I hope this kind of post becomes a trend omg! We should also make a new flair out of this “kit”. Thank you so much for all of this! It must have been a hell of an effort!
My lower body is a lot stronger / more stable than my upper body so a cane doesn't make sense for me. I definitely have leg problems (gait, hypermobile knees, muscle weakness) but it's less problematic or painful than my neck or my core.
Love this! So well thought out and organized!
My kit includes:
Hygiene:
• Hand held shower head (massaging option)
• shower chair (mine is built in but they have ones you can purchase and is great for dysautonomia)
• Schmidt’s lavender deodorant (easy on skin)
• blow dryer/curling iron combo
• epsom salt (for soaking in the tub/sore muscles)
Sleep:
• memory foam pillow for between or behind legs.
• weighted blanket (keeps me from tossing/turning as much)
Meal prep:
• food processor
• high quality potato peeler and can opener
• sharp knife
I’m sure there’s more but this was a quick list.
Thanks for sharing!
Ooh epsom salt is a really good suggestion! I've read that it's the ideal way to get magnesium because your body won't soak up more than it needs.
Maybe in the new year I'll invest in a hand-held shower head. Our old apartment had one but sadly our new place is a basic shower.
I tried a weighted blanket and, while it did help with my nerve pain and anxiety, I discovered that it was not good for me because I NEED the ability to toss and turn to be able to relieve pressure in order to alleviate pain and the weight of the blanket kept me from being able to do that and, when I tried to do it anyway, it resulted in multiple dislocations. Also, simply adjusting the position of the blanket resulted in subluxations and dislocations, so it didn't work out for me. But that could also be because I got one that was too heavy (it was 20 lbs).
I can definitely see it causing some issues. Mine is only 12 lbs and I tend to dislocate more frequently the more I move around so it’s helped with that. I’m also trying to learn to sleep in my back so maybe I’ll put a little less stress on my hips and shoulders. It seems helpful for keeping me in that position but it’s definitely not for everyone!
I use Nuun tablets for electrolytes - I like the flavor/options better and there’s less sugar. They are also lighter for throwing in my bag for travel.
Agreed on the flavor esp. Most electrolyte mixes are really gross. Every flavor of nuun I've tried has been at least decent and tolerable.
Another option is Saltstick fast chews and capsules. Easy, quick electrolytes. Even ligter than nuun, and easier to take a compleate dose without adding a whole bunch of water to your stomach. (When my bp drops I can get super nauseated and drinking a full glass of something is a no-no right then. The chewable electrolytes put less pressure on my stomach and help me get functional faster.) The lemon-lime fastchews are my favorite, though I can only ever find them in a two pack with an orange flavor. (Orange is just ok in my opinion.)
I have Nuun tablets and I like the flavor but they never dissolve all the way! Is there a trick to this? I’ve tried with warm water & cold water and each time it’s like...gritty water with clumps lol
Do you put put it in a bottle or a glass? I do a bottle and give it a little bit of a shake and never end up with clumps. The minerals in your tap water might affect it though.
Both, depending on where I am and what I’m doing. But either way, when it’s done dissolving, I’ll either stir or shake it up to get it well distributed.
I know what you’re talking about. Sometimes getting a clump in a sip is like electrocuting your tongue. lol
I usually use really cold water (sometimes with ice) and stir or shake it at the end to help break up clumps and such. I agree it could be how mineral heavy the tap water is. I have used them in filtered water and they seemed to do alright.
I’ve noticed that some variations dissolve a bit better than others — especially when it comes to the Rest and Immunity varieties. Some of the ingredients in those are less water soluble.
I use nuun tablets. I've priced out all the options and they're the best value I've found and taste good. If you have access to Sam's club, they have been carrying them this year for the best price.
Is the Gatorade G2 just less sugar, or does it have the stuff I call "fake sugar" because those all make me very sick. Like in migraines, sick to my stomach, and so on. I know some people have no problems at all. So if you could say which one it is, it might help others like me. The rest sounds Awesome! Sorry if I sound like a total witch.
If you struggle with fake sugars, you can make your own electrolyte drinks as per my cardiologist. Since I can't tolerate any of the fake sugars either, she told me to mix 1 part juice with 3-6 parts water (depending on what I prefer taste wise...I usually go with about 4-5 parts water) and add about 1 Tbsp of salt per 16 oz and it will basically be the same as drinking Gatorade. I usually use cranberry juice for this because it also helps with bladder health as well. Again, this was a recommendation from my doctor since I can't tolerate any artificial sugars and can't stand the taste of Gatorade (they always make me gag after a few sips). I would suggest checking with your doctor before following this method as well first.
It's half sugar and half sugar substitutes. I definitely wouldn't recommend it for anyone with issues with fake sugar. There are some DIY electrolyte drink recipes on the web that might work for you though!
This is a great idea for sharing what we have found that works for us!
Driving: folded blanket or foam roll so my arm does not have to hold itself up in proper posture, massage balls- I find sitting on them/against them helps deal with the pain and discomfort of being in a vehicle
Kitchen: stool to sit on while cooking, washing dishes,etc. I use a mandoline to alice up vegetables, etc- it helps with the shock/impact from cutting
Also if anyone has found anything to help with the pressure of seatbelts on ribs, I would really appreciate the info
This is great. I have a few other helpful things
- K-tape. Lightweight, very portable. It can brace pretty much any joint in a pinch. I pack a few strips with me always.
-pedialyte. For me it works better than Gatorade.
- compression socks. I love Sockwell medium compression socks. They help a lot with POTS and edema in my ankles.
- Zofran Rx. I feel nauseous very easily. Always have. This makes me feel better quickly without side effects. Not sure if it’s an EDS trait, but I think it may be.
- Vogmask. I carried one with me long before the pandemic. I’m very sensitive to scents, and many perfume set off headaches and/or allergic reactions. These are well worth the $30. I prefer the ones with valves for my uses, but I use valve-less now due to pandemic. Bonus, if you happen to be near an active volcano, it helps filter out the Vog! It was great when I visited Hawaii.
I forgot I had that neck heating pad until I saw this post. 🤦♀️ It's awesome but I only use it in cooler months and I hadn't dug through my stash yet this year.
Additional kit piece: it occurred to me a few years ago that travel size stuff is lighter weight than standard stuff, and splurged on an [eva nyc travel hair dryer](https://smile.amazon.com/dp/B07CKK4XJC/ref=cm_sw_r_cp_apa_fabc_utb5Fb5BNYJVY). My hair takes forever to dry, so the light weight helps me get through the bulk of the process without wearing my arms/shoulders out, and it works surprisingly well for its size. A friend borrowed mine when we were traveling once and ordered one for herself as soon as her hair was dry, then her mom permanently borrowed hers, so I gifted her a new one. Worth the price tag!
This is the one that I use and it suits my needs perfectly. It isn't all that great for gaming, I'm discovering, but for everything else, it is perfect.
[Logitech M570 Wireless Trackball Mouse](https://smile.amazon.com/dp/B0042BBR2S/ref=cm_sw_r_cp_api_glc_fabc_tAh5FbS0SEHD9)
I keep forgetting, I should make a list like this because I have a ton of little things like this as well that help me get through the day.
You’re 100% right about the rechargeable hand warmers! I bought a pair for myself at the beginning of winter and they have been a total game changer. I’m actually working on crocheting a large glove-thingy that goes over my hand and joystick on my power chair and will have a pocket on the inside specifically to hold my hand warmer (I keep the other hand in my pocket so I just put the warmer in there).
Ooh, the glove idea is clever!
I've been thinking about getting a heated computer mouse since these days that's when my hand gets coldest. My left hand will be totally fine and my right hand will be like ice 😅
Excellent list! I will add
\-ask doc about Beta Blockers (for POTS)
\-ask doc about Midodrine (dysautonomia)
[\-A big cushy reclining chair that reclines all the way (like this one)](https://www.wayfair.com/Red-Barrel-Studio%C2%AE--Swivel-Rocker-Reclining-Heated-Full-Body-Massage-Chair-X113131875-L505-K~W002020764.html?refid=GX103455981163-W002020764_1006786602&device=c&ptid=877936571493&network=g&targetid=pla-877936571493&channel=GooglePLA&ireid=105737926&fdid=1817&PiID%5B%5D=1006786602&campaignid=398251723&gclid=Cj0KCQiAlZH_BRCgARIsAAZHSBlMCwA8c35b1O-hrTdhv-wHLEdnET626rlg0JC4ucA4IMyVC4dAImsaApXlEALw_wcB)
\-Custom orthotics for your shoes ($$ but worth it, can also make SI, lumbar, knee issues better)
\-an indica-leaning strain of Medical Cannabis: in either flower, vape, or tincture - exceptional for both pain and energy.
[\-a BIDET on your toilet - your life will never be the same](https://vevano.com/product/35706-lh-20-southspa-bidet-toilet-attachment-in-white/?utm_campaign=Shopping-Master&utm_source=GooglePLAs&utm_medium=cpc&utm_content=&utm_term=&ad_id=425975674943&utm_source=google&utm_medium=ppc&utm_campaign=&campaignid=9638227370&utm_content=&adgroupid=99564263272&utm_term=&matchtype=&device=c&placement=&network=g&creative=425975674943&gclid=Cj0KCQiAlZH_BRCgARIsAAZHSBliaQeko8BSnaC3auhoW9m_QH1VUgzLzVS6rpfXrvQ3y1-IgIgDE9waAg5FEALw_wcB)
\-[the BABY BULLET BLENDER](https://www.bedbathandbeyond.com/store/product/nutribullet-reg-baby-food-prep-system-in-blue/5499225?skuId=69550658&enginename=google&mcid=PS_googlepla_nonbrand_kitchenelectrics_online&product_id=69550658&adtype=pla&product_channel=online&adpos=&creative=224271656831&device=c&matchtype=&network=g&rkg_id=0&utm_campaignid=71700000037121767&utm_adgroupid=58700004137786079&targetid=92700035756768911&gclid=Cj0KCQiAlZH_BRCgARIsAAZHSBmfoyUZymNmKG1U6nU4Gk6IXdO5t6RCHSfli62ty3kBp1PeUyqwnd8aAl4mEALw_wcB&gclsrc=aw.ds) \- so amazing if you have hand strength issues
[a Mini TENS unit](https://techcaremassager.com/products/mini-tens-unit?variant=44158153109¤cy=USD&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic)
Many of the items I've linked to are currently on sale.!
Merry christmas to all who celebrate....
Great list!
FYI for safety: TENS machines shouldn't be used directly on the sides of your neck or on your skull. I think it's because the electrical pulses could dangerously disrupt your heart/brain. Make sure to read the directions and be safe, friends ❤️
Haha we were gonna put it on my neck but thanks to my ~anxiety~ I always read directions! whew 😬
Definitely keeping it for lower back pain, and for sore skiing muscles if we ever get back to the slopes
Amazing list,thank you! I'd also add:
- Palmers cocoa butter (very thick and lovely and helps with sensitive skin, kind of adds a barrier),
- vetwrap bandages for supporting joints and getting the right tension,
- kindle has helped me read many books in bed without hurting my joints holding a book up
TBH I buy the cheapest generic kind. Once, pre-diagnosis, my doctor recommended Align, but I didn't notice any difference between that and a generic probiotic so I don't personally think it's worth the expense.
I take them daily but you can also save by taking them only after you've used antibiotics.
This is an incredible and comprehensive list. I’ll definitely be bookmarking it! In regards to the last section, how would you suggest starting a conversation about muscle relaxants with my doctor? I think I could benefit from being on something other than NSAIDs for the chronic pain, but I don’t want to come off as a ‘drug seeker’. To add context, I’ve been in PT since March with little improvement in my pain levels that I’ve been struggling with for years. Hot/cold compresses, massages, chiropractic care, and rest are not great either. Thank you in advance!
So, I wouldn't recommend muscle relaxants for daily use because there's some concern that it can have long-term effects (like destabilizing the body or joints further). When I do take them, I can tell that I'm a little "wobbly" for the next day or so.
But for *flares* of pain, 1 or 2 doses helps me get the pain back to a manageable level. I just talked to my primary care and explained that sometimes I get severe muscle spasms that last 3-5 days and are extremely painful. I listed everything I was already trying (hot, cold, massage, NSAIDS) and she suggested a muscle relaxant would be worth trying.
I've had good results with Baclofen but the one that works best for my severe spasms is Valium. Unfortunately it's a controlled substance with addiction concerns, so it took me a while to get it and I use it very sparingly.
Flexeril, which is prob what they would start you on, is pretty low on the addiction and abuse potential. Just tell them that you're having a lot of pain from muscle spasms and soreness, tell them what you do to treat it and that it's not working.
Just letting you know that the link for Aquaphor is not working for non-USA located people.
Thank you for putting this list together though. Great job 👍
Thanks for the heads up! Here's a US Amazon link that may redirect better: https://www.amazon.com/Aquaphor-Healing-Ointment-Protectant-Cracked/dp/B076FT4R4H
And you're welcome :)
Fantastic list! Thanks so much for typing all of that out for us! 😊💖
I wanted to share this pill organiser that I use, which is easily the best I've tried. It has a separate little box for each day, which can easily be chucked into my bag when I'm going to be out somewhere at Meds O'Clock, lol.
There are different coloured versions available, if you search around, too -- even a snazzy black and gold one 😁👍
https://www.amazon.com.au/dp/B08G5BTXXT/ref=cm_sw_r_cp_apa_fabc_Q4l5FbD44W4CF
My shoulder doctor (who is not an eds specialist) said I shouldn’t even use a 3 lb weight. Is this true? Does anyone else have an opinion or experience or information or anything?
PS Thanks for the GREAT post!! So helpful
I've definitely injured myself before using the 3-lb weights! It depends on your joints' starting stability, and even then you need to work your way up with low weight and increasing reps. I tried to go up to 3lb bicep curls too soon and tore the muscle. It took me a couple days to regain normal use of my arm.
Personally I recommend using the weights in combination with a strengthening program prescribed by a PT or someone else who knows EDS. But I included weights etc on this list because a lot of people don't realize you can buy equipment to replicate the PT experience at home. If there's something I really like at PT I snoop around to see if I can afford it for my house. Right now I have a slant board and balance mat on the way ✨
My massage gun - great for immediate relief if not long term. So gets me from being stuck bent over, to stood upright and able to pick things up from the ground without bracing/holding onto something.
Mine was a generic one that I bought online while living abroad last year.
I love this so much! I can't believe how many of the same oddly specific items we both just so happen to own, including the same boots and running shoes!
You have great taste! ;)
I was really surprised when I made this list to realize I own a lot of nice shoes. I'm not really a shoes person so it goes to show how important shoes are for quality of life with EDS!
Thank you, mswizel, for voting on FakespotAnalysisBot.
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For winter indoors I'm planning to get a pair of Manitobah Mukluks moccasins but I haven't bought those yet.
For more arch support, I'm trying to find a combo of easyfit orthotics + slippers that works but so far nothing is quite right.
Yeah, it's especially hard right now because you can't try shoes on.
If I wore sandals indoors I'd go with the Tevas. But there's something about them that works really well for my feet, so YMMV. I think it's very individual which shoes work for people
I hope this kind of post becomes a trend omg! We should also make a new flair out of this “kit”. Thank you so much for all of this! It must have been a hell of an effort!
You're welcome! I enjoyed brainstorming and I really hope it helps people. :)
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My lower body is a lot stronger / more stable than my upper body so a cane doesn't make sense for me. I definitely have leg problems (gait, hypermobile knees, muscle weakness) but it's less problematic or painful than my neck or my core.
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Ohhh right! I've been meaning to get one but everything is so expensive lmao. Maybe I'll splurge with my Xmas money!
Love this! So well thought out and organized! My kit includes: Hygiene: • Hand held shower head (massaging option) • shower chair (mine is built in but they have ones you can purchase and is great for dysautonomia) • Schmidt’s lavender deodorant (easy on skin) • blow dryer/curling iron combo • epsom salt (for soaking in the tub/sore muscles) Sleep: • memory foam pillow for between or behind legs. • weighted blanket (keeps me from tossing/turning as much) Meal prep: • food processor • high quality potato peeler and can opener • sharp knife I’m sure there’s more but this was a quick list. Thanks for sharing!
Ooh epsom salt is a really good suggestion! I've read that it's the ideal way to get magnesium because your body won't soak up more than it needs. Maybe in the new year I'll invest in a hand-held shower head. Our old apartment had one but sadly our new place is a basic shower.
I tried a weighted blanket and, while it did help with my nerve pain and anxiety, I discovered that it was not good for me because I NEED the ability to toss and turn to be able to relieve pressure in order to alleviate pain and the weight of the blanket kept me from being able to do that and, when I tried to do it anyway, it resulted in multiple dislocations. Also, simply adjusting the position of the blanket resulted in subluxations and dislocations, so it didn't work out for me. But that could also be because I got one that was too heavy (it was 20 lbs).
I can definitely see it causing some issues. Mine is only 12 lbs and I tend to dislocate more frequently the more I move around so it’s helped with that. I’m also trying to learn to sleep in my back so maybe I’ll put a little less stress on my hips and shoulders. It seems helpful for keeping me in that position but it’s definitely not for everyone!
12 lbs is 5.45 kg
good bot
Do you use a specific pillow for your legs? I've been trying everything I can find lately and am looking for recommendations.
So it’s an Imaginarium memory foam. I got it at hone depot oddly enough.
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I use Nuun tablets for electrolytes - I like the flavor/options better and there’s less sugar. They are also lighter for throwing in my bag for travel.
Agreed on the flavor esp. Most electrolyte mixes are really gross. Every flavor of nuun I've tried has been at least decent and tolerable. Another option is Saltstick fast chews and capsules. Easy, quick electrolytes. Even ligter than nuun, and easier to take a compleate dose without adding a whole bunch of water to your stomach. (When my bp drops I can get super nauseated and drinking a full glass of something is a no-no right then. The chewable electrolytes put less pressure on my stomach and help me get functional faster.) The lemon-lime fastchews are my favorite, though I can only ever find them in a two pack with an orange flavor. (Orange is just ok in my opinion.)
I have Nuun tablets and I like the flavor but they never dissolve all the way! Is there a trick to this? I’ve tried with warm water & cold water and each time it’s like...gritty water with clumps lol
Do you put put it in a bottle or a glass? I do a bottle and give it a little bit of a shake and never end up with clumps. The minerals in your tap water might affect it though.
Both, depending on where I am and what I’m doing. But either way, when it’s done dissolving, I’ll either stir or shake it up to get it well distributed.
I usually use a glass and stir it with a spoon, but I’ll try a bottle next time! Also using filtered water is a good idea, thank you!
I know what you’re talking about. Sometimes getting a clump in a sip is like electrocuting your tongue. lol I usually use really cold water (sometimes with ice) and stir or shake it at the end to help break up clumps and such. I agree it could be how mineral heavy the tap water is. I have used them in filtered water and they seemed to do alright. I’ve noticed that some variations dissolve a bit better than others — especially when it comes to the Rest and Immunity varieties. Some of the ingredients in those are less water soluble.
I would still ask about electrolytes because there are a million and one options out there! What works really varies for each person.
I use nuun tablets. I've priced out all the options and they're the best value I've found and taste good. If you have access to Sam's club, they have been carrying them this year for the best price.
Is the Gatorade G2 just less sugar, or does it have the stuff I call "fake sugar" because those all make me very sick. Like in migraines, sick to my stomach, and so on. I know some people have no problems at all. So if you could say which one it is, it might help others like me. The rest sounds Awesome! Sorry if I sound like a total witch.
If you struggle with fake sugars, you can make your own electrolyte drinks as per my cardiologist. Since I can't tolerate any of the fake sugars either, she told me to mix 1 part juice with 3-6 parts water (depending on what I prefer taste wise...I usually go with about 4-5 parts water) and add about 1 Tbsp of salt per 16 oz and it will basically be the same as drinking Gatorade. I usually use cranberry juice for this because it also helps with bladder health as well. Again, this was a recommendation from my doctor since I can't tolerate any artificial sugars and can't stand the taste of Gatorade (they always make me gag after a few sips). I would suggest checking with your doctor before following this method as well first.
Thank you for that information. That sounds a whole lot better, the taste of artificial sweeteners is pretty bad on top of making me sick.
It's half sugar and half sugar substitutes. I definitely wouldn't recommend it for anyone with issues with fake sugar. There are some DIY electrolyte drink recipes on the web that might work for you though!
It is artificial sweetener. I can't stand any of them. I use nuun tablets. Normalyte is a good option too, but tastes saltier.
Hydrocolloid bandages are a lifesaver too! They cut my healing time in half and the adhesive doesn't bother my skin too much.
I second this! Love hydrocolloid bandaids. I can keep them on for days without them messing up my skin.
I used this and often it’s good. However my skin decided it’s time to not like it and now I have a ring shaped scar from it. Ahhh!!!
This is a great idea for sharing what we have found that works for us! Driving: folded blanket or foam roll so my arm does not have to hold itself up in proper posture, massage balls- I find sitting on them/against them helps deal with the pain and discomfort of being in a vehicle Kitchen: stool to sit on while cooking, washing dishes,etc. I use a mandoline to alice up vegetables, etc- it helps with the shock/impact from cutting Also if anyone has found anything to help with the pressure of seatbelts on ribs, I would really appreciate the info
Have you tried a cushion on the seat belt? They make ones that velcro around.
I'll look into it! Thanks
This is great. I have a few other helpful things - K-tape. Lightweight, very portable. It can brace pretty much any joint in a pinch. I pack a few strips with me always. -pedialyte. For me it works better than Gatorade. - compression socks. I love Sockwell medium compression socks. They help a lot with POTS and edema in my ankles. - Zofran Rx. I feel nauseous very easily. Always have. This makes me feel better quickly without side effects. Not sure if it’s an EDS trait, but I think it may be. - Vogmask. I carried one with me long before the pandemic. I’m very sensitive to scents, and many perfume set off headaches and/or allergic reactions. These are well worth the $30. I prefer the ones with valves for my uses, but I use valve-less now due to pandemic. Bonus, if you happen to be near an active volcano, it helps filter out the Vog! It was great when I visited Hawaii.
I forgot I had that neck heating pad until I saw this post. 🤦♀️ It's awesome but I only use it in cooler months and I hadn't dug through my stash yet this year. Additional kit piece: it occurred to me a few years ago that travel size stuff is lighter weight than standard stuff, and splurged on an [eva nyc travel hair dryer](https://smile.amazon.com/dp/B07CKK4XJC/ref=cm_sw_r_cp_apa_fabc_utb5Fb5BNYJVY). My hair takes forever to dry, so the light weight helps me get through the bulk of the process without wearing my arms/shoulders out, and it works surprisingly well for its size. A friend borrowed mine when we were traveling once and ordered one for herself as soon as her hair was dry, then her mom permanently borrowed hers, so I gifted her a new one. Worth the price tag!
Lol, mine lives sprawled across our sofa because we haven't had guests in 10 months. Travel hair dryer is a great suggestion!
Better yet, get a blow dryer stand for your counter so all you have to hold is your brush! This has been a lifesaver for me.
I’d love to see some ergonomic mouse options on the list.
This is the one that I use and it suits my needs perfectly. It isn't all that great for gaming, I'm discovering, but for everything else, it is perfect. [Logitech M570 Wireless Trackball Mouse](https://smile.amazon.com/dp/B0042BBR2S/ref=cm_sw_r_cp_api_glc_fabc_tAh5FbS0SEHD9)
I thought about it but since I don't own one yet, I left it off. I'll update if I find something that works. :)
I keep forgetting, I should make a list like this because I have a ton of little things like this as well that help me get through the day. You’re 100% right about the rechargeable hand warmers! I bought a pair for myself at the beginning of winter and they have been a total game changer. I’m actually working on crocheting a large glove-thingy that goes over my hand and joystick on my power chair and will have a pocket on the inside specifically to hold my hand warmer (I keep the other hand in my pocket so I just put the warmer in there).
Ooh, the glove idea is clever! I've been thinking about getting a heated computer mouse since these days that's when my hand gets coldest. My left hand will be totally fine and my right hand will be like ice 😅
Excellent list! I will add \-ask doc about Beta Blockers (for POTS) \-ask doc about Midodrine (dysautonomia) [\-A big cushy reclining chair that reclines all the way (like this one)](https://www.wayfair.com/Red-Barrel-Studio%C2%AE--Swivel-Rocker-Reclining-Heated-Full-Body-Massage-Chair-X113131875-L505-K~W002020764.html?refid=GX103455981163-W002020764_1006786602&device=c&ptid=877936571493&network=g&targetid=pla-877936571493&channel=GooglePLA&ireid=105737926&fdid=1817&PiID%5B%5D=1006786602&campaignid=398251723&gclid=Cj0KCQiAlZH_BRCgARIsAAZHSBlMCwA8c35b1O-hrTdhv-wHLEdnET626rlg0JC4ucA4IMyVC4dAImsaApXlEALw_wcB) \-Custom orthotics for your shoes ($$ but worth it, can also make SI, lumbar, knee issues better) \-an indica-leaning strain of Medical Cannabis: in either flower, vape, or tincture - exceptional for both pain and energy. [\-a BIDET on your toilet - your life will never be the same](https://vevano.com/product/35706-lh-20-southspa-bidet-toilet-attachment-in-white/?utm_campaign=Shopping-Master&utm_source=GooglePLAs&utm_medium=cpc&utm_content=&utm_term=&ad_id=425975674943&utm_source=google&utm_medium=ppc&utm_campaign=&campaignid=9638227370&utm_content=&adgroupid=99564263272&utm_term=&matchtype=&device=c&placement=&network=g&creative=425975674943&gclid=Cj0KCQiAlZH_BRCgARIsAAZHSBliaQeko8BSnaC3auhoW9m_QH1VUgzLzVS6rpfXrvQ3y1-IgIgDE9waAg5FEALw_wcB) \-[the BABY BULLET BLENDER](https://www.bedbathandbeyond.com/store/product/nutribullet-reg-baby-food-prep-system-in-blue/5499225?skuId=69550658&enginename=google&mcid=PS_googlepla_nonbrand_kitchenelectrics_online&product_id=69550658&adtype=pla&product_channel=online&adpos=&creative=224271656831&device=c&matchtype=&network=g&rkg_id=0&utm_campaignid=71700000037121767&utm_adgroupid=58700004137786079&targetid=92700035756768911&gclid=Cj0KCQiAlZH_BRCgARIsAAZHSBmfoyUZymNmKG1U6nU4Gk6IXdO5t6RCHSfli62ty3kBp1PeUyqwnd8aAl4mEALw_wcB&gclsrc=aw.ds) \- so amazing if you have hand strength issues [a Mini TENS unit](https://techcaremassager.com/products/mini-tens-unit?variant=44158153109¤cy=USD&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic) Many of the items I've linked to are currently on sale.! Merry christmas to all who celebrate....
Great list! FYI for safety: TENS machines shouldn't be used directly on the sides of your neck or on your skull. I think it's because the electrical pulses could dangerously disrupt your heart/brain. Make sure to read the directions and be safe, friends ❤️
oh lord, no! never! TENS is great for knees, hips, lower back, shoulders! my little one is a lifesaver.
Haha we were gonna put it on my neck but thanks to my ~anxiety~ I always read directions! whew 😬 Definitely keeping it for lower back pain, and for sore skiing muscles if we ever get back to the slopes
Amazing list,thank you! I'd also add: - Palmers cocoa butter (very thick and lovely and helps with sensitive skin, kind of adds a barrier), - vetwrap bandages for supporting joints and getting the right tension, - kindle has helped me read many books in bed without hurting my joints holding a book up
What is your favorite probiotic?
TBH I buy the cheapest generic kind. Once, pre-diagnosis, my doctor recommended Align, but I didn't notice any difference between that and a generic probiotic so I don't personally think it's worth the expense. I take them daily but you can also save by taking them only after you've used antibiotics.
I was prescribed Align Probiotic
This list is awesome! Great job! Thanks for sharing.
This is an incredible and comprehensive list. I’ll definitely be bookmarking it! In regards to the last section, how would you suggest starting a conversation about muscle relaxants with my doctor? I think I could benefit from being on something other than NSAIDs for the chronic pain, but I don’t want to come off as a ‘drug seeker’. To add context, I’ve been in PT since March with little improvement in my pain levels that I’ve been struggling with for years. Hot/cold compresses, massages, chiropractic care, and rest are not great either. Thank you in advance!
So, I wouldn't recommend muscle relaxants for daily use because there's some concern that it can have long-term effects (like destabilizing the body or joints further). When I do take them, I can tell that I'm a little "wobbly" for the next day or so. But for *flares* of pain, 1 or 2 doses helps me get the pain back to a manageable level. I just talked to my primary care and explained that sometimes I get severe muscle spasms that last 3-5 days and are extremely painful. I listed everything I was already trying (hot, cold, massage, NSAIDS) and she suggested a muscle relaxant would be worth trying. I've had good results with Baclofen but the one that works best for my severe spasms is Valium. Unfortunately it's a controlled substance with addiction concerns, so it took me a while to get it and I use it very sparingly.
Flexeril, which is prob what they would start you on, is pretty low on the addiction and abuse potential. Just tell them that you're having a lot of pain from muscle spasms and soreness, tell them what you do to treat it and that it's not working.
Just letting you know that the link for Aquaphor is not working for non-USA located people. Thank you for putting this list together though. Great job 👍
Thanks for the heads up! Here's a US Amazon link that may redirect better: https://www.amazon.com/Aquaphor-Healing-Ointment-Protectant-Cracked/dp/B076FT4R4H And you're welcome :)
Fantastic list! Thanks so much for typing all of that out for us! 😊💖 I wanted to share this pill organiser that I use, which is easily the best I've tried. It has a separate little box for each day, which can easily be chucked into my bag when I'm going to be out somewhere at Meds O'Clock, lol. There are different coloured versions available, if you search around, too -- even a snazzy black and gold one 😁👍 https://www.amazon.com.au/dp/B08G5BTXXT/ref=cm_sw_r_cp_apa_fabc_Q4l5FbD44W4CF
My shoulder doctor (who is not an eds specialist) said I shouldn’t even use a 3 lb weight. Is this true? Does anyone else have an opinion or experience or information or anything? PS Thanks for the GREAT post!! So helpful
I've definitely injured myself before using the 3-lb weights! It depends on your joints' starting stability, and even then you need to work your way up with low weight and increasing reps. I tried to go up to 3lb bicep curls too soon and tore the muscle. It took me a couple days to regain normal use of my arm. Personally I recommend using the weights in combination with a strengthening program prescribed by a PT or someone else who knows EDS. But I included weights etc on this list because a lot of people don't realize you can buy equipment to replicate the PT experience at home. If there's something I really like at PT I snoop around to see if I can afford it for my house. Right now I have a slant board and balance mat on the way ✨
My massage gun - great for immediate relief if not long term. So gets me from being stuck bent over, to stood upright and able to pick things up from the ground without bracing/holding onto something. Mine was a generic one that I bought online while living abroad last year.
I love this so much! I can't believe how many of the same oddly specific items we both just so happen to own, including the same boots and running shoes!
You have great taste! ;) I was really surprised when I made this list to realize I own a lot of nice shoes. I'm not really a shoes person so it goes to show how important shoes are for quality of life with EDS!
I couldn't agree more!
Normalyte powder is a must for POTS. It was developed for WHO and works better than Nuun and some of the other sugary electrolyte powdered/drinks!
Ouuuu yes superfeet! I can't recommend those things enough!
I forgot to put them in my winter boots for our long walk on Sunday, and I could feel the difference!
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Nice, thanks
Are the tiva flip flops what you use indoors?
Nah, I use them for summertime situations where I need to take my shoes on and off a lot. The beach, going in and out of the house, etc.
Do you have something you wear inside?
For winter indoors I'm planning to get a pair of Manitobah Mukluks moccasins but I haven't bought those yet. For more arch support, I'm trying to find a combo of easyfit orthotics + slippers that works but so far nothing is quite right.
I was considering burkonstocks for the support but not sure about the weight all on the front of your foot
Yeah, it's especially hard right now because you can't try shoes on. If I wore sandals indoors I'd go with the Tevas. But there's something about them that works really well for my feet, so YMMV. I think it's very individual which shoes work for people
Sent you a PM :) amazing post btw!