anyone have experience with legs not feeling like they "want" to walk (but they technically still can) and legs randomly giving out? (no pain involved)
has been happening for months but just occurring to me now that i should go to the doctor, so id appreciate any ideas i could discuss with them!
(i have no physical disabilities (yet?))
#Leg instability
flint harbor
native pagoda
my knee randomly gives out! it’s been doing that for months (years?) and i’ve had seemingly unrelated and random occasional joint pain in that knee since i was little. this is very unrelated but coinciding mental health issues i do feel like i can’t move or stand sometimes, but that’s less of a physical problem than my brain like forgetting that i have a body. i also don’t have any physical disabilities (and kept my weird knee thing secret from my parents for several years and it’s something i can deal with because i only occasionally fall when it happens (usually can catch myself/only stumble and not fall) so i’ve never been to the doctor for it)
lime lintelBOT
GG @native pagoda, you just advanced to level 2!
dusk sentinel
my legs feel like that sometimes, i think for me it's muscle weakness from pots and long covid. Feels like they're unable to bear your weight and might give in/collapse any moment if that's what you mean
also fatigue can sometimes feel like your limbs are just too heavy to hold for your body which might be the feeling of your legs not wanting to walk?
flint harbor
my legs feel like that sometimes, i think for me it's muscle weakness from pots ...
yes thats it! i dont have pots or long covid so i wonder whats causing it for me [rhetorical]
dusk sentinel
could be some other type of dysautonomia? so maybe you could look into that?? and i kind of stalked your roles (i'm sorry if that feels invasive i promise i have good intentions) and noticed you have adhd and autism. They're both linked to hypermobility and ehlers-danlos syndrome which i think(???) can cause similar weakness but i'm not sure i dont have those conditions
fresh pecan
anyone have experience with legs not feeling like they "want" to walk (but they ...
I have something kind of similar I have to wear knee braces or use mobility aids to go outside sometimes.
And it gers worse and worse and with other weird things too
A sport doctor refers me to a neurologist and now I wait for my appointment 😅
Hope we will both find an explanation 🤞
flint harbor
could be some other type of dysautonomia? so maybe you could look into that?? an...
stalking my roles isnt invasive dw! i chose the ones i was comfortable with publicly sharing :)) i do have some hypermobile joints but no other eds symptoms (i think?)
ill look more into dysautonomia, i do think there could be something to explore there!
flint harbor
I have something kind of similar I have to wear knee braces or use mobility aids...
ive been using crutches (when needed) since september but i downplayed my reasons for doing so to myself so it didnt occur to me to see a doctor
noticing the issues a lot more rn bc im home for the holidays and dont have my crutches with me
drowsy tapir
stalking my roles isnt invasive dw! i chose the ones i was comfortable with publ...
You can have only hypermobility or HSD (hypermobile spectrum disorder) without it being hEDS. It’s pretty common within the autism spectrum to have problem with your knees. Almost everyone with autism that I’ve met has this issue, not to downplay your struggles /lh
flint harbor
yeah ive looked into hypermobility a good bit before, i have not been / am not worried about it bc it doesnt cause any problems for me
the fact that this issue only started in the last few months, and its getting worse, is why im concerned
im having additional problems with my legs but its so difficult to describe that i couldnt include it in my initial msg lol
flint harbor
i have an appt w my gp/pcp/family doctor today 🤞
fresh pecan
🤞🤞
flint harbor
didnt go well :(
lime lintelBOT
GG @flint harbor, you just advanced to level 4!
fresh pecan
didnt go well :(
Oh I'm sorry for you 😥
flint harbor
she thinks its bc of autism / mental health condition (its not)
she said i should go to therapy for the first part of the problem, and didnt really suggest a next-step for my legs giving out
proud of myself for voicing that i didnt agree with her assessment tho :) it takes a lot to tell a doctor that you think theyre wrong
fresh pecan
proud of myself for voicing that i didnt agree with her assessment tho :) it tak...
Proud of you 
She was better after or not at all ?
flint harbor
not at all
she wasnt mean or anything i just felt dismissed
the doctor i got wasnt actually my gp, so it was her first time meeting me, i know my brain and body so well and she doesnt know it at all
~
just remembered that she asked me what made me go to therapy 😭 girl i promise that what happened when i was 14 isnt related to 20 y/o me not being able to walkkk
why are doctors so rarely cool :((
fresh pecan
You will take another appointment with your actual gp ?
flint harbor
yeah i think so
when i feel mentally up to it
appt today really kicked my confidence :(
fresh pecan
Yeah I understand I'm sorry for you and send you a lot of strenght and spoons 🥄🥄
dusk sentinel
ahh i'm so sorry💛 you can always message me if you need someone to talk to
do you know when your gp will be back? (and are they a good doctor in the first place)
also just want you to know you do not need a diagnosis to use a mobility aid (if you feel that could help you), i just got a cane like 2 weeks ago and it has been so helpful in managing my leg instabillity
flint harbor
do you know when your gp will be back? (and are they a good doctor in the first ...
im never sick so ive only met him once but he was very nice
flint harbor
also just want you to know you do not need a diagnosis to use a mobility aid (if...
i have crutches! the doctor i saw yesterday told me to stop using them because theyd be bad for me?
that part bothered me too. felt invalidated for my mobility aid use
dusk sentinel
im never sick so ive only met him once but he was very nice
ahh hopefully he will be understanding about this when you feel ready to try again
lime lintelBOT
GG @dusk sentinel, you just advanced to level 7!
dusk sentinel
i have crutches! the doctor i saw yesterday told me to stop using them because t...
what thats weird why would using crutches be bad for you? it shouldn't be that hard for a doctor to understand that if a mobility aid helps then it's a good thing to use one right??
drowsy tapir
what thats weird why would using crutches be bad for you? it shouldn't be that h...
If you use mobility aids over a long time* it can hurt your body. The muscles becomes weaker etc. (I don’t know all the details about it, but that’s what I’ve heard) /info
*months
dusk sentinel
i mean fair but won't they get even weaker when you are completely unable to walk? (idk the tag things but i dont mean this in in attacking way)
drowsy tapir
I don’t know. I’m not a doctor /lh
dusk sentinel
hahah true
drowsy tapir
But I would guess no.
If you don’t have any muscles to begin with, due to not being able to walk, then I assume it can’t get worse.
However I don’t think that was the case here.
Also, if mobility aids help you move more than you would have done otherwise, I’m all for it.
flint harbor
yeah the concern would be that my muscles would weaken, or that the crutches would mess with my gait (the way i walk)
but i was only using the crutches part-time (when necessary) and my gait was unaffected
bold lodge
Also afaik the usual way would be to find a mobility aid that has the appropriate amount of support and least amount of disadvantages in your specific situation. Which a doctor should help you with. And then there's also the possibility to get a physiotherapist onboard who can teach you how to best use your mobility aid in a way that doesn't mess up your gait, joints or back.
Sure, using a "wrong" (as in not suitable for your situation) mobility aid, or using the right one in the wrong way, can be a health risk. But not using one when you need one isn't a solution either, and health care professionals are supposed to help you figure out the best way for your health.
flint harbor
i use crutches for several reasons, firstly bc my "comfortable" standing posture is similar to 4th/5th position in ballet, and thats really not good for any of my joints long-term
im quite perplexed as to why the doctor didnt refer me to anyone. like she suggested therapy but didnt say what kind would be best, or refer me to a therapist/give me resources to find one
my mother tells me that shes "the best" doctor in that medical practice but i have to admit that i struggle to agree
it was such a disheartening experience :(
bold lodge
Yeah that really sounds like a bad experience. I'm sorry you went through that. /sincere
In case you need the encouragement: it's always okay to ask questions like the once you just asked at a doctor's appointment (e.g. "can you refer me to someone else who can help?" & "can give me further resources?" etc)
flint harbor
yesterday was my birthday party, i kept dropping down bc my legs didnt want to stand again. my knees hurt a lil today and i think its bc of yesterday
unfortunately ive decided not to go to my gp, because i return to study-abroad next week so theres no use trying to get neurology/psychiatry appts organised
i will not be getting rid of my crutches: i had self doubt come up again after seeing that doctor, but the crutches wouldve been so helpful yesterday. looking forward to having them available to me
flint harbor
so, i thought this would be happening in like, march
but turns out my parents are visiting me in my study-abroad-city this weekend (they arrived on the 30th)
so im gonna do the scary thing. and tell them that i have crutches
and why i have them
and that ill be bringing them back on the plane with me
i thought id have at least a few weeks more to mentally prepare but i suppose this is it
fresh pecan
I wish you a lot of luck/strenght ✨️✨️
You will get it ✨️
flint harbor
thank you :))
im hoping to do it in a public setting
like a café, crêperie or restaurant
but we'll see
fresh pecan
Question/advice :
||would it be easier if you send them a message like : Oh btw I want to warn you I will be using crutches when we will meet indeed for "insert for how much time you have issues" I am experiencing...... and using my crutches enable me to have a better mobility/"anything that it helped you with"||
flint harbor
my parents will want to know why im using them
and they hate having long conversations through text
so then itll turn into a phone call
theres also quite a bit to explain
i keep my life quite private from them so they are missing a lot of details
i dont feel like i owe them an explanation. im more-so keeping them off my back (and by telling them, im hoping theyll seek to understand my experience)
if i didnt explain properly they would just invalidate me, so this is how i control the situation
fresh pecan
Yeah okay I see. Indeed complicated situation.
Indeed like you said a public place can be better as they will have to contain themself.
If I understood well you see them tomorrow/today. I wish you a lot of strenght ✨️🤍
flint harbor
it went well?
my mom had a few ignorant things to say
like "are you sure youre not just focusing too much on your legs" as tho simply by thinking i have given myself my problems??
flint harbor
this is more knee pain than leg instability
but why all of a sudden (in the past 6 months) have i started experiencing knee pain
after ive spent a few hours standing/walking
this never used to happen to me but now it is
could it be because i dont exercise (outside of walking everywhere)?
i went to a carnaval evening tonight, we were there 9pm until midnight
we even spent some of that time sitting down too
and yet. my knees are sore
actually i was on my feet for 2.5 hrs earlier in the day so maybe its that
im just confused as to why my previously unproblematic body is all messed up all of a sudden :(
drowsy tapir
could it be because i dont exercise (outside of walking everywhere)?
Or can it be because you’re walking everywhere?
Is it only soreness or do you have luxations as well?
Is it only your knee that hurts / get sore or is it your whole body?
hexed ingot
Is it only soreness or do you have luxations as well?
Is it only your knee tha...
Is luxations different to subluxation?
bold lodge
Subluxation is when the joint doesn't go fully out, luxation is when it pops out all the way I think
So subluxation is kind of a "smaller" version of luxation
flint harbor
Is it only soreness or do you have luxations as well?
Is it only your knee tha...
its only soreness, and no other part of my body is sore
flint harbor
Or can it be because you’re walking everywhere?
by "walking everywhere" i mean that i walk to go to the places i need to go, but this doesnt take me very long. im not usually walking for hours and hours. i stay at home a lot
drowsy tapir
its only soreness, and no other part of my body is sore
Alright. If you have instabile joints and walk a lot it can cause soreness through out the body. But I guess that’s not the case here.
flint harbor
legs dont want to work again!
i will be sitting down, and it feels like if i stand i will fall.
then i stand, and my legs are very tense, as though by being very tense they will stop me from falling. and then after a while, im able to walk/stand and its fine
how can feel unstable yet actually be stable, i dont understand
also my left leg is especially bad rn for being tense a lot, causing me to walk on the outside of my foot, and to walk with my knee turned in
technically i can straighten it out and walk normally but it takes a lot of effort to relax the muscles and then keep them that way
bold lodge
how can feel unstable yet actually be stable, i dont understand
This is a question I have been asking myself too bc my legs will also often feel wobbly/unstable but I never actually fall or anything
I'm still not sure😅
fresh pecan
Agree too 😅
And sending you positive energy Never. I hope it will return to your "normal" state soon ✨️✨️🫂
Does things like heat could help the muscle to relax ?
flint harbor
i dont think so :(
ive been using 1 crutch over the last few days to accommodate my left leg
honestly i dont even need to use it
trying not to feel invalidated for that reason
its easier to use one bc i can feel less insecure about walking a little weird, sitting down on the metro and using elevators
makes whatevers going on with me visible instead of invisible
fresh pecan
Like you often told me, if it helps you use it. It doesn’t matter if you can walk without it. If it maked it easier, less painfull or if it helps you in any way Use It ✨️
fresh pecan
its easier to use one bc i can feel less insecure about walking a little weird, ...
I completly feel that
flint harbor
not related to my legs but could be similar to whats going on with them
2 of my fingers are "stuck" curled up
image isnt upsetting i just wanted to spoiler it. its just a photo of my hand lol
stuck is in quotations because they technically can move
but they dont want to
this happened yesterday too
this has happened before, sometimes it can be my whole hand. has never happened for this long tho
fresh pecan
2 of my fingers are "stuck" curled up
Like me !
All my fingers/hands were curled up too but I was still able to move thel. But they returned everytime in the curled up position
flint harbor
yes!!
fresh pecan
And at some point it just returned to normal
flint harbor
for example when i went to wash my hands, i forced them open to get handwash on all parts of my hand, but by the time i went to use it to put handwash on my other hand, my fingers were curled up again
is now affecting my middle finger, only my index is free now
fresh pecan
for example when i went to wash my hands, i forced them open to get handwash on ...
Yeah I completly see
Does your hand /fingers also feel weird like a bit weak or I don’t know?
flint harbor
they dont feel weak
fresh pecan
They feel normal ?
flint harbor
yes
fresh pecan
Oh interesting
But indeed you will have a lot of things to bring up to your doctor once you return to Irlande.
And you even have pictures 😁
flint harbor
haha yes
ive been filming again over the last few days
and i talk while i film
i explain whats going on, what things feel like
fresh pecan
Ohhh nice
flint harbor
day 3 of this
ive taped the 2 curled up fingers to my middle finger in an attempt to stop them from curling up
also bc i want to see what it feels like for them to not be curled up (whether itll stay feeling uncomfortable, or stop after a while)
update: took the tape off bc my whole hand was really unhappy that my fingers couldnt curl up
these msgs will be helpful when i see my doctor
fresh pecan
Yeah
Sending support ✨️ and I send a message to your fingers "return in normal position 👀" /hj 😅😂
flint harbor
thank you <3
tiny crescent
I have add a problem with my legs feeling like lead to the point where I can’t move them. I am still in the diagnosis process. It’s really frustrating because you never know when it could happen so you just go about your day and then end up tripping over your own legs when trying to do a chore or task at school or work.
flint harbor
was using 1 crutch today
i was using 1 2 days ago and then none yesterday
yesterday i kept almost falling on the floor so the crutch was back today
i was walking fairly normal just now omw home so i swapped the crutch to support my right leg instead
and then my left leg started acting all weird again
so i swapped back lol
fresh pecan
😅😂
Does 2 crutches could provide you more help on bad days ?
flint harbor
yeah, i didnt think i needed my 2nd so i left it at home but then. regretted that
i learned at manual-handling training that youre supposed to "stack" your joints:
hip above knee, knee above ankle
for some reason its very difficult for me to stand like that
so yesterday with 1 crutch + the way i hold myself, my right hip (unsupported leg) was taking more weight than it should have been
today i am using 2 crutches and it is better
my left foot is annoying me. why does it not want to be normal. why does it tense and insist on being in a weird position
its been like 6+ days of this, i dont like it
fresh pecan
i learned at manual-handling training that youre supposed to "stack" your joints...
It seems hard indeed
fresh pecan
its been like 6+ days of this, i dont like it
Does things like heat have helped a bit ?
flint harbor
when i showered and had to wash my hair, my fingers stopped curling up for a bit
eventually went back
not sure what my foot did
applying heat doesnt help
my leg doesnt tense and stay tense
its a pattern:
tense - relax - tense - relax - tense
fresh pecan
Yeah I see🥲
flint harbor
like clenching and unclenching your fist
i can relax part of my foot, but another part will tense (as though its trying to counteract the relaxing)
fresh pecan
Indeed that's really weird
Hopefully your doctor will listen to you and will help you to get answers and help
flint harbor
i hope so :)
flint harbor
havent texted in here in a while
the update is that i had a physio appt, next one is in a few days
also my family are totally cool with me using crutches, which was super unexpected
my mom saw me when i was with my friend up town today
and when my moms friend asked why i had crutches, she just told her i had mobility issues
im so glad theyre accepting bc it would be way more difficult without their support
flint harbor
still waiting to see my gp
my mother wanted me to see the physio first
gp appt is in early june
flint harbor
update!
just saw my gp
i love him hes the best
i told him about my leg problems and he immediately started testing my joints for hypermobility
he told me he thinks my problems are related to being neurodivergent
and he + my physio are going to refer me to someone who might be more specialised and therefore more equipped to help me
fresh pecan
Nice 😁✨️🎉
fresh pecan
he told me he thinks my problems are related to being neurodivergent
Like a comorbidity ?
flint harbor
yes
fresh pecan
Cross fingers you will have an appointment soon with the specialist ✨️🤞🤞
flint harbor
update on my 2nd physio appt
had it today, she was lovely
she explained that my problems probably are due to a functional neurological disorder
note: a functional neurological disorder. not FND
but that hopefully if the mostly-paediatric physio shes contacted takes young adults, that physio will be able to help me :)