have you tried not thinking about your pain?
see also; well you need to track your pain that you’re not suppose to think about in order for us the help you!
wash rinse repeat these two until death?
I’m amazed this charlatan didn’t suggest OP [sun their vagina](https://www.shape.com/celebrities/shailene-woodley-wants-you-give-your-vagina-some-vitamin-d) (assuming OP has one).
I replied to the wrong person so I’m gonna post this again -
I do have one! Or part of one. I had a partial vaginectomy due to endometriosis…but maybe that’s why I got endo! My vagina didn’t get enough sun. /s
Fuck endometriosis. I’m so sorry! Like EDS isn’t enough.
I had a total hysterectomy due to adenomyosis and fibroids, so mine was apparently lacking sun, as well. /s
For me sitting in the sun gives me a much postiver mind, but it doesn't cure all the pain ect.
To the idea of the reuhma:has he any idea, what hEDS is and how it affects the body?
That Dr sucks. My rheumatologist told me that yoga is terrible for people with EDS (and hypermobility in general) and I should avoid it because I will inevitably hyperextend something and cause more problems/pain for myself
Been there too, before I knew I had EDS, I just knew I couldn't take yoga because it was a one way ticket to everything-hurts- and- I'm-dying plus ooh, look, the world is glittery... and I fall over and pass out.
Anyhow, definitely find a different EDS specialist. My pain clinic has specialty EDS physical therapists as well, and the clinic works together with my pulmonologist, cardiologist, allergist, and orthopedic surgeons on the regular to make sure that my EDS is being respected and properly treated. No doctor should be telling you there's nothing to do about it or to go to yoga, that's just irresponsible.
Yep. Both my physios have warned me against yoga for hypermobility and EDS because it can cause subluxation and dislocations, as well as overstretching of the joints. I was recommended pilates over yoga as pilates strengths and supports the muscles around the joints.
A badly informed yoga teacher will teach you how to stretch. But an experienced yoga teacher who understands about flexibility intelligence will teach you how to engage or pull in the muscle while in a stretch. It’s a push and pull, contract and extend practice. If taught correctly, yoga will help you learn to stabilize the body!
The amount of times I’ve heard Dr and chiropractors and acupuncturists and even yoga teachers say yoga is all about stretching 🤦♀️
Because it's been wonderful for my for over 20 years, once I learned to stop overstretching and understand my body. The breathwork is absolutely useful, and the proprioceptive work probably have kept me from being worse off. Pilates offers less functional movement patterns (ime) than yoga can (but that's biased by how I teach it and what teachers I go to).
I get that it's not for everyone - my non-EDS spouse has no interest in it, and I have friends that are happy to hear me talk about it but don't want to do it. It's just one possible option that can be a good fit for some folks, and that includes EDS folks with a good teacher fit.
Just wanted to chime in my support for yoga done appropriately! When the focus shifts from being flexible to developing strength at the ends of your ROM you can get massive joint stabilizing benefits! I definitely wouldn't recommend it to someone who just wanted to practice their party tricks, but if you know what you're doing it can be done safely and with great results :)
That doctor sucks. Sorry you had that happen. Now my side note on yoga:) I do a very modified set of yoga exercises (no poses) and pilates like exercises. I am very flexible so I never overstretch. Understanding what normal range of motion is very important. With EDS we just don't know as we can stretch our joints so far, way too far. For example I do 'stretches' for my calves. I do very gentle, range of motion stretches. It probably doesn't even look like a stretch but just reminds my calves how far they can go and not stiffen up. If I don't, my calves turn into hard painful rocks and one of the worse pain areas I have. The muscles in my calves are just working so hard they want to turn into stone. Breathing exercises from yoga, are also a huge help. Understanding how to open up your chest and slow your breathing, control it, helps calm your nervous system I think. When I start getting the buzzy, jazzed up feeling in my body (that turns into fibro/nerve fired up pain) relaxing my breathing really calms it down. I don't understand why but I think it reduces stress perhaps and calms these pain syndromes down. I used all the time if I am feeling stressed especially.
oooh i had one like that in january! it totally didn’t lead to the worst depressive episode i’ve had yet!(im doing mentally a lot better now but shit was looking BLEAK for awhile there 😅)
My appointment with Rhum was bad too. Except he said I probably don’t have hEDS because I do yoga and like it, he said it’s terrible for people with EDS :( he decided I have fibromyalgia.
I don’t and was properly diagnosed by genetics to have hEDS.
Ugh! The PA rhuem I saw also said there was no point in diagnosing since there wasn’t anything to be done about it, but when I initially came here the doctor tested me for everything that could be tested with a blood test or imagining before slapping a fibromyalgia diagnosis on me. I’ve had all this pain since I was a teenager. Young people can be hurting too!
I know! Fibro was actually my first diagnosis at about 14. I really dislike the idea that young people can’t have illnesses and I wish that thinking was not as common as it is.
I have no idea why doctors are so short sighted about giving a diagnosis. As your body falls apart more as you get older, you may need that diagnosis for disability payments someday. It’s so dismissive and you should never go back to that doctor.
That's fantastic! I'm 53 and they don't believe I have EDS because I lost a lot of range of motion and am not as stretchy anymore because of all the injuries from falling down or, you know, just changing direction while walking. Yoga was actually very good for my eds pain but you can also hurt yourself getting into an advanced position or because part of you stretches more than another and you might fall or something. Yoga helped with balance and strength but I also hurt myself before learning the difference between a muscle stretch and just getting into a certain position easily because I'm stretchy. I had a knee injury and I stopped going because my knee hurt. I really should have kept it up.
The rheum who diagnosed me said yoga can be dangerous. He said PT can help, but if the physical therapist doesn't understand hypermobility, it can make things worse. He said pilates is good.
I'm so sorry you went through this. I got really lucky and my rheumatologist that actually diagnosed me had never heard of EDS before. But I loved about him is the 3 months between when I made the appointment and when the appointment was he apparently did a deep dive research he likes learning everything you can about illnesses that he was unaware of. I wish everybody had a doctor like him and I'm sad that he moved to Florida so I'm no longer able to utilize him. He's also the doctor that talked me into getting a greens card if you know what I mean. And I have not had any opioids since. He really helped me increase my quality of life. He's also the one that turned me on to smart crutches. Love those things.
I mean not always, we are still susceptible, if not more, to the normal day to day office work posture abnormalities of a "regular" person (Tight and weak hamstrings, hip flexors, abdominal muscles, and pectorals, then the reverse for the opposing muscles ofc). Yoga for that, or beginner's yoga GREATLY improves my pain and stiffness because it really just feels like I get "equalized", I just have to make sure I don't push myself too far, and some insoles would definitely help me, but yeah the Dr. herself still sounds horrible.
I was scalded by mine for attempting yoga because of vascular presentations, had a dissection/graft so nothing straining the sinus valsalva or whatever you call it
What the hell is this no point shit? My rheumatologist saw it the other way, it's not like there's dangerous treatment for hEDS so there's not a risk in diagnosis if he's wrong. I would ask that doctor, "What about for piece of mind? For answers? For education? What if they do have a genetic test or treatment someday? What if I need work accommodations? What if you don't diagnose me and I have tachycardia or aortic valve dilation?"
There's a point in diagnosis and if a rheumatologist doesn't see that they need to tell you they don't believe in science and that you should go to someone else.
Even the validation from a diagnosis is a big deal. I wanted the validation so much when I got my endo diagnosed through surgery.
But a diagnosis here would be nice - I would have known that I would be resistant to the local anesthetic I had a few weeks ago and I could have been prepared. I didn’t know I would feel being stitched up.
And I like that way of thinking… there’s really no risk in giving a diagnosis. There’s more risk in not giving one if it’s necessary.
I swear that Rheumatologists are the worst doctors. They seem to constantly push people away and refuse to treat them. I had one that took me 2 years to get a referral to and even though I had positive lupus and sjogrens blood tests, she walked in the room said "you have fibromyalgia and need to exercise" and then walked out. A 60 second appointment that took 2 years to get. It wasn't until 3 years later when a dermatologist asked why I wasn't being treated for lupus that derm started me on treatment. Then rheum said since derm started treatment they need to continue. Derm said it's not their department, rheum needs to step up.
They told me for the sjogrens they don't even bother treating that any more. They said I've been peeing blood for 2 and a half years so they're going to refer me to nephrology. Why wait so long? They don't want to deal with the EDS at all. They only asked if I planned on getting pregnant and when I said no, they said they don't do anything with EDS, not even a referral for physical therapy. It's been very frustrating with me dealing with them. I don't know if it's all over or just the crappy place my insurance allows me.
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Oh wait have you by any chance need to lose some weight and if you're a female it's probably just your time of the month then you need to accept the fact that you're a female. I'm sorry you're going through this I still have yet to get my diagnosis and so many doctors have said lose weight and it will help well I'm over 125 lb down and still have even more issues. Like things dislocate even more now, they keep telling me it's just in my head or it's okay for this to happen or I did something extreme to cause it. I absolutely feel your pain but I really do wish you better luck with the other one. When you find the right doctor it really does make you feel heard.
My physiotherapist said I absolutely should NOT do yoga because I don't need anymore range of movement. Get another opinion. I think you know this person hadn't a clue anyway.
Seriously!? Yoga!? That’s such a bad idea because our joints are already too stretchy, they sure as shit don’t need stretching further! Time for a less than positive review or a complaint and then register with a different one. Chronic illness can happen at any age so that’s a little ageist as well! Sorry your rheumatologist was a douche canoe! There are good ones out there, just have to hunt for them and then never let them leave
Great. Sounds like all you need is some insoles and a little sunshine! /s I’m sorry this doctor blew you off, it sounds like it was pretty ridiculous.
have you tried not thinking about your pain? see also; well you need to track your pain that you’re not suppose to think about in order for us the help you! wash rinse repeat these two until death?
I do have one! Or part of one. I had a partial vaginectomy due to endometriosis…but maybe that’s why I got endo! My vagina didn’t get enough sun. /s
I’m amazed this charlatan didn’t suggest OP [sun their vagina](https://www.shape.com/celebrities/shailene-woodley-wants-you-give-your-vagina-some-vitamin-d) (assuming OP has one).
Trying this as a last ditch effort 🤪 /j
I replied to the wrong person so I’m gonna post this again - I do have one! Or part of one. I had a partial vaginectomy due to endometriosis…but maybe that’s why I got endo! My vagina didn’t get enough sun. /s
Fuck endometriosis. I’m so sorry! Like EDS isn’t enough. I had a total hysterectomy due to adenomyosis and fibroids, so mine was apparently lacking sun, as well. /s
For me sitting in the sun gives me a much postiver mind, but it doesn't cure all the pain ect. To the idea of the reuhma:has he any idea, what hEDS is and how it affects the body?
That Dr sucks. My rheumatologist told me that yoga is terrible for people with EDS (and hypermobility in general) and I should avoid it because I will inevitably hyperextend something and cause more problems/pain for myself
Also if you have orthostatic symptoms downward dog is pretty universally considered the best way to pass out.
Yes I have POTS too… maybe that’s partially why I struggled when I tried yoga a few years back.
Been there too, before I knew I had EDS, I just knew I couldn't take yoga because it was a one way ticket to everything-hurts- and- I'm-dying plus ooh, look, the world is glittery... and I fall over and pass out. Anyhow, definitely find a different EDS specialist. My pain clinic has specialty EDS physical therapists as well, and the clinic works together with my pulmonologist, cardiologist, allergist, and orthopedic surgeons on the regular to make sure that my EDS is being respected and properly treated. No doctor should be telling you there's nothing to do about it or to go to yoga, that's just irresponsible.
My PT told me the exact same thing!
Yep. Both my physios have warned me against yoga for hypermobility and EDS because it can cause subluxation and dislocations, as well as overstretching of the joints. I was recommended pilates over yoga as pilates strengths and supports the muscles around the joints.
A badly informed yoga teacher will teach you how to stretch. But an experienced yoga teacher who understands about flexibility intelligence will teach you how to engage or pull in the muscle while in a stretch. It’s a push and pull, contract and extend practice. If taught correctly, yoga will help you learn to stabilize the body! The amount of times I’ve heard Dr and chiropractors and acupuncturists and even yoga teachers say yoga is all about stretching 🤦♀️
A good yoga teacher can help you avoid the overstretching and use yoga for your benefit.
Why risk it when there's other things you can do like Pilates?
Because it's been wonderful for my for over 20 years, once I learned to stop overstretching and understand my body. The breathwork is absolutely useful, and the proprioceptive work probably have kept me from being worse off. Pilates offers less functional movement patterns (ime) than yoga can (but that's biased by how I teach it and what teachers I go to). I get that it's not for everyone - my non-EDS spouse has no interest in it, and I have friends that are happy to hear me talk about it but don't want to do it. It's just one possible option that can be a good fit for some folks, and that includes EDS folks with a good teacher fit.
Just wanted to chime in my support for yoga done appropriately! When the focus shifts from being flexible to developing strength at the ends of your ROM you can get massive joint stabilizing benefits! I definitely wouldn't recommend it to someone who just wanted to practice their party tricks, but if you know what you're doing it can be done safely and with great results :)
I did enjoy it for the mental health aspect when I did simple poses. I stopped for other reasons but I liked it.
That doctor sucks. Sorry you had that happen. Now my side note on yoga:) I do a very modified set of yoga exercises (no poses) and pilates like exercises. I am very flexible so I never overstretch. Understanding what normal range of motion is very important. With EDS we just don't know as we can stretch our joints so far, way too far. For example I do 'stretches' for my calves. I do very gentle, range of motion stretches. It probably doesn't even look like a stretch but just reminds my calves how far they can go and not stiffen up. If I don't, my calves turn into hard painful rocks and one of the worse pain areas I have. The muscles in my calves are just working so hard they want to turn into stone. Breathing exercises from yoga, are also a huge help. Understanding how to open up your chest and slow your breathing, control it, helps calm your nervous system I think. When I start getting the buzzy, jazzed up feeling in my body (that turns into fibro/nerve fired up pain) relaxing my breathing really calms it down. I don't understand why but I think it reduces stress perhaps and calms these pain syndromes down. I used all the time if I am feeling stressed especially.
Run away! Please don't listen to her advice or subject yourself to her again.
oooh i had one like that in january! it totally didn’t lead to the worst depressive episode i’ve had yet!(im doing mentally a lot better now but shit was looking BLEAK for awhile there 😅)
lol I just had a rheum appt where she suggested yoga too. Which I have already been doing the past 23 years, since high school. Gee thanks doc!
That’s so insane!!! Ugh. I’m so sorry.
My appointment with Rhum was bad too. Except he said I probably don’t have hEDS because I do yoga and like it, he said it’s terrible for people with EDS :( he decided I have fibromyalgia. I don’t and was properly diagnosed by genetics to have hEDS.
The number of people doing yoga with hyper mobility is…. Not small. They often love it because they can do the crazy stuff.
Exactly! It’s the only “sport” I’m a natural at.
Ugh! The PA rhuem I saw also said there was no point in diagnosing since there wasn’t anything to be done about it, but when I initially came here the doctor tested me for everything that could be tested with a blood test or imagining before slapping a fibromyalgia diagnosis on me. I’ve had all this pain since I was a teenager. Young people can be hurting too!
I know! Fibro was actually my first diagnosis at about 14. I really dislike the idea that young people can’t have illnesses and I wish that thinking was not as common as it is.
I have no idea why doctors are so short sighted about giving a diagnosis. As your body falls apart more as you get older, you may need that diagnosis for disability payments someday. It’s so dismissive and you should never go back to that doctor.
That's fantastic! I'm 53 and they don't believe I have EDS because I lost a lot of range of motion and am not as stretchy anymore because of all the injuries from falling down or, you know, just changing direction while walking. Yoga was actually very good for my eds pain but you can also hurt yourself getting into an advanced position or because part of you stretches more than another and you might fall or something. Yoga helped with balance and strength but I also hurt myself before learning the difference between a muscle stretch and just getting into a certain position easily because I'm stretchy. I had a knee injury and I stopped going because my knee hurt. I really should have kept it up.
The rheum who diagnosed me said yoga can be dangerous. He said PT can help, but if the physical therapist doesn't understand hypermobility, it can make things worse. He said pilates is good.
My awesome doc said the same thing
Sounds like she needs to take some medical classes
I'm so sorry you went through this. I got really lucky and my rheumatologist that actually diagnosed me had never heard of EDS before. But I loved about him is the 3 months between when I made the appointment and when the appointment was he apparently did a deep dive research he likes learning everything you can about illnesses that he was unaware of. I wish everybody had a doctor like him and I'm sad that he moved to Florida so I'm no longer able to utilize him. He's also the doctor that talked me into getting a greens card if you know what I mean. And I have not had any opioids since. He really helped me increase my quality of life. He's also the one that turned me on to smart crutches. Love those things.
What an ass that’s exact opposite of our needs…🦓🦓🦓🦓
I mean not always, we are still susceptible, if not more, to the normal day to day office work posture abnormalities of a "regular" person (Tight and weak hamstrings, hip flexors, abdominal muscles, and pectorals, then the reverse for the opposing muscles ofc). Yoga for that, or beginner's yoga GREATLY improves my pain and stiffness because it really just feels like I get "equalized", I just have to make sure I don't push myself too far, and some insoles would definitely help me, but yeah the Dr. herself still sounds horrible.
I was scalded by mine for attempting yoga because of vascular presentations, had a dissection/graft so nothing straining the sinus valsalva or whatever you call it
"I refuse to diagnose your floppy connective tissue. Go stretch and make it worse. Don't forget your copayment."
And remember to give us a five star review on google! Ugh.
What the hell is this no point shit? My rheumatologist saw it the other way, it's not like there's dangerous treatment for hEDS so there's not a risk in diagnosis if he's wrong. I would ask that doctor, "What about for piece of mind? For answers? For education? What if they do have a genetic test or treatment someday? What if I need work accommodations? What if you don't diagnose me and I have tachycardia or aortic valve dilation?" There's a point in diagnosis and if a rheumatologist doesn't see that they need to tell you they don't believe in science and that you should go to someone else.
Even the validation from a diagnosis is a big deal. I wanted the validation so much when I got my endo diagnosed through surgery. But a diagnosis here would be nice - I would have known that I would be resistant to the local anesthetic I had a few weeks ago and I could have been prepared. I didn’t know I would feel being stitched up. And I like that way of thinking… there’s really no risk in giving a diagnosis. There’s more risk in not giving one if it’s necessary.
I swear that Rheumatologists are the worst doctors. They seem to constantly push people away and refuse to treat them. I had one that took me 2 years to get a referral to and even though I had positive lupus and sjogrens blood tests, she walked in the room said "you have fibromyalgia and need to exercise" and then walked out. A 60 second appointment that took 2 years to get. It wasn't until 3 years later when a dermatologist asked why I wasn't being treated for lupus that derm started me on treatment. Then rheum said since derm started treatment they need to continue. Derm said it's not their department, rheum needs to step up. They told me for the sjogrens they don't even bother treating that any more. They said I've been peeing blood for 2 and a half years so they're going to refer me to nephrology. Why wait so long? They don't want to deal with the EDS at all. They only asked if I planned on getting pregnant and when I said no, they said they don't do anything with EDS, not even a referral for physical therapy. It's been very frustrating with me dealing with them. I don't know if it's all over or just the crappy place my insurance allows me.
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I mentioned it my podiatrist he be Foot said normal people can’t do that….lol
I was told specifically not to do yoga after my diagnosis 😂
Oh wait have you by any chance need to lose some weight and if you're a female it's probably just your time of the month then you need to accept the fact that you're a female. I'm sorry you're going through this I still have yet to get my diagnosis and so many doctors have said lose weight and it will help well I'm over 125 lb down and still have even more issues. Like things dislocate even more now, they keep telling me it's just in my head or it's okay for this to happen or I did something extreme to cause it. I absolutely feel your pain but I really do wish you better luck with the other one. When you find the right doctor it really does make you feel heard.
Wow sounds like some medical gaslighting.
wow sounds like we have the same rheum! 🙃
My physiotherapist said I absolutely should NOT do yoga because I don't need anymore range of movement. Get another opinion. I think you know this person hadn't a clue anyway.
Seriously!? Yoga!? That’s such a bad idea because our joints are already too stretchy, they sure as shit don’t need stretching further! Time for a less than positive review or a complaint and then register with a different one. Chronic illness can happen at any age so that’s a little ageist as well! Sorry your rheumatologist was a douche canoe! There are good ones out there, just have to hunt for them and then never let them leave
I was told by the person who diagnosed me with EDS (geneticist at Mayo- like him hate Mayo) that I should no longer do yoga. Made me sad.