I’ve always described it as a “half sleep” like, not awake, but not fully asleep. There was literally only one time in my life I remember waking up feeling refreshed. I remember waking up and feeling like crying because for once I woke up feeling amazing and not more tired.
Amazing. It’s hard to keep trying with doctors anymore. It’s amazing to see this level of insight and it’s like we can only hold on and wait for the next generation of doctors to be better educated on these things. Thank you so much for stepping up to make a difference.
My PCP to this day still doesn't know my diagnosis. She's the one that referred me to a geneticist,where I received my diagnosis. I've seen her 4 times since and I've had to explain it every time
Orthostatic response wonkiness and over correcting ... Anyone here remember the game “Asteroids” and going overboard with the thruster ? My mental image of me in every aspect from standing and stabilizing, to walking down (or UP 🤣) stairs.
Has anyone researched Thoracic Outlet Syndrome (blood vessel being compressed in thoracic region, by various causes). YT channel, TOS MRI has many educational videos about TOS which has been a controversial diagnosis for last 10 yrs. It has lots of symptoms similar to orthostatic intolerance, headaches, painful use of arms and legs. I just discovered the syndrome which does have treatment. They say after treatment, far less pain and many ppl regain function of their limbs again. Please see if it fits anything with you or anyone you know. There is no research literature linking EDS and TOS...I assume because everyone has a hellish time getting diagnosis of either disease.
All of this is great, solid help. *BUT*, many of these solutions are unavailable to me because I have Chronic Kidney Disease. And EDS caregivers usually don't know how to deal with CKD, and nephrologists know nothing about EDS. So I'm really stuck.
Hi Laura, do contact our helpline team who can advise and offer support, and suggest any alternatives for you that they are aware of: www.ehlers-danlos.com/eds-helpline/
Yep just do nothing and let your muscles waste. Personally I roll a fat one, and hope to get some relief, and pace myself, doing one thing a day. If I have to go out, I need a weeks rest before and after. I have KEDS and cannabis is the only thing that has ever helped me cope.
@@gabbiebarnard7580 I'm not sure if you were intending to be snarky or not ... 🤷🏽♀️ This is such a hard road, for all of us and kindness goes a long way. I, too, have started to find relief and inflammation and fatigue management in cannabis. I started dry herb vaping low THC high CBD cannabis and it has been a tremendous help for me. Best wishes to you.
Sorry if my British humour came across as snarky. I call it sarcasm but it wasn't meant in a mean way It's a pain to do nothing as much as it is doing something. So finding a balance is key. Muscle waste means you'll get more muscle pain and spasms from lying in bed doing nothing. So gentle exercise like tai chi or mediative yoga is best done daily. I lay down medicate and meditate that I'm doing sit ups, push ups and a few burpies. Your muscles believe that you have exercised even if you have only imagined it. Take care xx
@@allisgrace1313 No matter what you do, this condition sucks and life is pain. I'd like one of those suicide pods, like in Futurama some days, I'd pick fast and painless, because I've suffered slow and painful for 36 year. 😂❤️
Andrea Wisner links? I'm in the medical profession and this is standard with low Vit D levels and the comorbid associations with low Vit D levels is staggering. Blessings
@@LiLFyrecracker74 Steroids killed my left knee, the first time I damaged it doing yoga at 21. It took years for it to heal to an acceptable level. The steroids made it worse.
I’ve always described it as a “half sleep” like, not awake, but not fully asleep. There was literally only one time in my life I remember waking up feeling refreshed. I remember waking up and feeling like crying because for once I woke up feeling amazing and not more tired.
I relate to this, too! It's been frustrating trying to figure out how I was able to do that, in order to repeat it.
make sure you get good nutrition daily. it really helps
I relate so much to this 😩 have you found any tricks to helping this??
Amazing. It’s hard to keep trying with doctors anymore. It’s amazing to see this level of insight and it’s like we can only hold on and wait for the next generation of doctors to be better educated on these things. Thank you so much for stepping up to make a difference.
We’re our own doctors, aren’t we?
So true 👍🙏
@@BD-to6md too bad we cannot write our own radiology orders etc…..
My PCP to this day still doesn't know my diagnosis. She's the one that referred me to a geneticist,where I received my diagnosis. I've seen her 4 times since and I've had to explain it every time
Yes. The burn out is real.
Thanks for this info it really helps to know this with going to a pain management psychologist
Orthostatic response wonkiness and over correcting ...
Anyone here remember the game “Asteroids” and going overboard with the thruster ?
My mental image of me in every aspect from standing and stabilizing, to walking down (or UP 🤣) stairs.
Thank you. Helpful and compassionate information.
Very good presentation, thank you.
Has anyone researched Thoracic Outlet Syndrome (blood vessel being compressed in thoracic region, by various causes). YT channel, TOS MRI has many educational videos about TOS which has been a controversial diagnosis for last 10 yrs. It has lots of symptoms similar to orthostatic intolerance, headaches, painful use of arms and legs. I just discovered the syndrome which does have treatment. They say after treatment, far less pain and many ppl regain function of their limbs again. Please see if it fits anything with you or anyone you know. There is no research literature linking EDS and TOS...I assume because everyone has a hellish time getting diagnosis of either disease.
Great talk...thank you!
Thank you.
All of this is great, solid help. *BUT*, many of these solutions are unavailable to me because I have Chronic Kidney Disease. And EDS caregivers usually don't know how to deal with CKD, and nephrologists know nothing about EDS. So I'm really stuck.
Hi Laura, do contact our helpline team who can advise and offer support, and suggest any alternatives for you that they are aware of: www.ehlers-danlos.com/eds-helpline/
Same here. Ive had a transplant but its hard to know what to do. It makes you feel so lost x
So self take care of this fatigue means doing like nothing...cuz every single thing I do is pushing through fatigue to do it... lol
Yep just do nothing and let your muscles waste. Personally I roll a fat one, and hope to get some relief, and pace myself, doing one thing a day. If I have to go out, I need a weeks rest before and after. I have KEDS and cannabis is the only thing that has ever helped me cope.
@@gabbiebarnard7580 I'm not sure if you were intending to be snarky or not ... 🤷🏽♀️ This is such a hard road, for all of us and kindness goes a long way.
I, too, have started to find relief and inflammation and fatigue management in cannabis. I started dry herb vaping low THC high CBD cannabis and it has been a tremendous help for me. Best wishes to you.
Sorry if my British humour came across as snarky. I call it sarcasm but it wasn't meant in a mean way It's a pain to do nothing as much as it is doing something. So finding a balance is key. Muscle waste means you'll get more muscle pain and spasms from lying in bed doing nothing. So gentle exercise like tai chi or mediative yoga is best done daily. I lay down medicate and meditate that I'm doing sit ups, push ups and a few burpies. Your muscles believe that you have exercised even if you have only imagined it. Take care xx
@@gabbiebarnard7580 👍🏽 ❤️
@@allisgrace1313 No matter what you do, this condition sucks and life is pain. I'd like one of those suicide pods, like in Futurama some days, I'd pick fast and painless, because I've suffered slow and painful for 36 year. 😂❤️
Watching this at 4 am, despite being exhausted, because I cannot sleep. Pull a ligament on left leg SWIMMING!
I love this guy! He is a straight up nerd hotty, “the best solution, no pun intended.....”
He's recommending a level of vitamin D supplementation way above what has been determined to be dangerous. Is he not aware of recent research?
Andrea Wisner links? I'm in the medical profession and this is standard with low Vit D levels and the comorbid associations with low Vit D levels is staggering. Blessings
Recent studies show that vitamin D is non toxic even in very high doses.
That's the standard amount prescribed to get you out of severe deficiency. Then you drop it to a "normal" amount.
Why is this guy recommending steroids such as prednisone to EDS suffers? Which is poison to people with EDS!
No it's not.
@@LiLFyrecracker74 Steroids killed my left knee, the first time I damaged it doing yoga at 21. It took years for it to heal to an acceptable level. The steroids made it worse.