For pain, a soak in a bathtub of very warm water with Epsom salts is a huge help! The magnesium from the Epsom salts can absorb through the skin to help the joints. (If you have dysautonomia or POTS with your EDS, be very careful with the abrupt increase in temperature, as that can aggravate it.) KT tape, the kinetic tape that gymnasts use can be really helpful. For EDS people with especially sensitive skin, there's a special kind of KT tape that has weaker adhesive. To combat EDS dysautonomia and POTS, the compression calf sleeves that marathon runners and triathletes use can be very helpful.
It's really interesting to hear people's different experiences with EDS! For me, I don't get dislocations (maybe sometimes some subluxations), but it's like my muscles do too good of a job keeping everything together because I have really bad muscle tension that causes me many problems and pain and I have early onset bilateral knee osteoarthritis (diagnosed at 22) from the excessive wear and tear this puts on my knees. I definitely like the small exercises and for me I get really dizzy so I take salt supplements. Thanks for sharing your tips!
I’m 22 and I believe I have this. I feel like I have arthritis, my entire body is always in severe pain, especially when I am on my bed leaning on my elbow
I'm currently researching EDS as I am chasing a diagnosis and this video turned up in my recommended :) surprised your channel is so small, yet this was so professional looking! I'd love to know what type of EDS you have and how long it took you to get diagnosed
I am in the same boat as you then :) When I look at the criteria for Classical and Hypermobile EDS Then it looks like I am passing just enough critera for both types.
Wow! I have EDS and Epilepsy too! I have some other diagnoses but I've never met anyone with epilepsy and EDS before! I was also a gymnast before I got symptomatic
I’m Epileptic and I have EDS, too! I have read where experts are trying to tie Epilepsy with EDS. I don’t know how accurate that is , but it seems like it could be a possibility that it is a comorbidity.
I have Epilepsy and EDS, the type of EDS that I have is the Classical type. My Neurologist is the one who diagnosed me. I use a cane as my daily mobility aid. I do have a Rolling walker that has a seat on it that I can use if I need to take a break from walking. The only medication I can take is Naproxen because I take AED’s and they interact with so many different medications.
I discovered this with the progesterone only pill!! I'm told I can't take the combined pill because of my migraines, and they even higher risk of blood clots and stroke. Also my migraines with aura were almost constant every day so we took me off it to try and stop them which I think worked because I haven't had one since. But I also ice my head every night. Then, being on the progesterone only pill, my mobility has fallen through the roof I can hardly walk and I have sustained injuries. If I come off the pill my mental health suffers and drastically changes. So what is the viable option for the people like us? 😌
My daughter has had epilepsy since 6 weeks old, she is now 37, in a wheelchair and has today been diagnosed with EDS. She is in so much pain and they are now limiting her painkillers and trying to get her to exercise, she just comes home crying and goes to bed.
my partner ordered me a low cost temporary wheelchair for me today. i'm working on getting diagnosed with EDS, my knees are the worst with both joint pain and dislocation. i think it will really help, but i'm also faced with the battle of how ambulatory wheelchair users are seen, especially being young, and i worry that i'll be seen as dramatic. i have lots of plans for this summer for out and about, so i needed it and i'll have to get over that.
I hope this wheelchair helps you! I struggle with the same mentality as you with not knowing how I’ll be viewed but ultimately if the wheelchair helps you then try your best to focus on that and not what other people think x
I was recently diagnosed with hEDS and have been begging my mom to let me use a wheelchair for shopping but I just get told I can walk and deal with the pain so you have any advice for handling this situation
@@countrygirlsstopanimationw6928 thankfully I’ve recovered some so I’m not in as much pain but crutches tear my skin open and create horrible sores for me
Dad comment. Oestrogen tightens the joints, Progesterone loosens them. At some point in the monthly cycle they cross over which makes EDS worse. Get a pill which keeps them balanced. P.S. Boys tend to get EDS less because of their testosterone. Right....that's hormones done! ;)
Boys still get EDS, but it is masked by testosterone and more muscle mass. Testosterone doesn't prevent EDS, since genetics are independent of hormones.
This is worth knowing, although for me the hormones did really help and have continued to have an impact on the quality of my day to day life. I was told by specialists that eds doesn’t show in men because of their testosterone so it’s a good point that you’ve brought up!
@@SmallandStrong66 Thanks! I'm a boy with hEDS. I also have a pituitary tumor that caused me to have low testosterone, which is a cruel combination. The tumor also causes acromegaly (high growth hormone), and the larger bones and body mass is another layer of evil.
Naproxen are really bad for you, they can cause kidney failure and ulcers. Codeine are actually safer. I have EDS and I've had so many operations on different joints but I've had sciatica for 33 years. I've just discovered that HRT with the coil has made a huge difference to my pain. Hormones play a massive part in EDS pain.
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Thanks for all the tips
For pain, a soak in a bathtub of very warm water with Epsom salts is a huge help! The magnesium from the Epsom salts can absorb through the skin to help the joints. (If you have dysautonomia or POTS with your EDS, be very careful with the abrupt increase in temperature, as that can aggravate it.)
KT tape, the kinetic tape that gymnasts use can be really helpful. For EDS people with especially sensitive skin, there's a special kind of KT tape that has weaker adhesive.
To combat EDS dysautonomia and POTS, the compression calf sleeves that marathon runners and triathletes use can be very helpful.
I agree but it only helps for like a hour for me. I did find a gel epsom salt that I rub on
It's really interesting to hear people's different experiences with EDS! For me, I don't get dislocations (maybe sometimes some subluxations), but it's like my muscles do too good of a job keeping everything together because I have really bad muscle tension that causes me many problems and pain and I have early onset bilateral knee osteoarthritis (diagnosed at 22) from the excessive wear and tear this puts on my knees. I definitely like the small exercises and for me I get really dizzy so I take salt supplements. Thanks for sharing your tips!
I’m 22 and I believe I have this. I feel like I have arthritis, my entire body is always in severe pain, especially when I am on my bed leaning on my elbow
I would recommend having a chat with your doctor
I'm currently researching EDS as I am chasing a diagnosis and this video turned up in my recommended :) surprised your channel is so small, yet this was so professional looking! I'd love to know what type of EDS you have and how long it took you to get diagnosed
I am in the same boat as you then :) When I look at the criteria for Classical and Hypermobile EDS Then it looks like I am passing just enough critera for both types.
Wow! I have EDS and Epilepsy too! I have some other diagnoses but I've never met anyone with epilepsy and EDS before! I was also a gymnast before I got symptomatic
hi! this is random but i also have epilepsy and eds
Yo I was a gymnast too. Then shit started hurting a lot and I got diagnosed with heds and fibromyalgia
I’m Epileptic and I have EDS, too! I have read where experts are trying to tie Epilepsy with EDS. I don’t know how accurate that is , but it seems like it could be a possibility that it is a comorbidity.
I have Epilepsy and EDS, the type of EDS that I have is the Classical type. My Neurologist is the one who diagnosed me. I use a cane as my daily mobility aid. I do have a Rolling walker that has a seat on it that I can use if I need to take a break from walking. The only medication I can take is Naproxen because I take AED’s and they interact with so many different medications.
I take naproxen too! I take codeine also though and luckily that hadn’t affected me so far.
@@SmallandStrong66 I’m allergic to codeine .
I am terribly enjoying your beautiful accent. Greets from Spain!
Thank you it's nice to know you're not alone
I discovered this with the progesterone only pill!! I'm told I can't take the combined pill because of my migraines, and they even higher risk of blood clots and stroke. Also my migraines with aura were almost constant every day so we took me off it to try and stop them which I think worked because I haven't had one since. But I also ice my head every night. Then, being on the progesterone only pill, my mobility has fallen through the roof I can hardly walk and I have sustained injuries. If I come off the pill my mental health suffers and drastically changes. So what is the viable option for the people like us? 😌
My daughter has had epilepsy since 6 weeks old, she is now 37, in a wheelchair and has today been diagnosed with EDS. She is in so much pain and they are now limiting her painkillers and trying to get her to exercise, she just comes home crying and goes to bed.
Have you tried a tens machine? My OT recommended one so got one and I think it's making it worse 😅
my partner ordered me a low cost temporary wheelchair for me today. i'm working on getting diagnosed with EDS, my knees are the worst with both joint pain and dislocation. i think it will really help, but i'm also faced with the battle of how ambulatory wheelchair users are seen, especially being young, and i worry that i'll be seen as dramatic. i have lots of plans for this summer for out and about, so i needed it and i'll have to get over that.
I hope this wheelchair helps you! I struggle with the same mentality as you with not knowing how I’ll be viewed but ultimately if the wheelchair helps you then try your best to focus on that and not what other people think x
I was recently diagnosed with hEDS and have been begging my mom to let me use a wheelchair for shopping but I just get told I can walk and deal with the pain so you have any advice for handling this situation
Have you tried crutches? I use them almost Daily
@@countrygirlsstopanimationw6928 thankfully I’ve recovered some so I’m not in as much pain but crutches tear my skin open and create horrible sores for me
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Dad comment. Oestrogen tightens the joints, Progesterone loosens them. At some point in the monthly cycle they cross over which makes EDS worse. Get a pill which keeps them balanced. P.S. Boys tend to get EDS less because of their testosterone. Right....that's hormones done! ;)
Boys still get EDS, but it is masked by testosterone and more muscle mass. Testosterone doesn't prevent EDS, since genetics are independent of hormones.
This is worth knowing, although for me the hormones did really help and have continued to have an impact on the quality of my day to day life. I was told by specialists that eds doesn’t show in men because of their testosterone so it’s a good point that you’ve brought up!
@@SmallandStrong66 Thanks! I'm a boy with hEDS. I also have a pituitary tumor that caused me to have low testosterone, which is a cruel combination. The tumor also causes acromegaly (high growth hormone), and the larger bones and body mass is another layer of evil.
That's interesting because I mostly hear about girls who have EDS.
When you can't take pain killers😞
Naproxen are really bad for you, they can cause kidney failure and ulcers. Codeine are actually safer. I have EDS and I've had so many operations on different joints but I've had sciatica for 33 years. I've just discovered that HRT with the coil has made a huge difference to my pain. Hormones play a massive part in EDS pain.
First✌