Ehlers Danlos Syndrome (EDS)

[brittle pond]

i was wondering if anyone has any good compression tops/shirts or sleeves of any kind?

I use gloves but it's not enough

basically anything compression-y please ping me/let me know!!

[queen cradle]

does anyone know if theres a correlation between eds (or pots) and low blood sugar? ive struggled with low blood sugar since i was 11 (almost 5 years) and am lwky super tired of it, today it was on my last nerve and i am considering talking to my gp abt it, and maybe getting a dexcom... any tips?

[balmy lichen]

Yes! Since management of blood sugar is part of the autonomic system, and both POTs and EDS are dysautonomia, this can definitely be a factor. I have seen some people, such as chronic4you use a dexcom to watch her glucose levels and set it up to alert her at specific levels when she starts to feel side effects from blood sugar so she can drink juice or eat something sweet. I used to have low blood sugar a while ago and kept fruit leather with me if I started to feel shaky from the symptoms, and it always lasted a bit longer than a candy bar would on helping subside the symptoms.

[civic fjord]

I'm wondering if I should start testing my blood sugar when I feel gross bc honestly that might be part of why

[civic fjord]

EDS isn't dysautonomia but a lot of people with EDS also have dysautonomia

[balmy lichen]

Oh thank you! I didn’t know that

[frail saddle]

Wait how do you know ur blood sugars are low?

[rare sierra]

GG @frail saddle, you just advanced to level 1!

[heavy grove]

You can sometimes tell based on symptoms, I've had blood sugar issues my whole life and I wore a CGM last year that confirmed I was going low several times a day, so now I know what symptoms correlate with my lows

[frail saddle]

Thats interesting. Might look into it thank you

[queen cradle]

a big indicator for me is i get really shaky and feel faint, i get severe brain fog and i start babbling and talking weird (slurring words, stuttering, etc.), i also feel very irritable in general, my heart rate also increases

oh also massive headaches, and i become even more clumsy than normal lol

[frail saddle]

Thank you i think I might have a look into it i appreciate you taking the time to explain this all

[queen cradle]

no problem!

[queen cradle]

has anyone found any luck with shoulder braces?? i’ve had chronic shoulder pain for the better of 3 years now, and just recently got diagnosed with a winged scapula due to bad trapezius muscles on my left side, i also have a pinched nerve at c8 on my spine. this combined with cranial instability and coat hanger pain causes migraines and constant, chronic pain. if anyone has had similar experiences i would love to hear how you delt with it! i currently have a shoulder ice pack, use my heating pad constantly, and occasionally kt tape, alongside taking advil for pain. any advice helps!

[half night]

hey if anyone replies to this please ping me, the account above was my account because i forgot my password on this one (and since i didnt have an email attached to my acc it was terrible trying to get my acc back), but yuh im back now

[waxen zinc]

Never tried it but I'm also curious

Anyone here get chronic tendonitis? Every other day it feels like my arms or legs are going to fall off. It really hurts. And on that, any advice besides using ice packs and numbing creams?

[turbid shale]

Does anyone here have cEDS? If so, how do you deal with fragile atrophic scars? My cuts keep ripping open again and I need to find a way to shut them so they can heal again.

[half night]

I don’t have classical EDS (Haven’t been to geneticist due to waiting lists lol), I have hypermobile type, but I use butterfly stitches. You can find them in most first aid kits, just be careful if you react to adhesives

[turbid shale]

Those just tear my skin the other way, I swear I’ve tried so many things. I don’t mean to sound ungrateful but those unfortunately don’t work for me😭

[ebon willow]

Should I go to the geneticist? I cancelled the appointment I had because I feel like they may not know much about this and that I’ll just be dismissed.

A surgeon told me that getting an EDS diagnosis is not necessary, because the advice would be the same either way: avoid high-impact activities. I used to run and do similar activities, but then I started having dislocations.

[half night]

I would say yes, go to the geneticist. The advice may be the same but EDS is known for causing or being comorbid with quite a few nasty conditions, and having an official EDS diagnosis gives you easy access to tools to help manage your pain better, and even gives you easy access to someone who can help you stay active while lessening the impact on your joints

[turbid shale]

F that surgeon! Go to a geneticist and ask for an EDS evaluation. I hate when medical professionals say you shouldn’t seek out an EDS diagnosis because there’s no reason to because there’s plenty of reason to. Surgeons need to be aware of how to handle your skin, especially if you have a type of EDS that affects how your skin heals.

[deft ridge]

EDS affects every aspect of your body, its wild to say that there would be no point in getting a dx. most of the time people dont want a dx just to get cured, sometimes they want it so they can understand and take care of their health better 😭

[weary bane]

bro no one told me that eds “velvety skin” doesn’t mean “skin literally feels like velvet” ok i mean why would it (autism taking things literally strikes again ig) but according to my physical therapist i fit that category. no one told meeee

maybe the doctor i went to should have like actually explained the questions and not just said no and moved on when i was confused

[civic fjord]

wait what DOES "velvety skin" mean?

[nova apex]

very soft i think

unusually soft i suppose

but also where is the line between usual and unusual / normal and abnormal

does not make much sense to me

[civic fjord]

huh

[nova apex]

i think "velvety skin" means very soft skin. i suppose it means unusually soft skin.
but also, where is the like between usual and unusual? between normal and abnormal?
it does not make much sense to me.

sorry for the lack of punctuation i was super tired 😭

but! i think i was wrong. when i look "velvety skin" up, it shows a difference in skin coloration and texture :

[deft ridge]

im pretty sure thats hyperpigmentation

wait i might be wrong

[grave ember]

I also looked it up and what you found seems to be a condition that is characterized by areas of skin that are hyperpigmented and velvety. So in that case, the difference in skin coloration is another part of that condition, and not what is meant by the word velvety.

[nova apex]

so what does velvety skin mean then? 😭 /nm /gen

[grave ember]

I found a reddit thread discussing the same question but I think I can't link things here. The most helpful description I found was that someone said their doctor described it as "having smooth skin like a toddler's skin".

And "if people in your life are surprised by or tell you how soft your skin is"

Another description I saw was "a suede like texture"

[deft ridge]

my understanding has been thats its super soft skin

i just found the word "doughy" to describe the same feature, that might be more helpful?

[deft ridge]

(ofc it can be difficult to know what regular vs super soft even is)

[grave ember]

Yeah it's pretty subjective and not very well described in the diagnostic criteria

[deft ridge]

a symptom thats subjective to what your doctor considers normal or abnormal, how original / s

[grave ember]

Lmao

True

Gotta love having stuff where a diagnosis sort of depends on how weird a medical professional thinks you are/s