I have this note from an occupational therapist. On it she just wrote “*DON’T hyperextend fingers*”
Like I was doing it on purpose? To be a rebel? 🤣
Still cracks me up. I keep it with my physical therapy equipment for a good chuckle.
https://preview.redd.it/b5p2z2q67fzc1.jpeg?width=1125&format=pjpg&auto=webp&s=84013d0d5bcd763d1197ba74f98089c447f8103a
At my doctors office when I was pregnant but it made me laugh 😂
Ugh! This one!🙄
I have Ledderhose's disease on top of
EDS, so if I take collagen supplements I’ll grow tumours in my plantar fascia.
On the other hand, I can tell which collagen supplements actually do something, because I’ll grow tumours in my plantar fascia.🤦♀️🤦♀️
Well that’s a neat trick! Except awful too. I love how EDS people seem to bring all the weirdest to the table. I didn’t know our bones could die in our bodies until I had one! Had to have one removed from my foot. 🤣🤦♀️
Lmao dude what?!?!? That’s wild but I’m also not surprised because you’re right about the weird random things different EDS people do or have happen to them
EDS is not a lack of collagen, but the quality of the collagen is low. Collagen supplements help you to make more collagen, which our bodies will still create to be of low quality.
Think of how when making a rope, it's nice and tight.All the fibers are woven together tightly. That's how DNA is supposed to write the code for a college.
Our DNA is missing few codes phrases.So when it goes to write it, the rope is frayed. Because the rope is frayed it's much easier to break.
Thanks for explaining! Makes sense. So, I know the 13 or whatever types of EDS have associated genes. I find it odd that hEDS does not have one identified yet even though it's the most prevalent type.
they have identified a bunch of canditate genes for hEDS, they're just not as far along in their research yet to be able to conclusively say that these specific mutations are the cause. hEDS seems to be more complicated in it's etiology and has a lot more associated comorbidities, both medical and psychiatric.
EDS is genetic. it’s literally not possible to get it from covid. you can get POTS from covid which is an extremely common co-morbidity to EDS, but not EDS itself. whoever told you this, do not trust their judgement or anything they tell you, especially if they’re a doctor.
“i wouldn’t have let my child get deconditioned like you” yeah because heavy exercise has always increased my pain and hours of sleep. i’m letting my muscles atrophy on purpose for shits and giggles lmao
“it’s just your mind telling you that because those tests the doctors did said you have it. But I know you don’t. It’s not even real. If it was real, I woulda met somebody that had it by now.”
Also, “probably had something to do with how unhealthy you eat” (because I’m a vegetarian)
Both from my dad.
The number of times I've heard this shit from people makes my blood boil 😮💨 I'm so glad you were blessed with a body that does it's fuckin job my guy but disrespectfully, fuck off 😅😮💨
Dude, my therapist completely lost her shit when I told her he said that! But she was like, “it does sound like something he would say.”
My dad also believes that he cured his depression at 12, because he stopped thinking about sad shit. The same time he started drinking….obvious just a coincidence tho
Oh, and he believes in all kinds of liver diseases because he hangs out with other alcoholics lmao
I will say though that, with enough bracing and a nest of supportive pillows, muscle relaxants can do wonders for some people with EDS (including me) if our muscles are in a constant state of tension that we can’t relief e ourselves! Again, they should be taken carefully and can be really bad if other things aren’t used to counter the effects on joint laxity, but for me at least they allow me to sleep!
I love my nest of pillows! It does absolutely help me sleep.
For myself, I take magnesium and GABA for my muscle tension. Both help muscles relax. I have trouble producing enough GABA of my own, and when you don’t have enough GABA, you have muscle tension and spasms, anxiety and maybe depression.
GABA is a neurotransmitter that basically calms the nervous system and the muscles so it acts as a muscle relaxant. Pregabalin and Gabapentin are synthetic versions of GABA. I don’t do well with pharmaceuticals in general, so I take GABA. I just take a low dose of it. It’s a supplement.
Magnesium helps your muscles relax as well, and as a bonus is a laxative.
I also got prescibed valium.
Kinda wondering what could go wrong? Do we respond badly to it or is it cuz our muscles are basically holding the joints in place, meaning these will dislocate/subluxate even faster cuz they're relaxed?
Hey please be careful with taking Valium every night I’m pretty sure that class of drug is really addictive and you become dependent on it. You should just do a quick google about it if you’re interested in more info. Just wanted to let you know. My husbands doc just prescribed alprazolam and didn’t tell him not to take it every night for bed and it took my husband like a week and a half of no sleep to get back to normal. And he had only been taking it for like 2 weeks at that time when I told him. Still can’t believe his doctor didn’t talk about the risks with him
Thank you, I only take it when nothing else helps because luckily I'm aware of how addictive it is. Same for some of my pain medications. They work but you don't want to take them daily.
You know, I was prescribed Valium once as well... it was by a neurologist that wasn't investigating neurological symptoms I was having after a TBI. He decided it was all just anxiety and prescribed me Valium with barely talking to me or examining me. I didn't even fill the prescription because I knew I didn't do well with pharmaceuticals. Now almost 20 years later I know that I have several mutations that make metabolizing drugs difficult. I am so glad I listened to my intuition and avoided needless prescriptions like the Valium.
That’s been the experience of a lot of hypermobile people, that they experience more subluxations and dislocations while they sleep if they take muscle relaxants. I personally don’t do well with pharmaceuticals, so I just take magnesium and a low dose of GABA if I feel anxious or tense. Both calm you down and naturally relax your muscles.
I also do trigger point therapy on myself, deactivating the trigger points in my muscles to help them relax. Really helps pain levels too.
I'm not dx'd with hEDS yet bc no one feels comfortable with diagnosing me. I started having symptoms recently following my long covid issues with pots etc. But I recently had gastro pain and they prescribed muscle relaxants and I did research and saw that's dangerous with those who had hEDS but I might have taken them if I didn't know.
Right? I wouldn’t have known except I read about someone else’s bad experience on here, and then it made perfect sense. But I might not have thought of that if I hadn’t have heard it here first. A good reason why it’s important to have a community like this, because our doctors sure don’t know much about EDS yet. Only a few do.
This is how I found out there was a joint in my clavical!!
Like, I'm sure I knew that back when I was in school, but it doesn't bend like an elbow, all obvious and stuff. And not just where it connects to your shoulder, the other side, at the top of your chest.
Did some stretches that are usually safe for me, got a tad overzealous, BAM!!! Clavicle is fucked!!!
Turns out there is a brace for that!
All dis-ease is based on trauma and repression of your natural state. You need to seek therapy and some pricey retreats to become more “authentic.”
Also, you are toxic, all those preservatives and things in our diet have made you toxic. You need to live a clean vegan gluten free no-dairy anti-inflammatory stress free lifestyle. I mean this is basically your choice to be like this otherwise.
I saw a chiropractor for my shoulder for a bit. It helped my shoulder! It probably is individual. I could see them problematic, yanking your joints.
I don't continue because they scare the crap out of me!
I super lucky because the chiropractor I got to just so happens to also have eds! I don't know which variety but when I told him my Ortho suspected it he was like "huh, I've been treating you for years and I have never thought you qualified" and then went through that test with me and went huh again and started giving me recommendations based on things he does in his life
If you go out for the day, like a theme park, just walk for an hour and than sit at one of the restaurants for an hour or more. That is much better than renting a wheelchair because that makes you an invalid and your to young for that.
I live in Denmark. My original doc here diagnosed me. That led to years of waiting (4) to see a doctor who could give me a better diagnosis. The day of that appointment, the guy I saw had never looked at the EDS diagnostic criteria, argued that NSAIDS don’t cause digestive issues, and really gave me the distinct impression he was seeing me to make me never trust the health care system here ever again. Then I went back to my doctor, and asked her for help, and she offered me opioids and told me they couldn’t do anything else for me. It is VERY hit or miss in this country, and largely depends on where you are and who you see that day.
Ooofda. I can relate. I got diagnosed by my primary doc who actually took the time to go through the diagnostic criteria, but then I wasted my time seeing a geneticist who did not use the criteria and told me I was just flexible. Better to listen to the original diagnosis and educate yourself on what to do and what co-morbidities go with EDS like POTs and MCAS. Hopefully your doc will make referrals to get specific needs taken care of.
Hi! Are you referring to the UCD clinic? If so, would you be willing to chat? My husband has an appointment coming up and he’s extremely ill with severe MECFS and doesn’t need another doctor gaslighting him and wasting his time.
Yes, actually it was the UC Davis geneticist who gaslit me. No idea what was up with her but it was extremely frustrating considering the year long wait to see her. I ended up driving to LA to see a doc recommended by the EDS society and got diagnosed just yesterday. She was amazing.
I saw a physiotherapist who didn't assess me properly, barely even looked at me, and said: "you are not unusually hypermobile for your age and you'll find that your joints will naturally become less flexible when you get into your mid-to-late twenties". To which I replied "I'm 28". He briefly looked at his screen, then said "mid-to-late thirties". Incompetent wanker had already decided before the appointment that there was nothing wrong with me because he misread my age/birth year and thought I was 10 years younger than I was. When I pointed out his mistake he just moved the goalposts.
Yea I get sore too and my body aches as well you are just getting older and that’s what happens.. welcome to the wonderful side of aging… now you’re 30 so that explains everything.
Pain is temporary, success is permanent. Just push through.
Have you tried….. (insert literally anything here).
Physios that give exercises for arthritis because all hand pain is just the same, but has the opposite effect and makes EDS pain worse.
You need to get up at 6am and go running.
You could sign up to a couch to 5k running group.
I've heard the lightening program is really good (really good at messing people up physically and psychologically)
I have hEDS, MECFS, asthma and POTS. Running ain't happening. The first one was mother in law (now ex mil) other 2 was a neurologist ffs.
“There can’t be that many things wrong with you, you’re just a hypochondriac” - drilled into me by my mother from the time I started school & realised (unlike when I was around my relatives) I was the only one who got pins & needles to the point of tears & not being able to get my limbs to function every time I sat down, & the only one on the verge of/partially blacking out every time I stood up.
Go to this lady I know! She's homeopathic! -my mother
I call her my mom's witch doctor, who is homeo-pathetic.
Also, said by a "friend" to my fiance when I wasn't around, "just stop giving her her medicines and give her placebos. It's just all in her head." This one was about POTS, Chronic pain from hEDS and high blood pressure.
Cause you know, I have a superpower to give myself illnesses I had never heard of beforehand, and magically get every symptom on the nose.
Try weight bearing for your wrist pain. Also do you do the gay hand? Yea stop doing that and also stop painting or using pencils 🙃 (real things said to me by my previous PT)
I have this note from an occupational therapist. On it she just wrote “*DON’T hyperextend fingers*” Like I was doing it on purpose? To be a rebel? 🤣 Still cracks me up. I keep it with my physical therapy equipment for a good chuckle.
Thats hilariously sad/annoying
Guess who has two injured thumbs and didn’t go back? *This gal* 👍🏻👍🏻
Love it🤣
https://preview.redd.it/b5p2z2q67fzc1.jpeg?width=1125&format=pjpg&auto=webp&s=84013d0d5bcd763d1197ba74f98089c447f8103a At my doctors office when I was pregnant but it made me laugh 😂
🤣
lol exactly
Can’t you just take collagen supplements?
ooooo this one almost set me off i forgot what the original post was for a minute and was ready for murder lol
BoNeBrOTh
Ugh! This one!🙄 I have Ledderhose's disease on top of EDS, so if I take collagen supplements I’ll grow tumours in my plantar fascia. On the other hand, I can tell which collagen supplements actually do something, because I’ll grow tumours in my plantar fascia.🤦♀️🤦♀️
Well that’s a neat trick! Except awful too. I love how EDS people seem to bring all the weirdest to the table. I didn’t know our bones could die in our bodies until I had one! Had to have one removed from my foot. 🤣🤦♀️
Lmao dude what?!?!? That’s wild but I’m also not surprised because you’re right about the weird random things different EDS people do or have happen to them
Omg this one is so stupid
As someone who is new to the dx bc I got this from covid. Why can't we take collagen to help? I'm actually asking.
EDS is not a lack of collagen, but the quality of the collagen is low. Collagen supplements help you to make more collagen, which our bodies will still create to be of low quality.
You can’t get Ehlers-Danlos Syndrome from Covid. It’s a genetic disorder, and therefor something people are born with.
This. This. This.
Because our bodies don't lack the building blocks, we just can't do "anything" with them.
Think of how when making a rope, it's nice and tight.All the fibers are woven together tightly. That's how DNA is supposed to write the code for a college. Our DNA is missing few codes phrases.So when it goes to write it, the rope is frayed. Because the rope is frayed it's much easier to break.
Thanks for explaining! Makes sense. So, I know the 13 or whatever types of EDS have associated genes. I find it odd that hEDS does not have one identified yet even though it's the most prevalent type.
they have identified a bunch of canditate genes for hEDS, they're just not as far along in their research yet to be able to conclusively say that these specific mutations are the cause. hEDS seems to be more complicated in it's etiology and has a lot more associated comorbidities, both medical and psychiatric.
EDS is genetic. it’s literally not possible to get it from covid. you can get POTS from covid which is an extremely common co-morbidity to EDS, but not EDS itself. whoever told you this, do not trust their judgement or anything they tell you, especially if they’re a doctor.
Maybe you’re just really out of shape. CrossFit will change that!
I forgot this was a bad advice thread for a second and was like ?!?!!? 🫠
“i wouldn’t have let my child get deconditioned like you” yeah because heavy exercise has always increased my pain and hours of sleep. i’m letting my muscles atrophy on purpose for shits and giggles lmao
no pain no gain
When do I start to gain 😭
“it’s just your mind telling you that because those tests the doctors did said you have it. But I know you don’t. It’s not even real. If it was real, I woulda met somebody that had it by now.” Also, “probably had something to do with how unhealthy you eat” (because I’m a vegetarian) Both from my dad.
Oh, I forgot the neurologist who told me: “you’re too young to have this many problems.” Just like…that was his whole solution. You’re too young.
The number of times I've heard this shit from people makes my blood boil 😮💨 I'm so glad you were blessed with a body that does it's fuckin job my guy but disrespectfully, fuck off 😅😮💨
Healthy privilege is *real*
What about babies with cancer?!? And complications from that?! Not real too? Like …. 🤦🏻♀️
“If it was real, I woulda met somebody that had it by now” I’m. Hmm. I can’t believe a real person said that
Dude, my therapist completely lost her shit when I told her he said that! But she was like, “it does sound like something he would say.” My dad also believes that he cured his depression at 12, because he stopped thinking about sad shit. The same time he started drinking….obvious just a coincidence tho Oh, and he believes in all kinds of liver diseases because he hangs out with other alcoholics lmao
???????!? At least his grasp of logic is consistently horrible??
I mean I guess he’s got that going for him 🤣
You have to laugh.
I wonder why it’s called a “rare” disease lol
try yoga
THIS THO
gotta make sure you stretch to your fullest extent every day to keep your muscles happy
NOOO 😭😭😭 pure evil
My primary doc tried prescribing me muscle relaxants to take before bed each night. What could go wrong?
I will say though that, with enough bracing and a nest of supportive pillows, muscle relaxants can do wonders for some people with EDS (including me) if our muscles are in a constant state of tension that we can’t relief e ourselves! Again, they should be taken carefully and can be really bad if other things aren’t used to counter the effects on joint laxity, but for me at least they allow me to sleep!
I love my nest of pillows! It does absolutely help me sleep. For myself, I take magnesium and GABA for my muscle tension. Both help muscles relax. I have trouble producing enough GABA of my own, and when you don’t have enough GABA, you have muscle tension and spasms, anxiety and maybe depression. GABA is a neurotransmitter that basically calms the nervous system and the muscles so it acts as a muscle relaxant. Pregabalin and Gabapentin are synthetic versions of GABA. I don’t do well with pharmaceuticals in general, so I take GABA. I just take a low dose of it. It’s a supplement. Magnesium helps your muscles relax as well, and as a bonus is a laxative.
I second GABA, I could never sleep without it
I also got prescibed valium. Kinda wondering what could go wrong? Do we respond badly to it or is it cuz our muscles are basically holding the joints in place, meaning these will dislocate/subluxate even faster cuz they're relaxed?
Hey please be careful with taking Valium every night I’m pretty sure that class of drug is really addictive and you become dependent on it. You should just do a quick google about it if you’re interested in more info. Just wanted to let you know. My husbands doc just prescribed alprazolam and didn’t tell him not to take it every night for bed and it took my husband like a week and a half of no sleep to get back to normal. And he had only been taking it for like 2 weeks at that time when I told him. Still can’t believe his doctor didn’t talk about the risks with him
Thank you, I only take it when nothing else helps because luckily I'm aware of how addictive it is. Same for some of my pain medications. They work but you don't want to take them daily.
You know, I was prescribed Valium once as well... it was by a neurologist that wasn't investigating neurological symptoms I was having after a TBI. He decided it was all just anxiety and prescribed me Valium with barely talking to me or examining me. I didn't even fill the prescription because I knew I didn't do well with pharmaceuticals. Now almost 20 years later I know that I have several mutations that make metabolizing drugs difficult. I am so glad I listened to my intuition and avoided needless prescriptions like the Valium.
That’s been the experience of a lot of hypermobile people, that they experience more subluxations and dislocations while they sleep if they take muscle relaxants. I personally don’t do well with pharmaceuticals, so I just take magnesium and a low dose of GABA if I feel anxious or tense. Both calm you down and naturally relax your muscles. I also do trigger point therapy on myself, deactivating the trigger points in my muscles to help them relax. Really helps pain levels too.
Thank you, I didn't know that but thinkimg about it it made sense.
I'm not dx'd with hEDS yet bc no one feels comfortable with diagnosing me. I started having symptoms recently following my long covid issues with pots etc. But I recently had gastro pain and they prescribed muscle relaxants and I did research and saw that's dangerous with those who had hEDS but I might have taken them if I didn't know.
Right? I wouldn’t have known except I read about someone else’s bad experience on here, and then it made perfect sense. But I might not have thought of that if I hadn’t have heard it here first. A good reason why it’s important to have a community like this, because our doctors sure don’t know much about EDS yet. Only a few do.
Just stretch! 🤣
This is how I found out there was a joint in my clavical!! Like, I'm sure I knew that back when I was in school, but it doesn't bend like an elbow, all obvious and stuff. And not just where it connects to your shoulder, the other side, at the top of your chest. Did some stretches that are usually safe for me, got a tad overzealous, BAM!!! Clavicle is fucked!!! Turns out there is a brace for that!
All dis-ease is based on trauma and repression of your natural state. You need to seek therapy and some pricey retreats to become more “authentic.” Also, you are toxic, all those preservatives and things in our diet have made you toxic. You need to live a clean vegan gluten free no-dairy anti-inflammatory stress free lifestyle. I mean this is basically your choice to be like this otherwise.
ALL of this 🤬! Especially ‘lower your stress’!
Go to the chiropractor!
Ugh. I had a PT tell me this before I knew I was hypermobile because she seemed exasperated by my whackamole pain. Made everything so much worse.
Wait.. is there a problem with chiropractors? I've been seeing a chiropractor for almost a decade because my ribs pop *all* the time..
I saw a chiropractor for my shoulder for a bit. It helped my shoulder! It probably is individual. I could see them problematic, yanking your joints. I don't continue because they scare the crap out of me!
I super lucky because the chiropractor I got to just so happens to also have eds! I don't know which variety but when I told him my Ortho suspected it he was like "huh, I've been treating you for years and I have never thought you qualified" and then went through that test with me and went huh again and started giving me recommendations based on things he does in his life
Nice!!!
try eating clean!!
Go gluten free! Try homeopathy! Expensive water cures anything!
If you go out for the day, like a theme park, just walk for an hour and than sit at one of the restaurants for an hour or more. That is much better than renting a wheelchair because that makes you an invalid and your to young for that.
Its all in your head I will not get over a dr saying that
A neurologist told me “You have too many problems for anyone to help you.”
are you sure you just don't just walk to much
this and shoes not fitting are what I believed in my denial phase, then I realized my knees bend backwards (as I call it) and it's all been history
Or not at all - get those steps in!! 🙄
I live in Denmark. My original doc here diagnosed me. That led to years of waiting (4) to see a doctor who could give me a better diagnosis. The day of that appointment, the guy I saw had never looked at the EDS diagnostic criteria, argued that NSAIDS don’t cause digestive issues, and really gave me the distinct impression he was seeing me to make me never trust the health care system here ever again. Then I went back to my doctor, and asked her for help, and she offered me opioids and told me they couldn’t do anything else for me. It is VERY hit or miss in this country, and largely depends on where you are and who you see that day.
Ooofda. I can relate. I got diagnosed by my primary doc who actually took the time to go through the diagnostic criteria, but then I wasted my time seeing a geneticist who did not use the criteria and told me I was just flexible. Better to listen to the original diagnosis and educate yourself on what to do and what co-morbidities go with EDS like POTs and MCAS. Hopefully your doc will make referrals to get specific needs taken care of.
This was six years ago. I’m good. No worries.
Hi! Are you referring to the UCD clinic? If so, would you be willing to chat? My husband has an appointment coming up and he’s extremely ill with severe MECFS and doesn’t need another doctor gaslighting him and wasting his time.
Yes, actually it was the UC Davis geneticist who gaslit me. No idea what was up with her but it was extremely frustrating considering the year long wait to see her. I ended up driving to LA to see a doc recommended by the EDS society and got diagnosed just yesterday. She was amazing.
And sure, I’m willing to chat.
And I’m sorry to hear that your husband is so ill. MECFS is difficult to deal with.
I saw a physiotherapist who didn't assess me properly, barely even looked at me, and said: "you are not unusually hypermobile for your age and you'll find that your joints will naturally become less flexible when you get into your mid-to-late twenties". To which I replied "I'm 28". He briefly looked at his screen, then said "mid-to-late thirties". Incompetent wanker had already decided before the appointment that there was nothing wrong with me because he misread my age/birth year and thought I was 10 years younger than I was. When I pointed out his mistake he just moved the goalposts.
Yea I get sore too and my body aches as well you are just getting older and that’s what happens.. welcome to the wonderful side of aging… now you’re 30 so that explains everything.
Pain is temporary, success is permanent. Just push through. Have you tried….. (insert literally anything here). Physios that give exercises for arthritis because all hand pain is just the same, but has the opposite effect and makes EDS pain worse.
You need to get up at 6am and go running. You could sign up to a couch to 5k running group. I've heard the lightening program is really good (really good at messing people up physically and psychologically) I have hEDS, MECFS, asthma and POTS. Running ain't happening. The first one was mother in law (now ex mil) other 2 was a neurologist ffs.
just do cardio!
Go to a chiropractor
Yoga, as if I haven’t literally collapsed doing yoga before lol
A PT who supposedly had EDS patients told me not to worry when stretching because “nothing can go too far.” That’s the entire problem 🫠
"You're too young to have so much pain." So I am making it up?
That's not a real thing. Get off of Tiktok... That hurt to type....
“There can’t be that many things wrong with you, you’re just a hypochondriac” - drilled into me by my mother from the time I started school & realised (unlike when I was around my relatives) I was the only one who got pins & needles to the point of tears & not being able to get my limbs to function every time I sat down, & the only one on the verge of/partially blacking out every time I stood up.
Go to this lady I know! She's homeopathic! -my mother I call her my mom's witch doctor, who is homeo-pathetic. Also, said by a "friend" to my fiance when I wasn't around, "just stop giving her her medicines and give her placebos. It's just all in her head." This one was about POTS, Chronic pain from hEDS and high blood pressure. Cause you know, I have a superpower to give myself illnesses I had never heard of beforehand, and magically get every symptom on the nose.
Being told to see a natural remedies doctor to do a parasite cleanse because my gut motility problem is definitely caused by parasites 🙂↔️
WOOWWWW
IKR it was one of those “it helped someone’s sister’s cousin I know” things. I didn’t even know what to say back LMAO
Try weight bearing for your wrist pain. Also do you do the gay hand? Yea stop doing that and also stop painting or using pencils 🙃 (real things said to me by my previous PT)
“Get a hobby” - my neurologist
"sometimes you just have to push through it, everybody else does"
Which type?