you to change the sensitivity (is moving the ball one inch moves the cursor three inches or one half inch) which is nice for shaky hands that need to hit something precise. This model is much cheaper, and I used one forever before I bought this new one.

Then I bought a separate keypad for assigning spells/attacks. It is curved and keeps your left hand at a more natural angle, and for me dramatically reduced the number of duplicate and unintended key presses. I map arrow keys to my thumb, jump under my thumb, tab above my thumb, and shift to the bottom left corner. Unless you talk a lot in chat, you’ll never need to take your hand off of it. It also has multiple “layers” through the software, so, for me, my #1 layer is modifier keys and Numbers 1-0. My #2 layer is chat emotes and system keys (escape, etc.). If you play retail, you can also bind system macros to it, that go beyond what wow normally allows (tab target tab target tab target... for hunting rares). This is the new model of what I use. There is an older version as well, but for the meager price difference you’re better with the new one.

I know that’s a lot of money to invest for WoW, but it’s really more “general computer use”. I have all my major macros (cut and paste, etc) assigned to a third layer on that keypad, and the trackball mouse is what allows me to use the computer at all.

Good luck, and I hope you find a way to enjoy it!

Hi! I'm a 26-year-old professional woman with kEDS who lives alone, I can think of a few things that might help.

As far as cleaning goes, a roomba is worth its weight in gold. Expensive, yes, but unlike a housekeeper it's a one-time expense. I have mine set to come on every morning so I wake up to a clean apartment. Hoovering used to take me two hours (I swear wheelchair vacuuming should be a paralympic sport) and leave me with no energy, so getting a roomba (which I've now had for two years) has helped enormously to free up my time and energy.

For ironing, try using a handheld steamer instead of an iron and ironing board.

For cleaning hard-to-reach surfaces, I use this: https://www.amazon.co.uk/gp/product/B00X9YNQ4Q/ref=oh_aui_search_detailpage?ie=UTF8&psc=1 - stretching to clean walls, windows, tall furniture etc can really mess with your joints.

If a lot of your pain is from walking and standing, consider getting a wheelchair. I didn't start to use a chair until I couldn't walk at all anymore, but I wish I'd started using one earlier, because my pain levels went down so much once I wasn't struggling around on crutches anymore. Even for household tasks like cooking (and, if stairs weren't involved, laundry) it could make a huge difference for you. And, uh, maybe consider moving to a building with a lift if possible! The stairs must be really taking it out of you.

Hope that helps somewhat - best of luck. :)

Hey! I know the feeling, I dealt with pretty much the exact same thing freshman year of college. I was in the process of getting diagnosed at the time, and so had the opportunity to discuss this with the OT person I was sent to for a session after diagnosis. She suggested two things: first, using gel pens instead of ball point pens, as they create less resistance, so your hands won't have to work as hard; second, she suggested using this insulation as a grip on the pens (cut to size for the pens). It is far bigger/squishier than anything designed to be a pen grip. It takes a bit of getting used to, but it does help. Since then, I have found that these pens are amazing. Again, it takes some getting used to, and changing the way you write, but it's worth it. I have also found a method of KT taping my hands that is really helpful for support on especially bad days. If you are interested, let me know and I can ask my (much more tech-savvy partner) to help me send/link photos via reddit. I absolutely second everything everyone else has said here about getting official accommodations, and then using a laptop to take notes, or have notes taken by another member of the class. I had official accommodations in college for this reason, as well, and they were a life-saver. I generally worked out with the instructor whether I was going to use my laptop, have notes taken for me, or both, and how tests would work. Hopefully my suggestions above will help until you can go through the formal process, and for situations where writing is a must.

I have similar issues, though I have the most trouble using a mouse. Since you work from home, and your biggest issue is typing, you may want to try speech recognition software. It took me a few days to get used to it, but I now find it really helpful in certain situations.

Since you specifically mentioned scrolling, I'll mention that you can say commands like "press page down" to scroll down like you pressed the page down key, or "scroll down 3" to scroll down like you hit the scroll button 3 times.

I've had mixed success with using the speech recognition to totally replace typing, but I'm using the free Microsoft Speech Recognition software, and I've heard some of the other software out there is much better.

Since my biggest issue is with a mouse, I'm hoping improvements in eye tracking hardware, [like this] (https://www.amazon.com/gp/product/B01MAWPMXQ/ref=ask_ql_qh_dp_hza), will let me stop using a mouse altogether in the next few years.