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Wobbly legs, need braces!

Hey everyone!

I have #Undiagnosed hypermobility (either HSD or hEDS, diagnosis pending) and my limbs like to collapse in on themselves at very inconvenient times. My knees have been particularly bad lately and while I'm usually able to 'catch' myself on my other leg they've taken to collapsing at the same time lately where I have to grab onto supports.

I'm seeing my doc on Monday to ask for a prescription for knee braces but I was wondering if y'all had any recommendations on type / brand that I can get her to write down? My insurance requires a lot of specificity and she's very good at following my lead but I need to know a few types before I see her to make sure I don't have to go back if it's not the right one for my (admittedly uncertain) diagnosis.

I'm looking for something with lots of stability for wobbly, hypermobile, weak, and painful knees that isn't too bulky and is ideally under $200 CAD each (bc my insurance works with reimbursements and maxes out at $500/ year).

If y'all have other recommendations for unreliable and generally annoying knees, especially when it comes to being able to go Christmas shopping and move between floors in my house, I'd love to hear em!

#Hypermobility #HEDS #Zebra #Braces #mobility #Mobilityaid #knee #Recommendations

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Little wins

I spent the summer dreading the winter. The big, bulky leg braces I now wear fit under none of my actual pants—sweats, sure, but I don’t like the idea of wearing them outside the house. So as the season of skirts has cooled I got a little panicked. This panic pushed me to buy a pair of baggy jeans “next size up” so EVERYTHING was bigger. Actually, a lot bigger. It was a concession to myself—at least my legs felt warmer! Then (cue angelic music) I discovered this pair of wide legged jeans. Soft. Short enough for my limbs. Pockets. Hubby approved in the “tush hugging” department ;) I’m ecstatic and needed to share a win!

#Braces #Fashion #AdaptiveClothing #iwanttofeelcute #EhlersDanlosSyndrome

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Went to the dentist! He’s making me get braces and wants to know if I’m bulimic!! I said no! He believed me!! Really scared for braces. He also drilled a cavity without giving me pain meds- ouch. Don’t recommend!! #BulimiaNervosa #Teeth #Braces


#Braces #RealPain

Adrian, my youngest son is complaining of teeth pain. He cannot eat, or afraid to eat. He tries to describe the gnawing stretching pain on his gums. It is expected when they change and screw your braces every 6 weeks but for Adrian it’s like first time all the time. Pain killers etc to help his pain. He is now ok. After buying ice cream through the wet night.
My mind was with my eldest, Alan. It’s a month before he died by suicide and I was bombarded with blame-thoughts again— He told me that he was in pain, he has headache, leg pain and teeth pain. He loves food but now he can’t eat because of his braces. I saw his text message to a friend , “the one thing that’s left that makes me happy, has been taken away, that’s eating”. That hurts. I feel like O am drowning in my grief again. I can feel the prick on my chest, again. I am fighting. My son is happier now. He is in a more peaceful place. I will focus on that.



On Thursday last week I found out it’ll get my #Braces taken off next month which is good.

I’ve also started reintroducing meat and some more dairy into my #diet and I’ve had some side effects but hopefully they’ll stop soon.

Had some other things going on too. #eyepain (dry eyes apparently) started up again and my eyedrops went AWOL (found them now), #ChestPain (random, unpredictable and short-lived) and just the normal #ChronicPain (#BackPain ) again.

Oh and also still fighting the #Depression but what’s new /shrug

Hope everyone else is okay!


Braces and footwear

Are there certain brands or styles of shoes/boots that fit ankle braces better than others? I live in the Midwest, specially Iowa so I have to prepare for the pending snow (gross). I currently wear Brooks Adrenaline (athletic shoes) and they fit my Walmart ankle brace just fine (meeting with Dr about getting professionally fit braces soon though). I know from experience that these will NOT work for winter even without a brace. I have time to shop around according to the most recent forecast but I know I’m going to need winter boots soon. Any advice is greatly appreciated as I DESPISE shopping and would like to keep my time in the store trying on footwear to a minimum.
#EhlersDanlosSyndrome #Hypermobility #Undiagnosed #Braces #Winter

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Best Brace

What’s the best brace for ankles/Achilles and knees? I hyperextend my knee all the time but it doesn’t cause pain, yet. I want to prevent an injury since I’m a delivery driver which means I’m up and down, in and out all day. Also I’m constantly rolling my ankles or feel a pulling in the back when I’m on stairs especially steep sets.
I don’t have an EDS diagnosis because I don’t meet enough criteria but they said something wasn’t right. I know you folks are the “experts” on braces since they are a daily part of your lives and know which ones work better than others. #EhlersDanlosSyndrome #Undiagnosed #spoonielife #Braces #Hypermobility

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Loving something I dreaded.

There's a vulnerable post up on my Instagram @theburdenofstars about these puppies, if you folks have any medically or physically specific questions about using them and their effect, or acquiring them, I'd love to answer!

#EDS #ehlers-danlos #ConnectiveTissueDisorder #Braces #fallenarches


The train never stops

So on Monday I had the appointment and pretty much it was X-Rays, impressions and pictures being taken (I also got these cool silver bands on my #Braces now).

On the way back I started getting stomach cramps and then after I ate I got really lightheaded and this lasted for pretty much 9 hours (I laid down for most of those 9 hours because of it). My heart rate was constantly above 100bpm. My boss told me not to come into work after previously collapsing due to it.

It’s worn off now but it comes back on and off so I did an e-consult (online consultation for the doctors) last night and heard back today and they want me to have some blood tests, an ECG and get blood pressure readings. Hoping for some answers.