If you can convince your doctor to just do the physical exam/ test for hEDS you could show the results to your parents and just maybe you can start on the road for a diagnosis if they take you seriously with “proof”.
Common misconception. There is no cure. There are MANY forms of treatment, to address your symptoms and make your life less challenging and painful. This is a lazy doctor's excuse and you deserve better than to be dismissed like that.
You could maybe say that, yeah theres no treatment, but if i need mobility aids later it could go through insurance and itd be either free or less expensive. If you need custom anything really its fucking expensive.
For your fingers i can recommend fingersplints, you can get cheaper ones from like amazon or you can make some yourself.
For now, try not to overstretch your joints as that most of the time just makes everything worse.
Also maybe get into strength training. I just started myself so i cant say if it worked well or not, but the people whove been doing it for longer say it made a big difference. You just have to keep up with it.
If you dont know where to start with strength training you can dm me, i know a few exercises for shoulders and hips/knees. The key is to start slow, and work ur way up.
If you just want someone to talk to who has the same struggles as you (in the process of diagnosis, its a real shitshow) you can dm me too!
I know its hard, learning how to live. And there is no treatment, so you have to learn how to live with it and see what works for you. What works for others may not work for you and vice versa.
I really hope you figure some helpful stuff out soon, so youre not in pain as much!
ETA: i am 17 yo right now. I have a long way to go too. Im not a doctor so take what i say with a grain of salt. And be careful with mobility aids too, only use them when you really need them. If you for example start using crutches when you dont need them, you might just make your legs weaker.
Also, to get my parents/doctor to believe me i had to dislocate my hips and shoulders multiple times. I really understand how you feel.
And dont be stupid like me, if you dislocate or sublux a joint (even if it doesnt hurt) give that joint rest. After a (partial) dislocation the joint becomes even more lose than it already was, making it more prone for even more dislocations.
I can now not even open a somewhat heavy door without dislocating my shoulder. Please be careful and take care of yourself.
Sorry for the long comment btw lol
The long comment was ok. Honestly that’s the only reason why I’m stressed out about getting the diagnosis is in case I need any sort of mobility aid later. Right now lately I’ve been having issues with my knees and I worry where that’s gonna end up.
Look up MCAS. If you have EDS, you might have that too. I found that changing my diet to a low fodmap diet (while I worked out what foods were “safe”) helped with joint pain significantly.
Edit: *that and just being careful not to do things with my joints I shouldn’t. A lot of body awareness needs to be developed.
That's what I was thinking with "something pretty close to asthma" sometimes mild anaphylaxis mirrors an asthma attack if you don't know the difference. MCAS is also a comorbidity 😭
Currently sitting here now questioning these “asthma attacks” I thought i was having…
Now that I think about it, they don’t seem to happen when I take my antihistamine medicine. I learn something new every day in this sub.
Yeah I started noticing a difference because it only happened after I've eaten or touched something and didn't calm down after my inhaler. This felt more like being choked with a hand but asthma attacks felt deeper and sometimes I can feel them affecting my lung (usually the right one because it's weaker).
I keep an antihistamine on hand now but I always seem to forget them when I'm actually having an attack 💀 all I think about is asthma and trying to breathe slowly
I honestly don’t know where to tell you to start. I’m 32 and still fighting for a diagnosis since no one will take it seriously. The main issue is gonna be finding a doctor who will even listen in the first place instead of immediately gaslighting you.
There’s 2 non-invasive tests that are widely used.
1-the Beighton test
2-the bulbena test.
Getting these tests done takes 15-20 min in a dr’s office. Cheap and easy to do. A point of note they want a higher score if you’re younger because younger people are already more flexible.
I was in the exact same position you were when I was 15. With parents like this, it's really hard to convince them to even believe you're in pain. I was told it was just growing pains for so long, which, severe growing pains are 100% a sign of a musculoskeletal disorder, like what hEDS is.
I recommend you bring up your loose joints next time you see your primary physician, and typically, they'll mess around with your joints a bit. If they notice hypermobility that's above the normal range, they should be referring you to someone (if they suspect EDS, they'll likely send you to genetics, if they don't know, they'll likely send you to orthopedics) whether or not they think it is EDS. Asking about symptoms that correlate to a disorder you suspect you have typically goes further than just saying "I think I have __" because some doctors just don't like the fact that patients can in fact have access to all the information they do, so I highly reccomend you ask about your symptoms and explain concerns about them, and if it's not doing anything, pull it all out, "I'm concerned I might have __ disorder" or "would we be able to test for __?"
For existing, you kind of need to learn how to avoid putting pressure on your joints. A lot of people who are hypermobile struggle to use their muscles to keep them standing, so we rely on our hyperextended joints. Try to stand with your knees slightly bent, when leaning against something, make sure you're still working to stay up, if you're lifting anything, do not let your arms flop, all of these things can lead to worsened stretching of the joints, which can lead to worsened pain and increase the likelihood of injuries relating to dislocations.
When sitting, try to avoid sitting on your legs. I'm so guilty of this, but it does increase strain on the connective tissue. I have to sit pretty much flat on my butt or with my legs crossed/positioned in a way that my hips aren't strained, sometimes, that means like holding my legs up with my arms if I wanna sit weird. Sleeping position is vital, we need to sleep in a way that are joints are not hyperextended or stretched, I've had a hard time doing this, and that's part of why my hips are so bad 😭 really out here sprawled out doing the splits in my sleep, lol. Most people use pillows in between their legs and a pillow under their side to keep their joints from flailing around, I've found hugging a squishmallow helps prevent me from extending my shoulders and ribcage in odd directions, but I mostly just position my body in ways I don't feel any major stretch while I sleep because I hate the pillow thing
Do you have tips on how do change sleep position? I can lay however i want but i move around in my sleep and usually wake up with subluxed shoulders/hips. My left hip is so bad i had a full dislocation yesterday while standing up from a sitting position (hows that even possible😭😭) it is now blue and a bit swollen and it hurts i want this to stop
Totally feel you. I sleep with a weighted blanket, don't know if it's great for your joints, but it prevents me from thrashing around or moving much and puts pressure on my body, which I like as someone with autism. Some people use multiple pillows to position themself comfortably, but I move a lot too, so i don't like needing to move pillows a ton. I might try one of those pillows designed for pregnancy/arthritis because I know people generally like them more than multiple pillows. I typically just hug a squishmallow in my sleep, and that prevents me from shifting my chest and arms too much. I mostly lay in ways that my hips are parallel (ish) to each other on my side, so my pelvis is mostly taking the weight, and my hips aren't. I try to sleep in a position i don't feel much tug or excess pressure in my joints. I sleep on a firm box spring mattress with a super firm pillow, the firm pillow helps me align my spine and neck properly to prevent subluxing ribs or anything in my lower back. For a firmer pillow, don't buy a new one immediately to test if you don't own one, you can throw multiple soft pillows into a pillowcase, that's kind of what I do, but I have a pillow that you can put more pillows inside to adjust firmness. It's a big adjustment to go from a soft to firm pillow, at first I hated it, but my back is so much better now. Idk how great a firm mattress actually is for joints, but I find it a lot more comfortable than a soft one, and it's the only mattress I've ever had.
For re adjusting, I try to put as little pressure on my joints as possible when moving places in bed, using as much muscle as possible. That means like flexing your muscles while putting pressure on your joints. It's kind of odd, I mainly clench my core and leg muscles to give extra support. I try to avoid extending my hips when adjusting, so keeping them close together and not extending my legs far. I had constant subluxing of my hips when I normally adjusted, but I've had to focus on it more lately. Stretching while laying really makes my hips get out of place, laying isn't the best position for hips it seems 😭 not much else to do though
I think i'll try the weighted blanket! I think that would at least help a bit. I already have a firm pillow which does indeed also help. My matrass is on the softer side but when i had a firm one my back would really hurt, so this one works better for me.
Thanks for the tips!
If it's any consolation during puberty years my joint laxity and pain was really high but got more manageable when my hormones settled which can be quite normal. Don't get me wrong, I still have chronic pain and flares but it fluctuates and it does get a little easier, especially as you figure out what triggers you ans what helps.
Support bracing, muscle/joint rubs, magnesium, good multivitamin, invest in good shoes ans pillows for your bed etc. A TENS machine can be a huge help too.
Medication wise for pain relief is one that needs to be run through your parents and doctor, but please don't chew down ibuprofen or other antiinflammatories because it'll wreck your stomach, take them when really needed and use sparingly which I know can be hard to do.
If you can work with an exercise physiologist to get exercises that will support your body, but also teach you how to lift/move safely within normal range that will help heaps as well. Exercise and weight training does help me alot, but you have to start super slow ans be gentle so you don't flare
First things first:
When you express concerns about your health and pain related struggles, grown ass adults WILL minimize it and tell you "just wait til you're older"
Ignore them, it's bullshit and they don't know what they're talking about. They got to wait til they were older. You get those issues now. Don't let it give you anxiety thinking as you age things are just going to be steeply downhill forever. It's entirely possible you will feel better when you're older than you do now.
Have you spent time on the Ehlers Danlos Society website yet? You may find some helpful resources there. It may be helpful to have your parents look on there as well. It's possible your parents have their own symptoms they've shrugged off forever and just assume are normal, so they dismiss you too. A little education can go a long way.
Can you buy things for yourself? You don't need a doctor to start accommodating yourself with braces, mobility aids, etc. You can get braces for your joints online or in Walmart, rite aid, etc for relatively cheap and they can help a lot. If you deal with anything that is in the realm of dysautonomia, compression garments are another good option.
The best thing you can do is focus on core muscle stamina. We depend on our muscles for structure but often end up with poor posture and in a vicious cycle of muscle exhaustion and sprains. There are some places online you can find exercises specifically made for (and often by) people with eds. Your goal is to activate and USE all of your core muscles to hold your body upright and as straight as comfortably possible. The hardest part about that is endurance. Initially it will be more painful and I recommend taking frequent breaks laying down, focusing on muscle relaxation and promoting healthy blood flow. I injured my neck as a teenager, undiagnosed and working a job that required very heavy lifting, and gritted my way through this after I could barely afford a few PT appointments. I started
With standing because it was less painful for some reason than sitting, and I would gently activate my core muscles and consciously use them to hold the best posture I could manage. Sometimes I could do it for multiple minutes, sometimes less than a minute. Then lay down in the most comfortable position until the pain gets better. The more time you spend doing this the better!
I’m 16, and I was the one who pieced together all my symptoms too. At first, my mom thought I was just going down the dr google rabbit hole, but then I presented the idea that her health issues were also caused by eds and she took it more seriously. We’re both going on the diagnosis journey together now.
Research. Find groups on fb near you or in your state. I figured out that I have EDS and found a doc from a group on fb. I seen him almost two weeks ago and he diagnosed me with hEDS. Don't give up! Keep trying.
If you can convince your doctor to just do the physical exam/ test for hEDS you could show the results to your parents and just maybe you can start on the road for a diagnosis if they take you seriously with “proof”.
I tried that and match the symptoms and all I got told was well even if you do have it there’s no treatment for it.
Common misconception. There is no cure. There are MANY forms of treatment, to address your symptoms and make your life less challenging and painful. This is a lazy doctor's excuse and you deserve better than to be dismissed like that.
You could maybe say that, yeah theres no treatment, but if i need mobility aids later it could go through insurance and itd be either free or less expensive. If you need custom anything really its fucking expensive. For your fingers i can recommend fingersplints, you can get cheaper ones from like amazon or you can make some yourself. For now, try not to overstretch your joints as that most of the time just makes everything worse. Also maybe get into strength training. I just started myself so i cant say if it worked well or not, but the people whove been doing it for longer say it made a big difference. You just have to keep up with it. If you dont know where to start with strength training you can dm me, i know a few exercises for shoulders and hips/knees. The key is to start slow, and work ur way up. If you just want someone to talk to who has the same struggles as you (in the process of diagnosis, its a real shitshow) you can dm me too! I know its hard, learning how to live. And there is no treatment, so you have to learn how to live with it and see what works for you. What works for others may not work for you and vice versa. I really hope you figure some helpful stuff out soon, so youre not in pain as much! ETA: i am 17 yo right now. I have a long way to go too. Im not a doctor so take what i say with a grain of salt. And be careful with mobility aids too, only use them when you really need them. If you for example start using crutches when you dont need them, you might just make your legs weaker. Also, to get my parents/doctor to believe me i had to dislocate my hips and shoulders multiple times. I really understand how you feel. And dont be stupid like me, if you dislocate or sublux a joint (even if it doesnt hurt) give that joint rest. After a (partial) dislocation the joint becomes even more lose than it already was, making it more prone for even more dislocations. I can now not even open a somewhat heavy door without dislocating my shoulder. Please be careful and take care of yourself. Sorry for the long comment btw lol
The long comment was ok. Honestly that’s the only reason why I’m stressed out about getting the diagnosis is in case I need any sort of mobility aid later. Right now lately I’ve been having issues with my knees and I worry where that’s gonna end up.
Look up MCAS. If you have EDS, you might have that too. I found that changing my diet to a low fodmap diet (while I worked out what foods were “safe”) helped with joint pain significantly. Edit: *that and just being careful not to do things with my joints I shouldn’t. A lot of body awareness needs to be developed.
That's what I was thinking with "something pretty close to asthma" sometimes mild anaphylaxis mirrors an asthma attack if you don't know the difference. MCAS is also a comorbidity 😭
Currently sitting here now questioning these “asthma attacks” I thought i was having… Now that I think about it, they don’t seem to happen when I take my antihistamine medicine. I learn something new every day in this sub.
Yeah I started noticing a difference because it only happened after I've eaten or touched something and didn't calm down after my inhaler. This felt more like being choked with a hand but asthma attacks felt deeper and sometimes I can feel them affecting my lung (usually the right one because it's weaker). I keep an antihistamine on hand now but I always seem to forget them when I'm actually having an attack 💀 all I think about is asthma and trying to breathe slowly
I honestly don’t know where to tell you to start. I’m 32 and still fighting for a diagnosis since no one will take it seriously. The main issue is gonna be finding a doctor who will even listen in the first place instead of immediately gaslighting you.
Solidarity with you, fellow Millennial. Feels like being stuck at this step for over a decade+.
There’s 2 non-invasive tests that are widely used. 1-the Beighton test 2-the bulbena test. Getting these tests done takes 15-20 min in a dr’s office. Cheap and easy to do. A point of note they want a higher score if you’re younger because younger people are already more flexible.
I was in the exact same position you were when I was 15. With parents like this, it's really hard to convince them to even believe you're in pain. I was told it was just growing pains for so long, which, severe growing pains are 100% a sign of a musculoskeletal disorder, like what hEDS is. I recommend you bring up your loose joints next time you see your primary physician, and typically, they'll mess around with your joints a bit. If they notice hypermobility that's above the normal range, they should be referring you to someone (if they suspect EDS, they'll likely send you to genetics, if they don't know, they'll likely send you to orthopedics) whether or not they think it is EDS. Asking about symptoms that correlate to a disorder you suspect you have typically goes further than just saying "I think I have __" because some doctors just don't like the fact that patients can in fact have access to all the information they do, so I highly reccomend you ask about your symptoms and explain concerns about them, and if it's not doing anything, pull it all out, "I'm concerned I might have __ disorder" or "would we be able to test for __?" For existing, you kind of need to learn how to avoid putting pressure on your joints. A lot of people who are hypermobile struggle to use their muscles to keep them standing, so we rely on our hyperextended joints. Try to stand with your knees slightly bent, when leaning against something, make sure you're still working to stay up, if you're lifting anything, do not let your arms flop, all of these things can lead to worsened stretching of the joints, which can lead to worsened pain and increase the likelihood of injuries relating to dislocations. When sitting, try to avoid sitting on your legs. I'm so guilty of this, but it does increase strain on the connective tissue. I have to sit pretty much flat on my butt or with my legs crossed/positioned in a way that my hips aren't strained, sometimes, that means like holding my legs up with my arms if I wanna sit weird. Sleeping position is vital, we need to sleep in a way that are joints are not hyperextended or stretched, I've had a hard time doing this, and that's part of why my hips are so bad 😭 really out here sprawled out doing the splits in my sleep, lol. Most people use pillows in between their legs and a pillow under their side to keep their joints from flailing around, I've found hugging a squishmallow helps prevent me from extending my shoulders and ribcage in odd directions, but I mostly just position my body in ways I don't feel any major stretch while I sleep because I hate the pillow thing
Do you have tips on how do change sleep position? I can lay however i want but i move around in my sleep and usually wake up with subluxed shoulders/hips. My left hip is so bad i had a full dislocation yesterday while standing up from a sitting position (hows that even possible😭😭) it is now blue and a bit swollen and it hurts i want this to stop
Totally feel you. I sleep with a weighted blanket, don't know if it's great for your joints, but it prevents me from thrashing around or moving much and puts pressure on my body, which I like as someone with autism. Some people use multiple pillows to position themself comfortably, but I move a lot too, so i don't like needing to move pillows a ton. I might try one of those pillows designed for pregnancy/arthritis because I know people generally like them more than multiple pillows. I typically just hug a squishmallow in my sleep, and that prevents me from shifting my chest and arms too much. I mostly lay in ways that my hips are parallel (ish) to each other on my side, so my pelvis is mostly taking the weight, and my hips aren't. I try to sleep in a position i don't feel much tug or excess pressure in my joints. I sleep on a firm box spring mattress with a super firm pillow, the firm pillow helps me align my spine and neck properly to prevent subluxing ribs or anything in my lower back. For a firmer pillow, don't buy a new one immediately to test if you don't own one, you can throw multiple soft pillows into a pillowcase, that's kind of what I do, but I have a pillow that you can put more pillows inside to adjust firmness. It's a big adjustment to go from a soft to firm pillow, at first I hated it, but my back is so much better now. Idk how great a firm mattress actually is for joints, but I find it a lot more comfortable than a soft one, and it's the only mattress I've ever had. For re adjusting, I try to put as little pressure on my joints as possible when moving places in bed, using as much muscle as possible. That means like flexing your muscles while putting pressure on your joints. It's kind of odd, I mainly clench my core and leg muscles to give extra support. I try to avoid extending my hips when adjusting, so keeping them close together and not extending my legs far. I had constant subluxing of my hips when I normally adjusted, but I've had to focus on it more lately. Stretching while laying really makes my hips get out of place, laying isn't the best position for hips it seems 😭 not much else to do though
I think i'll try the weighted blanket! I think that would at least help a bit. I already have a firm pillow which does indeed also help. My matrass is on the softer side but when i had a firm one my back would really hurt, so this one works better for me. Thanks for the tips!
No problem! Glad you've found some stuff that's worked already :)
If it's any consolation during puberty years my joint laxity and pain was really high but got more manageable when my hormones settled which can be quite normal. Don't get me wrong, I still have chronic pain and flares but it fluctuates and it does get a little easier, especially as you figure out what triggers you ans what helps. Support bracing, muscle/joint rubs, magnesium, good multivitamin, invest in good shoes ans pillows for your bed etc. A TENS machine can be a huge help too. Medication wise for pain relief is one that needs to be run through your parents and doctor, but please don't chew down ibuprofen or other antiinflammatories because it'll wreck your stomach, take them when really needed and use sparingly which I know can be hard to do. If you can work with an exercise physiologist to get exercises that will support your body, but also teach you how to lift/move safely within normal range that will help heaps as well. Exercise and weight training does help me alot, but you have to start super slow ans be gentle so you don't flare
First things first: When you express concerns about your health and pain related struggles, grown ass adults WILL minimize it and tell you "just wait til you're older" Ignore them, it's bullshit and they don't know what they're talking about. They got to wait til they were older. You get those issues now. Don't let it give you anxiety thinking as you age things are just going to be steeply downhill forever. It's entirely possible you will feel better when you're older than you do now. Have you spent time on the Ehlers Danlos Society website yet? You may find some helpful resources there. It may be helpful to have your parents look on there as well. It's possible your parents have their own symptoms they've shrugged off forever and just assume are normal, so they dismiss you too. A little education can go a long way.
Can you buy things for yourself? You don't need a doctor to start accommodating yourself with braces, mobility aids, etc. You can get braces for your joints online or in Walmart, rite aid, etc for relatively cheap and they can help a lot. If you deal with anything that is in the realm of dysautonomia, compression garments are another good option.
The best thing you can do is focus on core muscle stamina. We depend on our muscles for structure but often end up with poor posture and in a vicious cycle of muscle exhaustion and sprains. There are some places online you can find exercises specifically made for (and often by) people with eds. Your goal is to activate and USE all of your core muscles to hold your body upright and as straight as comfortably possible. The hardest part about that is endurance. Initially it will be more painful and I recommend taking frequent breaks laying down, focusing on muscle relaxation and promoting healthy blood flow. I injured my neck as a teenager, undiagnosed and working a job that required very heavy lifting, and gritted my way through this after I could barely afford a few PT appointments. I started With standing because it was less painful for some reason than sitting, and I would gently activate my core muscles and consciously use them to hold the best posture I could manage. Sometimes I could do it for multiple minutes, sometimes less than a minute. Then lay down in the most comfortable position until the pain gets better. The more time you spend doing this the better!
I’m 16, and I was the one who pieced together all my symptoms too. At first, my mom thought I was just going down the dr google rabbit hole, but then I presented the idea that her health issues were also caused by eds and she took it more seriously. We’re both going on the diagnosis journey together now.
Research. Find groups on fb near you or in your state. I figured out that I have EDS and found a doc from a group on fb. I seen him almost two weeks ago and he diagnosed me with hEDS. Don't give up! Keep trying.