Alan Pocinki - Evaluation and Management of Fatigue in Patients with EDS

Рет қаралды 15,442

5 жыл бұрын

Alan Pocinki discusses how to evaluate and manage the fatigue that can accompany Ehlers-Danlos syndrome, at the 2018 EDS Global Learning Conference in Baltimore. The slides used are available in PDF from bit.ly/2018ConBaltimore

Пікірлер: 45

@AnaGfit23 3 жыл бұрын

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.

@Dulcimerist 2 жыл бұрын

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.

@saturationstation1446 Жыл бұрын

make sure you get good nutrition daily. it really helps

@robvallee 5 жыл бұрын

I've learned more about my EDS here, than from my last 3 rheumatologists.

@pattyhuntley1201 5 жыл бұрын

In Orange County California the Rheumatologists only work on Osteo and Rhumatoid arthritis. I manage all of my Drs and I totally agree with the Dr! I would love to have someone else to manage all of this but I’m not sure I would trust them! Lol

@jno805 5 жыл бұрын

I wish we could put together a "doctors guide to eds" that eds patients could print out and take to their uneducated doctors

@Dulcimerist 2 жыл бұрын

@@jno805 The Ehlers Danlos Society has a bunch of guides for doctors, categorized by each area of the body that EDS affects. Check out their website. :)

@Shredzebra 5 жыл бұрын

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.

@BD-to6md 5 жыл бұрын

We’re our own doctors, aren’t we?

@malinichandra6953 3 жыл бұрын

So true 👍🙏

@claire5399 2 жыл бұрын

@@BD-to6md too bad we cannot write our own radiology orders etc…..

@bterrell40 Жыл бұрын

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

@LiLFyrecracker74 Жыл бұрын

Yes. The burn out is real.

@julieshenk7640 3 жыл бұрын

Thank you. Helpful and compassionate information.

@allisgrace1313 5 жыл бұрын

Great talk...thank you!

@melloyellow5598 4 жыл бұрын

Thank you.

@nebelungpixie9373 4 жыл бұрын

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.

@sarahturnbull7610 7 ай бұрын

There’s new research coming out soon that shows many patients with EDS have low blood flow to the brain (cerebral hypoperfusion), even those who don’t have POTS. It is from Brigham and Women’s Hospital and was discussed at the 2023 Dysautonomia International confeence. You can get tested for cerebral hypoperfusion by having transcranial Doppler ultrasound in conjunction with a tilt table test.

@kateanderson7782 3 жыл бұрын

Thanks for this info it really helps to know this with going to a pain management psychologist

@kimleon-guerrero9980 5 жыл бұрын

Very good presentation, thank you.

@maryr7593 Жыл бұрын

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.

@user-mo6dt9lw7g Жыл бұрын

Watching this at 4 am, despite being exhausted, because I cannot sleep. Pull a ligament on left leg SWIMMING!

@irisgreene4175 4 жыл бұрын

I love this guy! He is a straight up nerd hotty, “the best solution, no pun intended.....”

@Liutgard Жыл бұрын

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.

@TheEhlersDanlosSociety Жыл бұрын

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/

@Mammy-dh4dn Жыл бұрын

Same here. Ive had a transplant but its hard to know what to do. It makes you feel so lost x

@allisgrace1313 5 жыл бұрын

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

@gabbiebarnard7580 2 жыл бұрын

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.

@allisgrace1313 2 жыл бұрын

@@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.

@gabbiebarnard7580 2 жыл бұрын

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 2 жыл бұрын

@@gabbiebarnard7580 👍🏽 ❤️

@gabbiebarnard7580 2 жыл бұрын

@@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. 😂❤️

@andreawisner7358 4 жыл бұрын

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?

@GodListens77 4 жыл бұрын

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

@gabbiebarnard7580 2 жыл бұрын

Recent studies show that vitamin D is non toxic even in very high doses.

@LiLFyrecracker74 Жыл бұрын

That's the standard amount prescribed to get you out of severe deficiency. Then you drop it to a "normal" amount.

@adrianselder7924 2 жыл бұрын

Why is this guy recommending steroids such as prednisone to EDS suffers? Which is poison to people with EDS!

@LiLFyrecracker74 Жыл бұрын

No it's not.

@user-mo6dt9lw7g Жыл бұрын

@@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.