I don’t have EDS but I have wicked hypermobility. I can spot us a mile away. Shifting, bending. It was fun when I was younger. Lots of party tricks but injuries after 40. It was a gym trainer who diagnosed me.
Yes exactly! A lot of stretches don't work, if you've gotten to the point where you'd only be stretching ligaments not muscle. There are some I learned at physio though, where certain positions hold the muscles in place better for stretching.
Thanks! I’ll have to research those. I need some for back and butt. Belly on the ground in child’s pose, or falling asleep in pigeon pose…doesn’t quite cut it.
ooph, yeah those are tough spots. I hurt in the same places. What has worked for me--and obviously this isn't medical advice, just one person trying to figure it out ...trying to help someone else figuring it out.
But what works for me for the lower back/sacrum area is:
1. leaning forward in a deep 'asian squat'.
2. laying on my back and pulling my legs tight to my chest.
For the low C's scapula, put your opposite arm behind your back to hold the muscle in place for the stretch, like this:
I understand your problem with doctors. I had a auto accident where my head snapped to the left and my jaw dislocated. I also hit the back of my head and knocked the car seat flat. Afterwards I had vertigo when I turned my head to the left, threw up and had a migraine. Doctors decided I was faking. I figured out my dislocated jaw was poking me in the ear when I turned my head left which caused the vertigo and the rest. Cranial Sacral Therapy and Rolfing fixed it. Took me 6 years of pain to find out what would work. Doctors only took all the insurance money and said after they got that, I was faking. ☹️. Not fond of them. Understand what you went through a lot.
Damn, that's horrible!! Wouldn't it be great if we got to line up all the doctors who gaslit us and called us liars and shove the diagnosis they missed in their faces? Well, not the ones who actually tried, and who treated us like human beings. Just the asshat ones hehe.
That's the third time I heard about Rolfing recently! It must be getting better known these days.
I know another woman who has the same thing. I didn't know all the details like you outlined in your article, Robin, but I can now sympathize with her...and you. I also am going through a rare disease with the same health care issues that you mentioned. My PCP wrote me a referral to a psycho doctor, which I refused to use. You are fortunate that your mother helped advocate. We must do so much of that in our healthcare system.
Rare diseases are fun huh? Do you get the pleasure of having to try to inform your doctor(s) about your disease as much as you can in a 10 minute visit while still making it productive?
I'm sooo fortunate for my mom. Advocacy is so important, because fighting the fighting in itself is hard.
Well hell Robin! Even though you can do some really cool shit with your body (in addition to your words) and entertain the rest of us weirdos, I'm sorry you have to endure the pain and other effects of EDS. Chronic pain sucks! I've been there.
I agree with what you say about doctors and advocating for your own health. Here in the good ole' USA, it's a shit show with our medical system and doctors. I mean just look at the obesity rates and people hooked on insulin for life now. That's another story though. Years ago my wife and I started doing our own research about health and wellness and we're so glad we did. So much we've been indoctrinated to believe the past 70 years has been bullshit.
Last week while in Pagosa Springs, CO, I ended up in the emergency room due to chest pain. I have had severe PVCs (heart with crazy rave beats) over the years and had all kinds of test done with no problems, but since my dad died of a heart attack at 51, the ER doc wanted to run half a dozen expensive tests to pay for the new hospital. Apparently I do have a heart even though it's black but all tests were negative. And yet he told me to see a cardiologist immediately because I would have a heart attack in 30 days. Not maybe, not possible, but definitely the ticker would explode within the month. Which means this could be one of the last comments I ever leave.
All this long story to say ALL of us need to do what's best for us regarding our health and not blindly trust what the "experts" say. You have done a great job for yourself.
Finally I have to tell you I LOVE the photos. I've read your work for a while but have only seen your avatar and I really wondered what you looked like or if you were even real. The thoughts kept me awake at night wondering if I enjoyed the writing of a human or machine.
Keep up the great work and stories. I think you're awesome and one in a bazillion.
I'm sorry I laughed at "excited to catch a weird one." Doctors are weird, aren't they?
Those prayer hands are something else. You'd do well with my yoga app. That AI-lady has oddly long arms...or I have oddly short ones. She is physically impossible.
On a more serious note, thank you for sharing this. Although funny because of your writing style, I don't envy the chronic parts of your condition. Keep praying (behind your back) and maybe they'll come up with a cure?? For the record, I've been on the neurology wait list for almost 3 years for chronic migraines so I get it....FREE Canadian healthcare for the win.
oh good, you were supposed to laugh at catching a weird one. I did hehe.
Yoga isn't great for my people--but we can annihilate any class in terms of flexibility (but we blow goats at endurance). It isn't fair to the others haha. Weird 'fun' fact--my armspan is weirdly long, so I might be the human incantation of your AI lady lol.
That sucks you have to deal with migraines, that's rough. :( Ugh, the neurology waitlist. I'm not even on it yet, they won't deal with my neckpain (EDS people can get something called craniocervical instability) until I lose more sensation in my arms and legs. *Face palm.
There's a daily homeostasis pain then variable pain, but most days are manageable. The chronic fatigue is probably the harder part. I sleep a full night but wakeup feeling like I haven't slept. But like with many chronic conditions every day is a little different, but I have some good days :)
And it takes some serious time management to get through work plus all the other shiznit. That's why sometimes I take a day or two to respond, I'm not being a dick I swear haha. I just have to timeblock my days and some days I just run out of steam and my responding to my (internet) friends is deprioritized over self care.
I always knew you had superpowers! Glad to hear it's not a progressive cancer. I have "special skills" too. So, two questions (or 3, 7, 28).
1) When you got fed up with a dismissive doctor who minimized your concerns, did you ever tell them something like this? "It's normal? I thought so, but you know - primary care doctors are idiots. He said my pulse was slow." Then turn your head away so the pulse disappeared in both arms? Yes, those wait times for an MRI can be shortened. I bet you can do this by impinging the blood supply. You get ten more points by lagging on getting the MRI and making them convince you of the need.
2) Is your digestion messed up and blamed on motility? How many times has a doctor tried to explain the autonomic system and you've asked him to write it down, then broken out a blue pencil and "edited it" for them?
3) Do you have relatives iwth this? My daughter also claims she's special because she can bend her finger bones back without moving her knuckles. "Pshaw!" I say, then bend my wrist backward 120 degrees.
4) Were odd blood tests brushed aside as "maybe you're catching a cold, or just in pain." Odd white cell counts and chronic inflammation are usually the first hint there's an autoimmune disease that can effect joints, skin, internal organs, the brain, blood, you know - body cells. I gave up stamp collecting for multiple autoimmune disorder diagnoses before saying, "No thanks. What difference will it make?"
I'm genuinely sorry, Robin. I know you've got to be in bad pain. Before going down the radical px treatment route, hit me up in chat. Some early interventions for childhood Rheumatoid Arthritis may have weakened my immune system so other autoimmune disorders took hold.
In the meantime, how are you at making seal noises and leaping high in the air for fish? I can talk to my three-ring circus leader and see if there are openings.
1. I...did not understand this. Could be the phrasing, could be my own brain fog.
2. I never got help with my digestion, I figured that part out on my own over about a decade. But yeah..that sounds about right sadly.
3. Ooh you're a bendy breed of family! None of my immediate family have this, but we're overall genetic defects and have a wide range of rare diseases.
4. I had the exact opposite experience, all my blood tests were normal. So they'd send me to another specialist (which would be 6 months to 1 year+ wait), who would ofetn rerun the same tests *face palm. EDS is a genetic disorder not autoimmune (although I have celiac too, because health conditions tend to cluster) so it doesn't increase antibodies, ANA levels, etc. But I hear you on the constant relying on bloodwork for diagnoses!
I'm sorry you're going through all that too, ugh that sounds rough. Especially childhood RA, eek!
I haven't taken to joining the circus yet...but I'll hit you up for a freakshow hookup soon haha
New 1: (New one - get it? Oh, I'm so clever! Ouch - I just annoyed myself.)
Replacement 1: Do you have body parts fall asleep often? Get light-headed or faint?
When nerves, veins, and/or arteries are impinged signals to the brain and body part get messed up and blood and oxygen flow are compromised. This is what happens when your hand or foot falls asleep, or someone chokes you.
I was getting light headed so my dr sent me to the neurologist I annoyed in my first example. I was told years earlier I had "thoracic outlet syndrome." The neurologist said, "I don't believe TOS is real," so I demonstrated by tilting my head to the side, causing one hand to grow cold after impinging the blood supply.
When someone needs bleeding stopped we apply pressure or tourniquets. When we're too bendy (hyper-mobility) we accidentally interrupt nerve signals and blood supply.
Hold your collected pearls for this next part -
A million years ago I worked for a Seattle Orthopedic and Neurosurgery Clinic with 11 surgeons. I quickly learned some of the doctors had skeptical attitudes about what their patients reported. Female patients got the best help from these guys (they were all male) when they inspired the "heroic rescuer of a clueless fair maiden in dire danger she doesn't recognize" response.
Because they were surgeons, they liked to cut.
If someone walked in with a head four times the normal size screaming, "My brain is about to explode because I have increased intracranial pressure from damage to my pituitary canal! Give me Diamox!" the doctor would immediately doubt them, wonder if a neurosurgeon had screwed up, and cover their little malpractice insurance farting hole as they sent the patient to a therapist.
Their hero complex was threatened, not engaged.
If an attractive young woman came in with seizures and said, "This is normal, right?" the doctors would meet and debate her case and treatment options. I'd hear things like, "But she's a lovely girl with two kids!" Usually, they couldn't remember patient names or ages.
As in life and insurance, people normally get the help they need if they appear they don't need it, or don't have a clear idea of what they need.
I started wearing wrist braces to bed so I wouldn't wake up with frozen "claw hands." Keeping the blood supply and nerves free from impingement helps in the long run. Doctors and physical therapists recommend exercize. Grrrrr..... I could provide the percussion part for a heavy metal band if I did jumping jacks near a microphone.
Do you know that you can now have one ear nice and plump and the other almost a withered, desiccated thing? Oh well, can’t hear too well out of that one anyway.
I have EDS as well. Just diagnosed recently and given a SHIT TON of supplements to help my body with synthesizing the amino acids we EDS folk don't happily make/absorb. And honestly? When I take my magical potion of powders and pills, I feel like I have energy for the first time! I usually work off of pure adrenaline and grit, but now this concoction of goodness wakes me up a bit and gives me some needed strength. I also focus on the bones more than the mucles now when I exercise. Normal, functional alignment isn't really a thing for us by the time the diagnoses comes. Our joints have slipped into places that inhibit proper range of motion and muscle fucntion, making it hard to know what the f*** is happening in our meatsuits. By focusing on the bones and how the joint should align, you'll find the areas you need to shift. Knowing how a joint should move is also an asset. Watching videos and using a mirror to see where your movement differs often helps. I have more tips... if you like, but this comment is already loooooooong. 💜
I, too, have EDS. It took me close to a decade to finally get a proper diagnosis. I see that medical gaslighting continues to be rampant!! Sucks to waste so much time and money on gaslighters before we are able to get the help and answers we need...
I don’t have EDS but I have wicked hypermobility. I can spot us a mile away. Shifting, bending. It was fun when I was younger. Lots of party tricks but injuries after 40. It was a gym trainer who diagnosed me.
That's so true--we can spot each other! Shifting, bending, LEANING...we're always leaning haha. And the weird sitting positions we shift through.
Alas, the party tricks were fun back in the day. Albeit we probably shouldn't have been doing those hehe.
A gym trainer, I was going to say that's wild--but that actually makes a lot of sense.
Same but it was massage therapist. No sense in giving me stretches to do cuz the joints are so hypermobile nothing gets stretched
Yes exactly! A lot of stretches don't work, if you've gotten to the point where you'd only be stretching ligaments not muscle. There are some I learned at physio though, where certain positions hold the muscles in place better for stretching.
Thanks! I’ll have to research those. I need some for back and butt. Belly on the ground in child’s pose, or falling asleep in pigeon pose…doesn’t quite cut it.
Hmm..I don't know any for the butt, but do for the back. Upper or lower back?
I hear you on child's pose, that's not stretching anything for peeps like us...it's just comfortable for me haha
Lower mostly. L3 right down into sacrum.
Upper between C7 and about T5-ish. Between scapula, rhomboid area.
Tough areas to get at.
ooph, yeah those are tough spots. I hurt in the same places. What has worked for me--and obviously this isn't medical advice, just one person trying to figure it out ...trying to help someone else figuring it out.
But what works for me for the lower back/sacrum area is:
1. leaning forward in a deep 'asian squat'.
2. laying on my back and pulling my legs tight to my chest.
For the low C's scapula, put your opposite arm behind your back to hold the muscle in place for the stretch, like this:
https://cdn.shopify.com/s/files/1/0368/5662/7245/files/Upper_Trapezius_Stretch.jpg?v=1664789617
It really takes a village of healthcare professional to spot and deal with these conditions!
Gumby cool https://youtu.be/zKQTHxGdWv4?si=MfVwJw6qpSzaQkr4
I bow to you Robin. Seriously, not joking. Thankyou for your extraordinary, creative writing . .. turning everything into a sort of poetry,
Aww thanks Tony! Writing keeps me sane(ish) haha
I understand your problem with doctors. I had a auto accident where my head snapped to the left and my jaw dislocated. I also hit the back of my head and knocked the car seat flat. Afterwards I had vertigo when I turned my head to the left, threw up and had a migraine. Doctors decided I was faking. I figured out my dislocated jaw was poking me in the ear when I turned my head left which caused the vertigo and the rest. Cranial Sacral Therapy and Rolfing fixed it. Took me 6 years of pain to find out what would work. Doctors only took all the insurance money and said after they got that, I was faking. ☹️. Not fond of them. Understand what you went through a lot.
Damn, that's horrible!! Wouldn't it be great if we got to line up all the doctors who gaslit us and called us liars and shove the diagnosis they missed in their faces? Well, not the ones who actually tried, and who treated us like human beings. Just the asshat ones hehe.
That's the third time I heard about Rolfing recently! It must be getting better known these days.
What a journey. Thank the gods for your pushy mom and for your own kickass spirit. May your good doctor find ways to keep you out of pain.
Thanks Jan! And yes I owe my pushy-bitch mom a big thanks too haha. She's where I get my kickass spirit from.
I learned something; I felt for you; and yet I had to chuckle. And I believe those things were precisely the intent. Thank you for sharing, Robin. 🫶🏻
You clearly understood the assignment Pamela :)
I know another woman who has the same thing. I didn't know all the details like you outlined in your article, Robin, but I can now sympathize with her...and you. I also am going through a rare disease with the same health care issues that you mentioned. My PCP wrote me a referral to a psycho doctor, which I refused to use. You are fortunate that your mother helped advocate. We must do so much of that in our healthcare system.
Rare diseases are fun huh? Do you get the pleasure of having to try to inform your doctor(s) about your disease as much as you can in a 10 minute visit while still making it productive?
I'm sooo fortunate for my mom. Advocacy is so important, because fighting the fighting in itself is hard.
No fun. Keep up the good fight.
Well hell Robin! Even though you can do some really cool shit with your body (in addition to your words) and entertain the rest of us weirdos, I'm sorry you have to endure the pain and other effects of EDS. Chronic pain sucks! I've been there.
I agree with what you say about doctors and advocating for your own health. Here in the good ole' USA, it's a shit show with our medical system and doctors. I mean just look at the obesity rates and people hooked on insulin for life now. That's another story though. Years ago my wife and I started doing our own research about health and wellness and we're so glad we did. So much we've been indoctrinated to believe the past 70 years has been bullshit.
Last week while in Pagosa Springs, CO, I ended up in the emergency room due to chest pain. I have had severe PVCs (heart with crazy rave beats) over the years and had all kinds of test done with no problems, but since my dad died of a heart attack at 51, the ER doc wanted to run half a dozen expensive tests to pay for the new hospital. Apparently I do have a heart even though it's black but all tests were negative. And yet he told me to see a cardiologist immediately because I would have a heart attack in 30 days. Not maybe, not possible, but definitely the ticker would explode within the month. Which means this could be one of the last comments I ever leave.
All this long story to say ALL of us need to do what's best for us regarding our health and not blindly trust what the "experts" say. You have done a great job for yourself.
Finally I have to tell you I LOVE the photos. I've read your work for a while but have only seen your avatar and I really wondered what you looked like or if you were even real. The thoughts kept me awake at night wondering if I enjoyed the writing of a human or machine.
Keep up the great work and stories. I think you're awesome and one in a bazillion.
I'm sorry I laughed at "excited to catch a weird one." Doctors are weird, aren't they?
Those prayer hands are something else. You'd do well with my yoga app. That AI-lady has oddly long arms...or I have oddly short ones. She is physically impossible.
On a more serious note, thank you for sharing this. Although funny because of your writing style, I don't envy the chronic parts of your condition. Keep praying (behind your back) and maybe they'll come up with a cure?? For the record, I've been on the neurology wait list for almost 3 years for chronic migraines so I get it....FREE Canadian healthcare for the win.
oh good, you were supposed to laugh at catching a weird one. I did hehe.
Yoga isn't great for my people--but we can annihilate any class in terms of flexibility (but we blow goats at endurance). It isn't fair to the others haha. Weird 'fun' fact--my armspan is weirdly long, so I might be the human incantation of your AI lady lol.
That sucks you have to deal with migraines, that's rough. :( Ugh, the neurology waitlist. I'm not even on it yet, they won't deal with my neckpain (EDS people can get something called craniocervical instability) until I lose more sensation in my arms and legs. *Face palm.
So is your pain daily? Is that what "chronic" means in your world? I couldn't imagine daily headaches, I'd be unemployed 😩
There's a daily homeostasis pain then variable pain, but most days are manageable. The chronic fatigue is probably the harder part. I sleep a full night but wakeup feeling like I haven't slept. But like with many chronic conditions every day is a little different, but I have some good days :)
And it takes some serious time management to get through work plus all the other shiznit. That's why sometimes I take a day or two to respond, I'm not being a dick I swear haha. I just have to timeblock my days and some days I just run out of steam and my responding to my (internet) friends is deprioritized over self care.
Awww nobody thinks you're a dick 😊
I recently found out that yoga isn't always great for us EDSers. If your practice focuses on flexibility over strength, it can be problem. 😔
I always knew you had superpowers! Glad to hear it's not a progressive cancer. I have "special skills" too. So, two questions (or 3, 7, 28).
1) When you got fed up with a dismissive doctor who minimized your concerns, did you ever tell them something like this? "It's normal? I thought so, but you know - primary care doctors are idiots. He said my pulse was slow." Then turn your head away so the pulse disappeared in both arms? Yes, those wait times for an MRI can be shortened. I bet you can do this by impinging the blood supply. You get ten more points by lagging on getting the MRI and making them convince you of the need.
2) Is your digestion messed up and blamed on motility? How many times has a doctor tried to explain the autonomic system and you've asked him to write it down, then broken out a blue pencil and "edited it" for them?
3) Do you have relatives iwth this? My daughter also claims she's special because she can bend her finger bones back without moving her knuckles. "Pshaw!" I say, then bend my wrist backward 120 degrees.
4) Were odd blood tests brushed aside as "maybe you're catching a cold, or just in pain." Odd white cell counts and chronic inflammation are usually the first hint there's an autoimmune disease that can effect joints, skin, internal organs, the brain, blood, you know - body cells. I gave up stamp collecting for multiple autoimmune disorder diagnoses before saying, "No thanks. What difference will it make?"
I'm genuinely sorry, Robin. I know you've got to be in bad pain. Before going down the radical px treatment route, hit me up in chat. Some early interventions for childhood Rheumatoid Arthritis may have weakened my immune system so other autoimmune disorders took hold.
In the meantime, how are you at making seal noises and leaping high in the air for fish? I can talk to my three-ring circus leader and see if there are openings.
hehe, superpowers, yes. Weird ones.
1. I...did not understand this. Could be the phrasing, could be my own brain fog.
2. I never got help with my digestion, I figured that part out on my own over about a decade. But yeah..that sounds about right sadly.
3. Ooh you're a bendy breed of family! None of my immediate family have this, but we're overall genetic defects and have a wide range of rare diseases.
4. I had the exact opposite experience, all my blood tests were normal. So they'd send me to another specialist (which would be 6 months to 1 year+ wait), who would ofetn rerun the same tests *face palm. EDS is a genetic disorder not autoimmune (although I have celiac too, because health conditions tend to cluster) so it doesn't increase antibodies, ANA levels, etc. But I hear you on the constant relying on bloodwork for diagnoses!
I'm sorry you're going through all that too, ugh that sounds rough. Especially childhood RA, eek!
I haven't taken to joining the circus yet...but I'll hit you up for a freakshow hookup soon haha
:) I forgot to ask a related question:
New 1: (New one - get it? Oh, I'm so clever! Ouch - I just annoyed myself.)
Replacement 1: Do you have body parts fall asleep often? Get light-headed or faint?
When nerves, veins, and/or arteries are impinged signals to the brain and body part get messed up and blood and oxygen flow are compromised. This is what happens when your hand or foot falls asleep, or someone chokes you.
I was getting light headed so my dr sent me to the neurologist I annoyed in my first example. I was told years earlier I had "thoracic outlet syndrome." The neurologist said, "I don't believe TOS is real," so I demonstrated by tilting my head to the side, causing one hand to grow cold after impinging the blood supply.
When someone needs bleeding stopped we apply pressure or tourniquets. When we're too bendy (hyper-mobility) we accidentally interrupt nerve signals and blood supply.
Hold your collected pearls for this next part -
A million years ago I worked for a Seattle Orthopedic and Neurosurgery Clinic with 11 surgeons. I quickly learned some of the doctors had skeptical attitudes about what their patients reported. Female patients got the best help from these guys (they were all male) when they inspired the "heroic rescuer of a clueless fair maiden in dire danger she doesn't recognize" response.
Because they were surgeons, they liked to cut.
If someone walked in with a head four times the normal size screaming, "My brain is about to explode because I have increased intracranial pressure from damage to my pituitary canal! Give me Diamox!" the doctor would immediately doubt them, wonder if a neurosurgeon had screwed up, and cover their little malpractice insurance farting hole as they sent the patient to a therapist.
Their hero complex was threatened, not engaged.
If an attractive young woman came in with seizures and said, "This is normal, right?" the doctors would meet and debate her case and treatment options. I'd hear things like, "But she's a lovely girl with two kids!" Usually, they couldn't remember patient names or ages.
As in life and insurance, people normally get the help they need if they appear they don't need it, or don't have a clear idea of what they need.
I started wearing wrist braces to bed so I wouldn't wake up with frozen "claw hands." Keeping the blood supply and nerves free from impingement helps in the long run. Doctors and physical therapists recommend exercize. Grrrrr..... I could provide the percussion part for a heavy metal band if I did jumping jacks near a microphone.
This concludes my Weird Anatomy lecture series. 🤣
Do you know that you can now have one ear nice and plump and the other almost a withered, desiccated thing? Oh well, can’t hear too well out of that one anyway.
And you didn't even bring pokey
I have EDS as well. Just diagnosed recently and given a SHIT TON of supplements to help my body with synthesizing the amino acids we EDS folk don't happily make/absorb. And honestly? When I take my magical potion of powders and pills, I feel like I have energy for the first time! I usually work off of pure adrenaline and grit, but now this concoction of goodness wakes me up a bit and gives me some needed strength. I also focus on the bones more than the mucles now when I exercise. Normal, functional alignment isn't really a thing for us by the time the diagnoses comes. Our joints have slipped into places that inhibit proper range of motion and muscle fucntion, making it hard to know what the f*** is happening in our meatsuits. By focusing on the bones and how the joint should align, you'll find the areas you need to shift. Knowing how a joint should move is also an asset. Watching videos and using a mirror to see where your movement differs often helps. I have more tips... if you like, but this comment is already loooooooong. 💜
I, too, have EDS. It took me close to a decade to finally get a proper diagnosis. I see that medical gaslighting continues to be rampant!! Sucks to waste so much time and money on gaslighters before we are able to get the help and answers we need...
Thanks for sharing your story!
I must admit I tried to copy all the pictures
May the goddesses bless you!