Living with EDS: My Braces and Splints
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- Опубликовано: 24 июл 2024
- Hey guys, I am so glad I could finally get this video up for you! Here are some of the braces and splints that I frequently use. Do you guys use any of the same ones? Let me know in the comments!
Below are links to purchase some of the products mentioned in this video. Please check the sizing before ordering!
Tan Back Brace: www.amazon.com/Medical-Grade-...
1&keywords=neo%2Bg%2Bclavicle%2Bbrace&th=1
Lumbar Brace: www.amazon.com/Futuro-Stabili...
Abdominal Binder: www.amazon.com/MediChoice-Abd...
SI Belt: www.amazon.com/DonJoy-Sacroil...
Aspen Vista Collar: www.amazon.com/Aspen-Vista-Ce...
Aspen Vista TX: www.amazon.com/Aspen-Thoracic...
Aspen Vista Multipost: www.amazon.com/Vista-Multipos...
Philadelphia Collar: www.amazon.com/Ita-Med-Philad...
Corflex Soft Collar: www.amazon.com/Corflex-ULTRA-...
Releaf Neck Rest: www.amazon.com/Caldera-Releaf...
Silver Ring Splints: www.silverringsplint.com/
Oval 8 Splints: www.amazon.com/Products-Oval-...
MetaGrips: www.amazon.com/Push-MetaGrip-...
BuddyLoops: www.amazon.com/3PP-Buddy-Loop...
Rejuvahealth Socks: www.rejuvahealth.com/rejuvabra...
Vim&Vigr Socks: www.amazon.com/VIM-VIGR-Compr...
Vogmasks: www.vogmask.com/
This video is not sponsored by any of these brands
My Instagram: @watercolor_me_impressed / watercolor_me_impressed
My Etsy Shop: www.etsy.com/shop/ChristinaPa...
My Redbubble: www.redbubble.com/people/chris...
My Medical Facebook: LoveOnChrist...
My Personal Facebook: / christina.doherty.315
My Email: Watercolormeimpressed@gmail.com
Daily Beetle by Kevin MacLeod is licensed under a Creative Commons Attribution license creativecommons.org/licenses/...
Source: incompetech.com/music/royalty-...
Artist: incompetech.com/
The silver splints and rings that you use on your hands are really quite beautiful! Thanks for sharing what helps you.
Thank you! I love them too :)
As someone who has many chronic illnesses, I admire videos like these. I have cerebral palsy and my muscles are super tight. The tight muscles in turn will pull my joints out of place. It's a normal thing for me and the people who know me, but apparently not to others. I'll be at work or out in public and my hip or finger or ankle or knee will dislocate and strangers will freak out. The look of sheer terror on the faces of others is a reminder that this isn't "normal".
watching videos like this as a person who has no severe chronic illness is so wild because people will so casually talk about dislocating jaws and hips and move on to the next topic while my head is still ringing in horror "You dislocated your WHAT?!"
+Antonia B. Hahaha sometimes I forget how not normal it is in everyday conversation and peoples eyes get very very big 😂
Antonia B. I was diagnosed because my family Dr noticed me placing my ribs w a chair during my daughters visit...same reaction... Do you need meds for pain omg....when you popp your whole life its not as painful as less stretchy folks...it hurts but less then a break
Before I knew I had EDS (was just diagnosed a few weeks ago) I was in the Army... I used to dislocate my arms and fingers just to grouse my battles out. I thought it was funny as hell... With all the pain I'm in now... Didn't realize the joke was on me. 😒
Lmao you should see people’s faces when I dislocate a joint around them and then move on after relocating it like nothing happened 😂 😟
@MultiTalented Writers I have had several doctors doubt my dislocations because I didn’t have history in my medical files of going to the ER for every one of them but I tell them if I went to the ER for every dislocation I ever got I would live there, and why would I sit there with something out of its socket waiting to be seen for someone else to pop it back in at the hospital when I could just pop it back in myself and not even have to leave the house. That’s put it in perspective a bit better for a lot of people haha. Not that we should have to justify anything
I never thought your rings were splints wow, I just thought they were just really cool jewelry!
I hear that all the time. It makes me happy, I think it looks pretty cool too :) Now they just need to make stylish neckbraces XD
Christina Doherty really! they look cool on their own but i don't know, your personal style just goes really well with them and makes them that much cooler!
Glad I scanned the comments first, cuz this is exactly what I was going to say. Lol
yeah until watching this video I just thought they were really cool petite Chevron rings that are worn at the top of the finger tips and fashionable right now! and that the thumb splits were just cool silver pieces that were your style! it's amazing g what you can find out there if you take the time to hunt it down :). very cool!! :)
I thought the exact same thing!
It's unfortunate though how expensive all the braces and splints can be 🙁
+briabear1 I know, its really unfortunate. And insurance often doesn't want to pay a whole lot, especially if they are made out of state (which the custom ones I use are).
I wanted to come pop back 6 years later to say your educational videos along with some other peoples, I’ve learn I have hEDS. And am so grateful for the information you’ve provided in the past ❤
Oh, I thought the hand splints were just beautiful and unique pieces of jewelry, that is so cool!:D
+Camilla Jensen I know right? I wish all braces were that beautiful ❤
This video is how I found your channel and i'm so glad I did because you're so delightful and positive and it really makes my day when i see you've uploaded.
Thanks for being so open and showing us your splints. I had not heard of EDS until I bumped into your vids. Great videos, hope 2017 is a healthy & happy year for your and your sister.
Thank you so very much from he both of us
This was the first ever video I saw of yours. I was looking into braces for myself and I've been watching ever since
Actually, with all that armor you could come up with a pretty neat cosplay. lol :3
Watching your videos make my heart happy. You have such a vibrant and vivacious personality. I love the way you share your world with us, and it's going to improve the world one person at a time. Thank you for being a beautiful spirit inside and out!
Thank you for your sweet comment :) Im glad that I can make you happy!
Great video! I am a nurse in Canada and use to work in orthopaedics so saw some splints there. Love watching your videos and learning. Just started watching your videos recently. You do such a great job explaining everything.
Aww Thank you! I try to explain everything the best I can :)
Omg I'm seriously so glad i found you and this! Thank you for the great info!
You're welcome
I was diagnosed with EDS hypermobility type yesterday at the geneticist and I'm still trying to absorb everything and figure what my next steps are. I'm 17 and relieved to finally have a diagnosis I'd love to hear anyone's tips who lives with this condition
I know it's been 3 years but Im just like that. 3 days ago I was diagnosed and Im also 17 haha. Hopefully you found some stuff that works out well for you!!
Thanks for sharing Christina, this is really helpful. My PT recommended me to check the EDS CMC ring splints and I wasn't sure where to look, but I remember you had a video about it thaaanks!
It's nice to say pretty compression socks. I wear a left leg AFO and right now I'm just putting white men's tube socks under it.
pretty compression socks are a total must! No more boring white or "skin tone" for me! :)
Awesome video! I am so excited you showed that metagrip one, as that's exactly what I was looking for! My thumb joint is the worst! I also use rings from the Silver Splint company and I couldn't be more grateful to have them. I am going to check out the rejuva socks! I have Zensah ones right now and I really enjoy those too. :) I would love to see more vids like this, it was super helpful.
+TheGreenQueen Thank you! Ugh I swear I tore my house apart looking for them to show. I had my entire family searching lol. But hopefully you got the gist. Things get crazy when you are always packing and unpacking. I hope you like them!
I've been dealing with this for years but doctors over here (Ireland) have no idea about EDS so won't properly diagnose me! I've been to 6 or 7 doctors now some say I have it and others have no clue what it is, I've lots of the symptoms and always in pain but no one ever takes me seriously cause I'm not officially diagnosed. It's so stressful but watching your videos helps me understand myself more and remind me that I'm not alone so thank you :)
Im so sorry you are in that situation. Its so hard when nobody believes you, nobody should have to deal with that on top of being sick. Don't give up on your search for answers, but in the meantime we are all here for you
Hey Siobhan, I'm from Ireland too. Sorry about the difficulty you are having getting diagnosed. Are you on the public healthcare system or private? If not maybe you should try seeing a Private consultant and see what they have to say? Also if you've not been properly diagnosed then now is the best time to get private heath insurance if you haven't it already :P
@ChristinaDoherty Same! I was just watching your videos to see what the next steps would be because my doctor basically said 'physical therapy is good for when you have a specific pain, it doesn't really help when the pain is everywehre'. So I'm trying to figure out what kind of supports I can get. I'm interested in getting some finger splints because my fingers give out a lot on regular tasks.
I'm currently wearing an aspen Vista multipost cervical collar. I really love it as it has an air pocket in the back that I can pump up and control how much pressure and fit in the brace
Your video came up in my recommendations. Probably because I've been looking up videos for different conditions we study in nursing school. I can't say I've heard of EDS, but find your videos very educational. Thank you for sharing! And I don't notice a lisp. :)
Thank YOU for watching! I always get so happy to hear from future nurses. Having a good and understanding nurse make such a huge difference during a hospital stay/doctors visits. The nurses honestly become your friend and family
That was so much info I have learned a lot from these now I will never look at the people in braces the same so thank you for giving me the information
+Caroline Scogin Thank YOU for watching. Braces and splints can be pretty intimidating when you just happen to see someone wearing them. But we are all just people trying to function the best we can lol. I know that all this has taught me so much myself. I think that when people see you in a brace or wheelchair they feel really sorry for you, but a lot of times we are thrilled to have the right braces or chairs because it just helps us live our lives
Dudeeeee your shirt and jewelry are amazing! I neeeeeed😂
I love your deans amulet necklace... isn't supernatural just awesome xx
Thanks! It totally is! Im not caught up anymore, I think I need a good binge watch :)
Omg
@@christinadoherty3212 first off I just need to tell you this you are by far one of the most inspirational people I've ever seen put themselves out there on the internet and I respect the hell out of it and you but your mind me and my little sister she has a lot of things wrong with her epilepsy a rare rare disease kinda like EDS and it's called hyperprolinemia type 2 and it's nice to know that there are others out there
My mum has eds. I am 14 and recently have been having subluxations in my elbows and thumbs. My new physio therapist realized that I had hyper mobility, and after finding out about my mum's eds I am now being diagnosed too. Thanks soo much for this video as it has helped me find splints and braces that work for me
+Boo 1810 Awww thank YOU! Im sorry you are living with this too, but at least we have social media to build a community of support 💜
AWESOME VIDEO. AWESOME NECKLACE. #SPNFAMILY
p.s. I have Hypotonia so I know some struggles you have I have too. But I do know you have more struggles than me. Thank you for this very amazing video, teaching me more about EDS.😊
This is the video that brought me to your channel :)
This was the first video of yours I saw! I had recently gotten diagnosed with EDS and was watching videos about it and this popped up! I'm entered in the giveaway under a different email address, much love Christina !!
Thank you so much, I'm going to my doctor tomorrow and I can show them this so they can understand what I need for my EDS
Im glad I could help! We are all so different though so hopefully you can find what works for you!
I actually sent this video to my medical supplier since I'm the first EDS patient that he's dealing with and this way he can get around about view of what actually does I need when I asked about different things. And the great thing is is that other people in the company he works with and is affiliated with all want to see the video as well so you not only impacted my life with me having EDS but you also impacted the lives of people that haven't even been diagnosed yet in my area in Pennsylvania
Christina I have found the brace that you can remove the bars at the back, while searching for a back brace.
the one your friend modified. it's called the "OTTOBOCK DOSI EQ POSTURE SUPPORT"
I have a ton of trouble with migraines. Some times they really jack my neck up. I have found that wearing a neckbrace really helps. I too have had people ask questions like that. Sometimes it irritates me other times not. Just depends on how they ask it. I have a friend on IG that has what you do. I could not track what she was typing when she was describing it. Your video helped me understand better. Thank You. Hope you are well. Have a good one.
I have eds hypermobility type 3, POTS, tethered cord, chairi malformation, scoliosis, high functioning autism, ptsd, sensory processing disorder, dyslexia, chronic, depression, anxiety, etc. I'm a zebra warrior! and love the video you made!! I have so many braces as well. I have kafos, afos, silver ring splint, neck braces, etc. I totally understand your challenges
+kaiden.Respects247 Wow that's definitely a lot! You certainly are a warrior 😘 Keep being awesome!
This is really helpful, especially the different neck collars. I've just found out I need C0-c6 fusion and being in the UK i have ti fundraise the whole amount. Ihave an aspen vista which is not the comfiest after a long period so I love how you mix and match your aspens. I may do the same.
Hey lovely, sorry for stalking you this week- your vids are just so educational and positively presented.
Please can I ask how you balance 'supports' Vs 'immobilisers' Vs 'braces' for day to day mobilising around the house? How do you manage to balance and regulate joint physio/ normal use/ minimise atrophy/ manage instability? Or do you just go by the pain each day? Or do you rotate joints you use and immobilise and rest?
Something else I just can't get over is the car journeys you endure for therapy.
I still drive, myself, but these days I can't drive for longer than 20 minutes, and can't be a passenger longer than 40 minute stints. I'm working 3hrs once a week despite fact I was working 20hrs/week 3yrs ago.
I'm just bowled over by your resilience and discipline but intrigued mainly by how you maintain muscle tone safely with braces, immobilising and normal joint use.
Xxxx endlessly proud of you and cheering you on with pom poms from the sidelines in London, UK xxxX
So I stumbled upon your feeding tube video because someone else I watch just got an NJ tube.. I really enjoy learning about different disabilities and how different people coupe with them. I may have only watch three of your videos but I bet your really glad your finger braces don't actually look like braces. In one of your other videos I thought your thumb ones where just and interesting style of jewelry.
+Leo_The_Kat So glad! I don't really mind wearing ugly braces when I gave to and they help. But I am ohhh so happy when there is a better option hahaha. Now if only they made other braces that beautiful!
Yess, I dont even remeber how I found the Frey life but I really enjoy watching them.
Whoop Whoop!
Leo_The_Kat same, the feeding tube video came into my suggested after watching the Frey Life and I love learning about anything and everything
So informative, thanks!❤️
I wear silver ring splints too! I wear 4 on my DIP joints but I'll get 2 more probably within a year or so bc they are MAGICAL! Mine are actually from an etsy shop called LovetheBugs - for anyone with EDS looking for rings like hers I highly recommend that shop & advise that you use their ring sizer (which they'll send for free if you purchase a ring) bc it's not the same measurements as the ones SRS company uses. They don't make the thumb splint though, but they do make many other kinds.
The reason I clicked on this video is I'm still looking for effective and wearable back and knee braces so I will for sure look into some of the ones you showed. Thank you for this video it was very helpful!
+Ruby Gotta love ring splints :) I will definitely check out their shop and pass on their info 😊
Wow you have a lot of back braces!!! Your channel is awesome I love it🙂👍
+Carleigh Y Lol yeah, I guess I just had to collect them all 😂
Seeing you thrive gives me hope...
your necklace is amazing!😍
I as well have loose joints and ligaments. I found out almost 8 years ago that I have kyphoscoliosis, I'm not sure what type I have, and I'm still looking for the right back support or brace for me. This video did help a little tho. I'm sorry that you are going through all this! Best wishes!
I would definitely recommend having a custom brace made if that is what you need. Especially with kyphoscoliosis its going to be pretty hard to find an "off the rack brace' that gives you the right support
I do have a thumb splint for the CMC :) i have a lotttt splints. For dip, pip, CMC, MCP. TMC and IP (and splint for wrist). 😊 I love that better than my brace from all the other material haha.
I love your videos! Have you ever tried a SDO suit for your hypermobility (EDS)? My next step will be trying one of those out. 💞
+Moa Jansson Thank you! I have mot tried one as of yet, you will definitely have to let me know how it goes. Compression wear isn't always my friend with the G tube. It makes it much harder to access and can cause the feeds to back up if its tight enough.
I have 4 braces for my severe scoliosis and I thought that was a lot. Thank you for sharing, I love your personality.Your TLSO kinda looks like mine, btw :))
+Indi Sugar Taufik Ooh brace twins! I have such a love hate relationship with that brace lol. I hope that your spine is doing better these days
Your hands look so pretty with your rings splints! I have a few also and they really do help and are attractive. Just a quick question for you....the thumb splint, did it take you a while to get used to the U part of it that hits the palm? THanks for doing these videos!!!
+Dawn Laughlin Yes, it did definitely feel tender there at first. But I am very used to it now and I think its a bit less tight from use. I barely notice it anymore.
Thank you! Trying to get used to mine...
Thank you for making this video I have EDS and was looking for good compression sock s
So this really helped me
Thank you I found it very helpful xx
I feel really lucky that my EDS isn't this bad. Granted, I do have my issues, like when I'm raising my hand my shoulder pops out (doesn't hurt and I pop it back in no pain) but what really gets to me is when I play my instrument my fingers will bend when I hold the bow and press down on the string. I'm hoping to get finger braces soon to help that problem and others I occur. I play double bass if your wondering
I can’t wait to get some custom ring splints! Were they difficult to get used to?
Thank you for the information!
Have you seen the spinecor brace for scoliosis? It might be helpful
may I ask what the face mask helps with? I'm recently diagnosed with eds type 3 and am still figuring out everything. also, may I ask how expensive the finger splints ended up being? I have a few plastic ones but I think the metal ones would work better.
I have EDS for 18 years and just couple of years ago my doctor told me that I have EDS lol. No one was believing in my pain. Whatever. I just started to use splints and braces. But why do you use the mask and the oral splits? I am asking cause maybe I need them. I am still learning about my pain and body. Thanks for sharing this!
Hi I reasonly found out I have mallet finger, I have consulted doctor and he said there is no treatment.I am a software engineer it is so difficult to type using that hand can I use the splits while working..it will be really helpfull if you please answer
I'm in the process of being fitted for and slowly acquiring my own silver ring splints. I have three at the moment and I'm running into a roadblock with my middle fingers. They're my loosest finger and my OT is worried about whether or not we're gonna be able to splint them enough. Do you have any experience with overlapping the swan neck splints on any of your fingers? I know the site says you can, but I haven't seen anyone do it that I can ask, so far.
You seem to be so positive even though you are going through all of your medical issues. I am going through some of same medical issues and I am not always upbeat. I should start to be more upbeat like you are then maybe it won't seem so bad. I had lax ligaments it is like a very mild EDS it basically only involves my joints including my neck and back. I have had my knees realigned to stop them from dislocating. I have also had my rt shoulder reconstructed to stop it from dislocating my left shoulder will sublex if I lay on it wrong, so when I wake up I have to make sure the shoulder is in the right position when I go to move it I most recently had my neck fused in three levels an my lumbar spine fused in three levels to. I am going to have to try the thumb splint since they have recently started to dislocate to.
+AshnKksmom2 I do try to be as positive as possible, but hey, everybody has their days. Sometimes we deserve a day like that. Im sorry to hear about all of your joint issues. EDS is pretty terrible sometimes 💜
I actually had to use the Neo G Clavicle brace when I injured my back at work. That helped to support my back for several days while on medical leave. Super comfortable but my doctor had to help get it where it's comfortable and the right shoulder had to be padded because of an old injury and the back injury flared it up. I found it quite comfortable and worked better then other braces though I did use it with another brace at times. I still have it. 😌
This was a good video to show your braces. I have a friend who has EDS and uses several of these.
And I'm wondering if those finger splints would help with the arthritis in my hands. Especially my right hand because I found out recently that I have Osteoarthritis. I have Rheumatoid in my left. Only 37 but it runs in the family (mom developed Arthritis at 39).
It can! I believe sometimes they’re differently shaped for arthritis but if I remember correctly I think silver ring splints (linked in her description) has a document on their website about it
@@centaurora913Thanks! 😊
Is it wrong to place my own dislocations?... I popp soon much I just pop em back...medicade won't help me w braces
this was interesting to me. I have a CASH back brace I have to wear all day as my spine is my worst "joint" and I have kyphosis, scoliosis, lordosis and a minor twist in my spine. I don't feel fully supported in the CASH brace, but it's better than others I've had, and I was given a soft collar for when my neck pain is severe, but I never wear it outside for the same reasons you don't!! I'm seeing my orthotist next week so we will see if my back brace changes at all. I'm also more concerned about my knee instability and my horribly flat feet, but as I'm in the UK I'm not sure the NHS want to pay to strap me up head to toe in supports!!
+faerieevenstar Best of luck! Im sorry to hear that you aren't fully being supported. Its so hard when it comes to bracing. Its very expensive and even for me it isn't always covered. I hope you are able to get what you need ❤️
New to this channel and I love the way you describe everything and your voice is so soothing! Can you explain why you wear the mask?? (Sorry if you have answered this a hundred times already hahah)
+swaits622 Lol thats totally okay! I have something called Mast Cell Activation Syndrome/Disorder. It basically means that my body overreacts to environmental triggers as if I am allergic. So the smell of perfume,smoke, air fresheners, food, detergent etc. are all things that can send me into an allergic or anaphylactic reaction. That is why when I am out in public I have to be very careful and often wear the mask to help to block out some of those triggers.
this is very helpful thank you
Great video. What is the mask for? I think I need an official one bcz I have mast cell
one of my ribs subluxed whilst watching this video, how ironic. that eds-life amirite?
+Jessica Morén Lol its never boring! 😂
Hi dear, I'm an EDSer too (and dysautonomia) and I want to thank you for your videos, strength & power!! You have helped me a lot. I'm in Phoenix, AZ and it is really hard to find a doctor that knows anything. Only one I know of, and it is really hard to get an appointment, unfortunately!! I went to the EDNF conference in Vegas last month and it was such a relief to meet people that understand us
+pikkulena11 I am so glad you got to have some quality zebra time!
Umm for sleeping I never found any brace that helped. When my hips were immobilized it helped a bit but that’s obviously not a practical solution. The best I have found are pillows. Lots of pillows. A bit U shaped body pillow made for pregnancy, a pillow that goes in between my thighs/knees, and usually a couple of foam c/neck pillows shoved under my SI for good measure.
Do you have any tips for subluxations in the jaw?
I need to get myself some of the silver splints for my fingers and a vogmask, but i may just have my mother in law make one for me. I have lupus and JRA and my hands and fingers dont always work.
I still am using my Hip abducrion brace. But my fingers splints where stolen I also have a custom leg to lumbar brace starting at my toes ending right at the bottom of my ribs
Very interesting. You have a very sweet voice! :)
Thank you
This might seem like a strange question and perhaps you answered it else where but how do you know which splint you are going to need before its too late, if you know what I mean. Is it just something you will have feel for or do you have a lot of pain there? I have to admit I've never head about this illness until I randomly discovered your channel. Though I'm glad I did!
You know, everyone is a bit different on this. Some of us choose to brace everyday to prevent injuries and some of us choose to use them more sparingly. In my case I really only use bracing/splinting when I absolutely can't function without it because I am afraid of my muscles relying on a brace. So I will only use them when I have a really bad day or and injury in one area. That being said I have had to rely on them much much more in my past
Thanks for the response. Only saw this now Some odd reason youtube doesn't notify me when someone responds to my comments anymore.
I'm not sure if you know this or not but I thought I'd respond anyway in case someone else doesn't know about it. I was having a similar issue with comments and notifications of new videos as well. Turns out receiving all notifications is now a two step process. First you have to hit the subscribe button and once you do this little gray "bell" icon will appear next to the now faded "subscribed" button. Click the bell and a small window will open that gives you the option to get all notifications, click the box in front of statement "send all notifications" and then select "save". This should help you receive more of the notifications for channels you subscribed to. You may have to double check all your older subscriptions to make sure the bell icon was clicked and sometimes even with the bell thing RUclips doesn't always send all notifications. Also, RUclips has been known to remove channels you want to be subscribed to from your list and you have to re-subscribe, though it can be hard to notice that you aren't subscribed anymore unless you kept a list of all the channels you want to be subscribed to and occasionally compare that list to your subscriptions on your channel page. I hope this helps :)
Hi Christina. Although I'm not someone with EDS I am looking to find a custom brace because I can't seem to find one that fits me correctly. I was wondering if you had any tips. Also, I'm from the same area. Thanks!
+emma etcetera Well it definitely depends on what kind of brace you need. But the best thing you can do is to see a specialist called an orthotist. They can talk it through with you, take measurements/casts, show you samples, and help you figure out the payment. Its really hard to buy off the internet or off the shelf if you don't know exactly what you are looking for. There are a lot of places locally, we live in a really great area of the country for braces/rehabilitation 💜
Christina Doherty thank you so so much. I've been trying to buy online and off shelf and NOTHING fits me right and gives me the support I need. Hopefully this will work out!
Thanks so much for shearing...i'm currently trying splints out...and i never knew there is no ring for the cmc joint...(i hope it's correct what i'm typing because english is not my speaking language) But thank you so much for this info!! Big hugs from Holland :D
+Juul Your English is wonderful! I know, I totally wish there was a ring for it. Maybe someday... but the metagrip splints really are amazing at what they do... they just aren’t as pretty 😊
Where did you find your dean necklace?? I really like it.
+Abby M I found it on etsy 😊
Hi Christina. My sister watches you every day and you bring so much happiness to her. She uses the aspen vista collar and we’ve been looking EVERYWHERE for the extension we see you wear in several of your videos. It’s the one that attaches to the neck brace and wraps around your middle to provide more support. Any help finding the name or place we could buy this would be amazing.
The model is called the “Aspen Vista CTO4.” Then the model “Aspen Vista CTO” is exactly the same but without a second bar down the back. The barb is removeable though so I think its worth getting the CTO4 model.
Thank you so much! We will look into it. Again, can't say how much we love you and your videos!
I love your supernatural necklace 😍
+Melissa Henderson Mier Thank you! I love it when people notice! Its kind of like having an inside joke :)
The Donjoy SI is awesome, but not for sleeping (I wish there was something with the same support)
+pikkulena11 Agreed! Its definitely the best for standing and walking. I find if I sit wrong or lay down it pops up around my waist
Did insurance pay for your ring splints? I currently make my own out of thick wire.
I love your necklace aaaaaahhh!!
+Sky Close Why thank you 😊
I haven't tried any braces yet for any of my joints, although I was basically just diagnosed. Usually I will have back pain and just end up having to lie down for a couple hours and then I feel pretty good again. I guess I also am a bit unsure about wearing braces because of the whole EDS stigma that people have.. Idk yet, I am still figuring it out. With the mask, what do you use that for? Anyway keep up the great videos :)
If a brace can help you be more productive with your time then it is totally worth it! Who cares about stigma! You could try the SI belt that I showed, its super low profile. I wear it all the time and nobody notices.
Also I use the mask because I have Mast Cell Activation Syndrome and react to a lot of scents and airborn allergens.
Any suggestions for splits when experiencing pain in you knuckles and need stability
+Fables 456 Definitely love my silver ring splints. They are from “The Silver Ring Splint Company.” You can see in the video that I have them on my “higher knuckles,” but they also make a style that stabilizes the knuckle at the level of the hand. I believe it may even be called their “EDS Splint.”
I had a question for you. I was diagnosed with EDS (however since I've moved I have to fight for medical care again against the odds) most have no idea what it is or what I need. Some look over my list of surgeries and see it as attention seeking rather than the commonality of connective tissue disorder! As such it's hard to find medical care. Question is have you had muscle spasms that lead to dislocations and/or actual muscle damage?
I'm supposed to see a neurologist this week who may recommend (again) Botox to reduce the pain I get from headaches due to spams moving vertebrae in my neck (or that's what one of many opinions by general GPs was) I can't find any support or anyone to ask... I thought I would ask you, since you do amazing videos and speak so openly.
+Silver Thompson Oh yes! Muscle spasms are one of my most enemies. They have always been one of my biggest issues. I am on very low dose muscle relaxers but I get regular muscle spasms as well as something called dystonia which can range from mild twitching to full blown seizing. Calming down my muscles has been our biggest challenge. The thing that has helped the most has actually been doing Physical Therapy and strengthening my muscles. You would think that stronger muscles would be tighter, but really, in my case at least, they are spasming because they are too weak to properly support the body. I have also, believe it or not, gotten some relief with self hypnotism/meditation. Especially with my jaw/neck spasms. I hope you are able to find the right care soon and can get some relief. Have you ever seen a neurosurgeon to address your neck?
Christina Doherty I am supposed to go next week, but I'm not feeling hopeful about it. Rumour has it this doctor is not very compassionate and often treats folks as if everything is a psychological disorder then prescribes meds. :( Botox has been brought up by a couple of doctors but I admit it scares the heck out of me! Especially in the neck area! I downplay everything because ultimately I have no support network so your videos are a god-sent to me. I'm not sure I have enough fight left in me to battle the medical profession. And trying to explain heart palpitations that come and go (and never while being tested) doesn't help. I once spent an hour taking my pulse (but who needs to when you can feel when it skips a beat!! Ouch!) every sixth-eighth was skipped. That episode scared me. I've had so many surgeries.. and issues come up I never knew was EDS. Thanks for sharing with us. For some of us.. you ARE our entire support network! ❤
So beautiful !
+anna gibson Why thank you!
Your comment about people out there wanting to see girls in their braces/splints was PRICELESS! While it's funny at the outset, I definitely don't want you to be exploited for trying to show us what you use, hahahah. :P
I'm on my third GP since I found out about my family history -- he really seemed interested in learning about EDS, albeit quite overwhelmed by everything involved. He made sure the veins/arteries in my legs are fine & did some xrays of my hip joints & lower spine [my visible veins are just the VEDS but all of the pain in them is from scoliosis, which was a huge shock to me]. After my gastroenterologist appointment, hopefully the next step is physical therapy & an orthopedist... I know you can keep your muscles from "depending" on the braces if you do PT but I definitely need some supports during the process because there are some joints that seem to be immune to whatever precautions I take! [I'm sure we can all identify with that.]
I'm so glad you're doing better after your stenting surgery & getting your TMJ splints fitted. You really have your life back in you, which makes me so happy to see. Here's hoping you stay on the right track for a longer period of time xx
Thank you so very much for your sweet comment! Its definitely a fine line to walk between wanting to support your joints but not weaken them. That is why PT is so important. Our rule is that if a brace can help me to do the PT exercises that I cant do without it, then its worth it. :) Best of luck! sounds like you are on the right track!
I love your videos. :) but I'm just wondering if I missed a video? Why do you have to wear so many? Is this a thing caused by EDS or is it something else?
+Amanda Hernandez Hey there! So EDS is a connective tissue disorder, so among all else, it gives me very loose ligaments. My joints (including my spine) are very unstable and often unable to hold themselves together. That is where the braces come in.
Btw I looooove your comment about those who watch splint videos for "non-educational reasons". I made the mistake of doing a walking video in my knee braces, never again lol.
I know this is super old but I miss you Christina!
I know how u feel I have eds too I have been in a brace for 6 months so I know how u feel I have rings and a knee brace
I thought you were some kind of movie star. I am going to watch all of them.
Christina I was just diagnosed with eds
love u girl ❤✌
Just seen eds today Im looking into this i do see using ultra sound treatment to send a vibration to the tendons to tighten them some horomone treatment checking out using magmatism and electrical muscle treatment to build muscle and tighten tendons so you dont damage your body as much im looking into what creates this to prevent it as well so im gonna look into your parents histories as well to pin point this as well your surroundings that may have caused this im looking into chemical and ultra sound possibilities in the womb a dolphin use them they use them to communicate and also to attack so with ultra sounds being new either way i got to see if a neurological problems that might accure long story
I have EDS but rly mild compared to you 💖 I feel like I'm not allowed to be unhappy about it because so many others have it worse and I'm being mean 💙💜 but I don't know why you have to wear a mask? does anyone know what that is for???
+Maddie Horwood Hey there! We all have our own struggles. Your emotions are totally valid.
I wear the mask because I have something called mast cell activation syndrome. So I have allergic reactions to a lot of things, particularly smells. When I go into public I have to wear a mask in case there is smoke, perfumes, food, etc.
Christina Doherty omg hi 💖 u are actually talking to me 💜💙💜I like you even more now 💖💖💖 thanks for telling me 💖 im really nosey 😊💙💜💙💜
what is the mask used for? could it be used for chemical sensitive people?
Jodi Tucker she has Mast Cell Activation Disorder and I'm pretty sure that's her main reason for wearing it in certain situations.
Jess D I have the same issues but can't get doctor to diagnose. I have wierd sensitivities, that's why I asked what she could wear it for. Chemicals, perfumes, outdoor smells etc
Jodi Tucker Have you seen a hematologist? If you join some of the FB Mast Cell groups maybe they can help direct you to a doctor in your area.
Jess D have, not seen one of those. I will have to look into that. Been chasing these symptoms for years, have recently been able to find information better since people have been sharing their stories! Thank you for the suggestion, would love be to find the reason since most people around me don't think it's real. Very frustrating
Thank you thank you my fingers are constantly dislocating so I’m gonna try the ring splints!
Edit: there so expensive and I doubt they ship to the uk 😭 if anyone knows any links please comment them
I know this was a while ago so you probably already know but there are a few etsy shops that sell them and i think there might be a uk one. The only one i know it’s zebra splints but it should be searchable
I thought the rings might have been splints, but then I was like "That's not even a thing...or is it?"
I guess it is. lol
No AFO’S??
What is the mask for?
+Megan Yandell The mask is because I have mast cell activation syndrome. This causes me to be very sensitive to environmental triggers like smell. So when I go into public I have to wear it in case I smell perfume, smoke, air fresheners, or even food. Otherwise I could go into anaphylaxis
Oh ok, thanks for replying!
I just found this video, I atomaticly noticed her hands, intuition told me it was functional and fashionable
Hi, I'm so glad you found those braces and splints! It's a real cure! :) Does your thumb do the same thing as mine by the way? (Check my channel for it). If so, could you show it if it doesn't hurt? xoxo
#spnfamily
I love your supernatural necklace. I have the one. supernatural geeks😍
Lol YES!