My EDS Survival Kit || EDS Hacks || EDS awareness month

[@NorthernHedgeWitch]

I always am in shock when someone points out that the way my body is isn’t normal (it’s normal for me!). I know my thumbs are an issue, my physiotherapist and I have spent hours working on using the right muscles… but even knowing that, it’s so weird that peoples thumbs don’t hang like that - mine do! Haha. I am going to try out those supports

[@joanneclark8256]

how do you know if you have ads? when you flex hand strong does that mean your thumb won't at straighten?

[@theladyoftheforest6287]

I was thinking that tomorrow I’ll be asking everyone to show me their thumbs 😝

[@nicholekennedy362]

Omg girl this is something the Chronic pain world has needed was kitchen hacks . I’ve been looking for hacks for so many years . Now we need a chronic pain cleaning hacks

[@enelrahsink799]

How to keep house when you're drowning? Is a great book for talking about cleaning hacks? For people with mental illness in chronic pain

[@beeb6730]

OMG a shoulder support made for boob havers!! Thats amazing because yes I've done a lot of creative playing trying to get shoulder braces to somehow work around my chest!!

[@ChronicallyJenni]

absolute game changer! x

[@nicolelauderdale3919]

People always think all my little braces and aides are strange for someone “without” disabilities. Then I have to try and explain EDS ! Lol

[@nightmare3_o]

Girl you just like saved me. I had no idea my thumbs and finger joints weren't supposed to do the things they do!! Thankyou so much😭😭

[@RubyWalker-j1n]

I was dismissed outright by a doctor when I came speculating about hEDS because I don't have dislocations. However, I have discovered that many of my joints are unstable without any injury, and frequently sublux / go out of place with clicking and clunking noises. My scars look exactly like photos I found in a medical journal describing hypotrophic scarring... but I'm 23 and I "only" have mild-moderate daily upper back pain, so I'm doing physio for that and leaving it alone for now. I really recommend physio! And it's been really validating, because they've been able to tell me what is/isn't normal in terms of my range of motion and pain. It was really validating to hear that everyone isn't in pain every day.

[@Dulcimerist]

I have hypermobile EDS, with POTS/dysautonomia being really prominent. Compression calf sleeves like the marathon runners wear help me a lot, and I wear them pretty much all the time - I have daytime calf sleeves and also sleeves I've designated as part of my sleepwear. I don't like the full socks for compression at all, plus my size 18 feet don't fit in any compression socks. The calf sleeves work great! The brand 2XU is my favorite for calf sleeves. I've used Biofreeze, and its quite good. However, I really love old school Icy Hot. If any guys are reading this, be VERY careful if you apply Icy Hot for thigh pain!!! Epsom salts and a little Rubbermaid tub for hot soaks of my feet help a lot with foot and ankle pain. I also do soaks in the bathtub with Epsom salts to reduce muscle and joint pain, but be careful with that if you have POTS.

[@ChronicallyJenni]

Calf sleeves is a great tip thank you! I once made the mistake of using biofreeze for jaw pain and ended up just crying for hourse hahaha. Yeah my POTS doesnt tolerate baths at all unfortunately but I've heard epsom salts are so helpful x

[@Dulcimerist]

@@ChronicallyJenni Ouch! Biofreeze for jaw pain isn't good. I get a washrag wet and stick it in the freezer to have ready for that. One time I made the mistake or using Icy Hot for inner thigh muscle pain, which is something that males should absolutely never do. I was in tears and nearly fainted from the pain, after the Icy Hot migrated to a nearby area.

[@niamhbrady_]

I’m only halfway through this video and it’s already the most helpful video I’ve ever seen. I’m struggling so much right now. Thank you so much 😭

[@ChronicallyJenni]

I'm so glad to hear that sending so much love!

[@robinhahnsopran]

I think that headache halo is calling out my name! 😍I am also a VERY headachey person, and it sounds amazing!

[@ChronicallyJenni]

It's so beautiful, and made in canada!! x

[@misscazb85]

I absolutely love this!! I use the knee cushion and absolutely recommend it to anyone who thinking of getting one! Would love a hack for shaving my legs when I’m in the shower. I get so dizzy 😵 Spoons & Love 🦓🥄💜

[@ChronicallyJenni]

If you don't already have a shower stool that makes it so much easier. have been looking into long handled shavers so will let you know x

[@Git-R-Dun]

Men's electrical shaver for the days you wanna stay in bed

[@noctoi]

OMG the shower stool was a total life changer for me. Even on days that I Just Can't tm I can still manage to drag myself into a cool shower on those 45c Melbourne days. Having dirty hair and being over heated is really bad for my neck pain and migraines too so my shower stool is a permanent fixture now. The other thing I swear by is my bidet. Sooo many less hemorrhoids and similar issues since I got one.

[@takaidesu1046]

Omg i thought it was just me 😢 when my hair is dirty my neck pain and migraines get much worse

[@loooneybin]

if i may share a few things i've picked up as well: using a butter knife as a kind of leverage to get cans with pull tabs open has helped tremendously. i have fibromyalgia so my nerves are fucky and it helps not feel awful. i also have a (much smaller) laundry basket by my main one for those clothes you wear once, or try on once or twice, but aren't quite dirty yet, rather than sitting them on the chair of doom. if you have a million blankets, they do well all bundled and scrunched up as small forms of adjusting yourself Just Right. the only topical pain thing for me that's worked is white tiger balm but i loathe getting it on my hands, and it might not work quite so well on levels of hypermobility, but they have little spatula type things for diaper cream, and that has helped me tremendously with applying it on areas i can't quite reach as well as keeping it off my hands.

[@GeorgiaRobinson-e1u]

I’ve just been diagnosed with EDS and PoTs and your videos help me so much Xx

[@jaidenhansen4969]

Nothing Much Happens is a WONDERFUL sleep podcast! :3 it's short stories that aren't too exciting but are pleasant to listen to that can help you fall asleep

[@GeorginasJourney]

I have all of the same hand & finger supports/braces as you! I’m only at the beginning of the video, but I’m sure I’ll find a lot of other things I have in common too as I watch the rest of the video, so I’ll keep this comment short 😂😂

[@ZoJuul]

OMG I LOVE YOUR VIDEOS THEY HAVE HELPED ME SOOO MUCH 💖❤️

[@GeorginasJourney]

@ Hi!! Good to see you! 🩷

[@Buggy_Ari]

This is AMAZING! I'm just at the very beginning of my EDS/POTS journey (my doc didn't want to diagnose it for the longest time) and had no idea about the thumb/joint details! I'm going to look for possible aids covered by my state insurance since I'm unemployed and seeking disability, but I may have to save up for one of those canes 👀 Thank you for this! Especially the sleep hacks, sleep is hard!

[@penelopepolinsneemeyer4757]

Great ideas, Jenny! Thank you so much xxxxxxxxx

[@ChronicallyJenni]

Thank you Penny x

[@uniqueartistique5376]

Those compression socks are awesome!

[@amyrose3216]

Thankyou so much for making this video❤

[@supposeyounever675]

oooo I feel like compression gloves would feel amazing

[@nicholekennedy362]

Omg I am so thankful and EXCITED about all of the things you’ve shared with us. I’d never heard of the ringlets (that’s probably the one I’m most excited about ) the wondering pinky and thumb is the perfect explanation .

[@katkaplan3]

Looking fwd to catching up on your last 3/4 vids. Got behind 😂. Great shirt!!

[@ChronicallyJenni]

I'm so so behind :P

[@susanmargaretwills6432]

Hi Jenny just seen that u have an Instagram Live with Izzy this evening at 7.30 BST... that's 8.30 here in Italy so c u after supper!

[@takaidesu1046]

All this makes so much sense, thank you so much for the video

[@grace7624]

All my type of pillows are all bamboo ones too and I’ve used so many different kinds of pillows, this video is brilliant thanks for making it 💖💖💖

[@ChronicallyJenni]

no worries really hope its helpful x

[@peachysteel8349]

I've got the same thumb splints!!!

[@MrsXx]

These are brilliant, so useful, thank you!

[@ChronicallyJenni]

So glad they're helpful x

[@JennyCole1988]

Really helpful video Jenni. It’s interesting to hear what others with EDS find helpful. I might have to give those thumb splints a try, as my thumb just keeps dislocating. The headache halo sounds good too, although I can find ice can sometimes make my pain worse so I’d be a bit hesitant to spend the money on it in case it doesn’t help. I’ve also been contemplating getting some of these compression socks, but since my leg surgery have had problems with swelling so I’m not sure if I’d have trouble getting them on. I find ibuprofen gel quite helpful for muscle pain and also Deep Heat or heat patches. Also a wheatie bag I can put on the microwave is a lifesaver and means I don’t have to lift a heavy kettle. A POTS survival kit sounds great! I’m not sure if you get gastro issues, but a gastro survival kit could be interesting to. And perhaps one about what you take out with you if you’re going out for a day or going on holiday xx

[@ChronicallyJenni]

The thumb braces are amazing. I totally love the cold but have had some people who have found the halo too intense so as you say its a lot of money to risk. I'd definitely talk to Not Your Grandma's I'm not sure what their returns policy is but you might be able to see if they work for you I've also heard calf sleeves can be really helpful. I struggle with heat in general but wheat bags are a great idea. I do get gastro issues but it's something i struggle with so don't have many things in my survival kit at the moment. POts one will be out soon and will definitely do an updated whats in my bag video x

[@hannahcarter8840]

Any ideas on how to get relief from a large chest? I have ridiculously large heavy breasts and it hurts my shoulders to use a traditional bra but it also hurts to not use a bra. I have thought about breast reduction but my insurance won't cover it and my husband is very opposed to it. Thank you so much for providing all of this great information.

[@meganmarts5769]

I have one of those pasta basket things! I never thought of it as an eds hack. I use it to hard boil eggs

[@WiggleIsWiggly]

The jar opener gadgets always confuse me because they are essentially just rubber. I find putting rubber gloves on is so much easier to get a good grip than any of the gadgets I’ve tried. Obviously that’s just me though and I don’t have any kind of diagnosis other than scoliosis which I had an operation for 11 years ago and and asthma but I do have a lot of pain and weakness (drs don’t take anything seriously when you’re obese, they just tell me to come back when I’ve lost weight 🙈 Weight loss is difficult when you’re in pain and food is a huge comfort for me because I have adhd! I know I should lose weight but it’s emotionally very difficult and I struggle to stick to diet plans due to depression and impulsivity and exercise is very hard because I’m such a beginner plus all the extra pain - I think I have osteoporosis or something from the extra weight causing stress on my already misaligned spine (I had a spinal fusion in the bottom half but the top half wasn’t serious enough for them to risk operating)

[@silentfriend369]

I wrap thick rubber bands around the lids. Helps a lot ...

[@silentfriend369]

I'd wager you do have EDS. I'm so sorry they're discriminating against you because of your weight.... :(

[@WiggleIsWiggly]

@@silentfriend369 Hey, I left this comment a year ago and since then I have definitely realised I have some kind of hyper mobility issue as well as potential axial spondylitis (my sister was diagnosed with it a few months ago and I have all the same symptoms and it can run in families so we think it’s likely!) She didn’t reach all the requirements for a hyper mobility diagnosis but she explained what they were looking for like overextension of the knees and bending the thumbs back etc and I could do most of them! My friend has been diagnosed with EDS and I can definitely relate to a lot of her symptoms as well! Apparently it’s often a comorbidity with ADHD which is interesting 🤔 The more I look into it the more I’m convinced I have it tbh!

[@happikitty6591]

Omg your shoulder & thumb braces are game changers! I’ve really been struggling with both & have been searching for a thumb brace with no luck for a while now. I gave up on a shoulder brace that doesn’t squish my boobs for my right shoulder already. Lol That pair of hip shorts also looks interesting though my dislocations are so hardcore I’m not sure it would help. How easy are they to take off & on with things like the loo? (Not to be tmi) With the K tape, it’s common for us zebras to have adhesive allergies, (I’m one of them) they **do** make sensitive skin K tape which I got from the get go because I knew I was allergic but had read on my local EDS support group some people had success with it. I’ll only have issue if I leave it on longer than about 3-4 days. There are others in my EDS group who can’t use it it all, but a number of us who can. It’s a bit more expensive but not terribly so. Definitely give it a try. 💖 I’m moving right now without help except on the actual move date, my big hack besides mobility aides & meds is Death Wish coffee. (I only drink it on rare occasions) Only one big cup a morning at breakfast with modafinil I got from my doctors manage my long covid added fatigue but so I don’t throw my POTS too into chaos. Let me know how you do with coffee & heavily caffeinated items, maybe I’ll have to send you a bag… 😉

[@ChronicallyJenni]

Hey so sorry for the late reply. The shorts are great and do support much more than you'd think looking at them I have a pair of crotchless ones so you can wear them and still go to the loo without having to take them off which is super handy. Didn't know they did a sensitive KT tape I havent seen that before thanks so much for letting me know about it ill definitely look into it! unfortuneatly I can't tolerate caffiene at all with my POTS x

[@happikitty6591]

@@ChronicallyJenni No worries! Thanks for the info! Idk where the NHS is at with modafinil, when I was living there it was still only used for narcolepsy but you might check because that was getting on close to 10 years ago that I left. The slightly higher dosage helps me immensely. I don’t take it every day, only when I really need it because I absolutely have to do something & I can’t power through. Unlike other meds of its type it’s not a typical stimulant, it’s primarily a nootropic, so it doesn’t send your heart through the roof like adderall & the other traditional fatigue meds I’ve tried. There’s also no big crash (that I’ve experienced) like the others, besides just being back to being fatigued when it wears off, which is so fantastic. Only downside is it doesn’t give more energy, it just keeps you from being unable to think or feeling like you need to fall over & go to bed.

[@ruthmooney2855]

Thank you so much for this video, I may take your idea about how to dry my hair. May I please ask few things things- How do you exercise walking running and resistance training ? Is bloating part of EDS, because I can’t ware tight clothes working to cause bloating. How were you diagnosed, was it by a special PT office visit, genetic testing- what helped you get diagnosed. I’m struggling and seeing many symptoms that are under the umbrella of EDS including not liking heat and suffering from it especially when lifting as up- I said that to every Dr I meat and no one took that symptom seriously- and in your video here I head you saying what I feel- they told me pots is when you feel you about to faint or faint from prolong standing..

[@jcc21gg]

So helpfull!!! Thank you!

[@sarabartel4285]

I recently tried out a neck fan from Amazon that is fantastic for keeping me cool in the heat! I was skeptical, because I have an embr wave that didn't live up to the cooling hype, but this guy cools all the way around my neck and feels like a personal air conditioner! And it's reasonably priced. The brand is Jisulife for anybody interested.

[@ChronicallyJenni]

I absolutely love my neck fan! disappointing to hear about the embr wave I'm getting one soon so will definitely be interested to see what its like for me x

[@bananamustache3071]

Thank you!

[@jupamoers]

I've mounted a help to get in and out of the bath tub. I don't have EDS, but Spina bifida, which is also a chronical disability, a neurological one. It helps me a lot. The chair is a good idea too, but the tub will get stuffed 🙈

[@julsdeben]

Thanks for the incredible video! How do you avoid wrist pain when walking with a cane? Do you wear wrist braces when using them?

[@WiggleIsWiggly]

The long hot water bottle looks great! I bought a very cheap one and love it but filling it up is a nightmare! Never had a problem with the traditional shape hot water bottles but this one bubbles up loads and spits the water out at me? It’s really weird, no idea why it does it because I pour really slowly and everything so it must be the shape! Burned myself a few times already 😩 I’ll have to try the yuyu one, it looks really good quality and I like that you can tie it round you!

[@_Claire_Louise_]

My body's done exactly the same as yours with the k tape, I used to have it on pretty much all the time but now I blister really quickly with it on my shoulders and much less quickly on my ankles. I read a tip on redit that if you put milk of magnesia on your skin first with a cotton pad it gives a barrier that helps some eds people react less but the tape still sticks. I haven't been able to try it as I can't get hold of the stuff at the moment but if you can it might be worth trying, I know I'm going to try it as soon as I can because I need to be able to tape again!

[@_Claire_Louise_]

This video was really helpful now I've watched to nearly the end, it gave me loads of new ideas! I've not heard of biofreeze (I think that's what you called it) but I'm guessing it's kind of similar to deep freeze which is my hero product! I use the spray because I also hate getting the gel on my fingers, I'm generally more of a heat person but deep heat does nothing for me weirdly

[@Dulcimerist]

Does the special KT tape for sensitive skin give you had reactions as well?

[@_Claire_Louise_]

@@Dulcimerist Somehow I'm actually more allergic to the sensitive one

[@ChronicallyJenni]

Will definitely give the milk of magnesia tip a try thanks Claire! Biofreeze is similar to deep freeze but So much better in my opinion x

[@cr0wteeth]

i really need to get those shoulder and hip supports. waaaay out of my price range at the moment though unfortunately 😭😭 maybe one day

[@grace7624]

Where did you get the thumb supports from as I’ve been looking all over for them and I can only possibly get one for one hand but I need for both, would be amazing to get them myself if I can thanks x

[@ChronicallyJenni]

Hey Grace so sorry for the late reply there are links in the description of this video for the thumb braces or you can search push thumb braces hope that helps

[@katherinebraithwaite3794]

Where can I find that knife? What is it called?

[@karac.5807]

How about a travel survival kit?

[@ChronicallyJenni]

Hopefully one day I'll get to travel again but it won't be for a little while but as soon as I do I'll definitely do this x

[@ErinShanahan-cb9fh]

Where did you get your diagnosis!?

[@SunflowerLicie_Strong]

I have a shower chair too it helps

[@fishfish7985]

I can't find my one but I have a couple heat pads , it has 3 warmness settings and shuts off at 90 minutes witch my dad (ex fire fighter) was pleased with because apparently electric blankets cause a lot of fires

[@MrsXx]

Are you able to get the braces from NHS or are you purchasing privately?

[@ChronicallyJenni]

It's a bit of a postcode lottery with the NHS it seems it terms of what they will give you and what you have to purchase privately. Compression socks I think is one of the main ones that in some places they can prescribe them and some places they cant its so weird. it's always worth aksing your medical professionals if they can provide it, normally an orthotics referall is the best way but you have to get a referal for every joint which you think a brace might be helpful for. for me most of the time these things have been reccomeneded by OTs but they can't provide them so I've privately purchased them over the years.

[@MrsXx]

@@ChronicallyJenni I must have hit the lottery recycling bin with my postcode😆 thank you for your reply. Very helpful to know.

[@sarabartel4285]

I have the same sensitive to the KT tape, but it was helpful while I was able to wear it. On another note, those compression socks are awesome! Do you have any issues with compression gear in the warm months? I get too hot to wear a lot of supports in the summer.

[@Dulcimerist]

The KT tape that's specially designed for skin sensitivity is pretty much the only way to go for us EDS people. I get too hot as well. For compression, I just use the calf sleeves like marathon runners wear. It provides great compression to reduce my POTS issues, but it's not as hot or constrictive as the full socks.

[@ChronicallyJenni]

As Dulcimerist mentions below they have special sensitive skin tape apparently but havent tried it myself. I love the socks from not your grandma's they have such amazing designs. In the UK it personally never gets warm enough for it to bother me too much and if it's too hot for them I use other methods to help keep me cool x

[@tiimelydeath]

wanting to let you know that the subtitles on these are broken!

[@fishfish7985]

I am currently on the mmm about 6 th time around on no such thing as a fish it's interesting enough to be distracting but because I've listened to it so much and the format is always the same I can fall asleep really easily I set sleep timers on Spotify and I've found shh don't tell them that adds don't play bettween podcasts as much

[@agathakeyser-devlin6084]

How many blade types are there for the knives & do they actually do a good job of chopping? I love cooking & love my proper chef knives but just can’t use them anymore due to pain :(

[@ChronicallyJenni]

unfortunately I think there's only that one and a bread knife version so definitely not professional im afraid but there may be other types around which have different blades

[@kvarner6886]

Oh my god, I wish I could afford the double shoulder support. It's like $430 USD. My shoulders dislocate when I sleep, and I'll often wake up with them throbbing, numb, and full of nerve pain. Were you able to get the support for free where you live or did you have to pay for it?

[@kathy671]

I'd love a double shoulder support but at £263, I'll have to give it a miss :( Have you received any financial help/NHS for these products or do you have to self fund? I'm asking due to the silly amount of money that I've already spent on aids that just don't work. xx

[@joanneclark8256]

dont the pointing finger go up anyways ? of most?

[@joanneclark8256]

what doctor looks into eds? I get allergic to glue on bandages? how do you know you are ?

[@marsisgay99]

im transmasc and the boob crushing shoulder support actually sounds pretty great to me 😂

[@zmilez6011]

That's kind of what I was thinking too. Haha. 😅😂

[@joanneclark8256]

can someone speak on the shoulder issue please ... does 1 shoulder or 2 get troubled my mu can raise her arm

[@deimo3763]

I only just realised I have hyper mobile hands but this video is what told me my thumbs are weird too 😭

[@sierakelley4705]

Wait thumbs aren’t supposed to do that 😮

[@Hellisarickroll]

Just discovered at 25 my joint range of motion isnt normal wtffffff

[@SunflowerLicie_Strong]

Heat intolerant