Alan Pocinki - Evaluation & Management of Fatigue in EDS/HSD
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- Опубліковано 6 бер 2019
- Many individuals with EDS/HSD live with debilitating fatigue. Dr. Alan Pocincki presents an overview of many of the common factors contributing to fatigue in people with EDS/HSD, and how best to assess and test. He also provides an overall approach to treatment, and discuss specific details for the treatment of many common causes of fatigue.
I am floored...this explains my cocktail of meds, supplements, sleep study results, etc and reaffirms my belief that I have hEDS. I just need to find a doctor who understands all of this and can evaluate me.
I really appreciate these being made available on UA-cam....thank you!
The term "depression" is over-used. There is a difference between a depressed mood and an actual mood disorder. It is too bad the same word is used interchangeably because it confounds discussion and inquiry into various clinical profiles of illness. There is also a difference between endogenous and exogenous depression. It's also important to recognize that not everyone with EDS/HSD has depression in the cycle diagram that Dr. Pocinki first showed. We simply do not understand enough about different forms of depression to only discuss neurotransmitters as the responsible parties for depression. This entire dialogue about mental health and physical health will change in years to come, science just doesn't know enough...other than they are somehow related.
I concur!
Agreed. A depression diagnosis usually brings a cookie cutter "one size fits all" approach to managing it, including typical antidepressants which can often aggravate and worsen the dysautonomia and other issues that EDS/HSD patients experience.
I have to say the last few years have been eye opening for me. My diet change to a plant based diet changed everything for me my depression is actually gone after 10 years, my joint pain is very diminished, it's definitely worth a try.
i have to agree going vegan has changed my life & especially my stomach problems. Not a total fix by anyyy means but so helpful for us i think. And it’s also good for our earth and animals so it’s a win win :)
Yes my stomach has been so much happier since the switch!
The Vegan Wallflower me too. The plant based diet made the biggest change to my energy levels. It hasn’t fixed everything, but definitely way more steady energy and not getting such dramatic crashes.
Not vegan but much more dairy free and GLUTEN FREE!!!!! That did the trick and my guts are much better for it.
It's helped me greatly, significantly reducing pain symptoms and digestive problems.
Thank you so much for sharing this!
Not very far in but a bit irritated to him using tired and fatigue interchangeably. I wish I was tired! Being tired wouldn't make it so that I'm couch bound for 2 weeks as I am right now!
all.is.grace Exhaustion is also more like it....
Thank you 🙏🏻
I was hoping this would be fatigue focused. It’s so much about pain, but I don’t have pain. Barely ever. At least, not enough that inteferes with sleep. I do have fatigue for most of my adult life.
Nobody seems to address sleep disorders such as delayed sleep disorder, advanced sleep disorder. If your natural sleep cycle is going to sleep at 4am and waking at 2pm and you are trying to work a first shift schedule, obviously there is a conflict. As one will not be able to sleep at 'normal sleep times' and then you will have a major difficulty getting up when you are supposed to. Trying to shift my circadian rhythm back to first shift schedule with melatonin didnt work. At the time, I had flexibility in my schedule that allowed me to 'lean into the natural sleep cycle'. I could sleep fine during my night owl schedule and it came down to giving up fighting it. It is relatively disruptive with making daytime appointments or getting things done that are only open daytime hours. Sleep dr said most ppl with these sleep disorders can successfully move the schedule to adjust to work schedule but as one gets older, it seems more difficult. Time changes for me were more and more difficult as I got older. Most people are not cognizant of their natural sleep cycle when they are attempting to decide upon a field of study for a career, etc. Be aware if you have one of these disorders, the lab DOES have daytime sleep studies. I never knew this for many months while seeing a sleep dr....trying to shift my circadian rhythm so I could possibly sleep at night for a study. However, most sleep study labs only have ONE daytime study per week. So getting into the schedule can be lengthy. If the sleep drs have more ppl with these issues, hopefully, they can schedule more daytime studies. Take ear plugs because it will be a normal daytime dr office atmosphere except that the room is supposed to have more sound proofing.
I have sleep apnea and I have tried for 5 years every mask you can possibly try and the pressure from the machine makes me congested and I can’t breath. Mast cell activation occurs always. I’m trying to get my doc to at least help me get a ge toe oxygen machine but she keeps saying that most likely insurance won’t cover it. 😢even though no one has tried to advocate for me. Any ideas? 🤕🙏🏼🦓
How does Covid “longhauler” symptoms affect and compare to EDS, etc… 8:21
Really great Info. Though when I sleep deep, I end up crushing my face or shoulder.. I can't sleep on my back. So I use Cannabinoids to help me sleep.
Do you have any medical documentation on the benefits of testosterone for EDS that I can give my doctor. She was asking for any medical documentation.
I think it's Dr P's opinion. Not many agree.
@@kathydobbs9850 I got my doctor to try it on me and it helped so much she let me 21 yr daughter try and it helped her so much. My youngest wants to try but we have not asked yet. I am just thinking there may be something to this. They found Oxytocin in pregnant marfan women was the cause of arterial dissection not the labor itself. I noticed progesterone makes me bruise all over and get worse. So have stopped that. If you know of any studies or information please let me know
@@CynthiaCampbell0316Would you mind sharing what improvements and what dose with the testosterone? I bruise all over anyhow..it is common with hEDS.
My endocrinologist recommended testosterone injections for me because my level was so low, but she was on the other side of the country and couldn't administer it and my local doc wasn't comfortable with the idea and said it would just make me angry. 😣
@@kathydobbs9850 Well the first thing was my veins do not burst as often. Before i looked like I had been beaten all over all the time and I hurt. Just had bruises every where. If someone barely touched me I bruised. Couldn't be hugged. I gained more muscle which has helped. seem to be dislocating less. But the bruising is way better. I am still on Low T...compounded at Innovations compounding in GA I think.
13:45 - he forgot to mention chiropractic.
Talk slower.
You can change the playback speed with the gear icon in the upper right hand corner of the video.