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Hi everyone, my name is Lee.
Let me start by saying the only thing I’ve been formally diagnosed with is fibromyalgia many years ago, though I always thought was just a guess since my body is sore where ever its touched and not just specific points. To my knowledge, I do not have EDS. No stretchy skin, no hypermobile joints. I don’t fit the widely touted classic look of someone with EDS of tall, blonde, and slender (polar opposite actually lol) and nobody could ever accuse me of being a perfectionist or an over achiever.
I’m pretty sure I have POTS, though I don’t know what kind. I get adrenaline rushes when standing, my heartrate goes up to around 140 and my blood pressure gets scary high. Laying down it will be 128/73, sitting is a little higher but within a minute of standing 180/120 with the high heartrate. The longer I stand the higher it goes with chest pain, a squeezing pressure in my brain/head until I either sit down or fall down. My understanding is you can have adrenaline rushes and yet not have hyper pots. I also have slow gastrointestinal motility from esophagus to exit. I’ve had esophageal candidiasis off and on for years, a hiatal hernia, gerd and horrible constipation. Metabolic syndrome. Numbness and tingling in hands, feet, and calves occasionally. Plus, just general muscle weakness in arms and legs.
Anyway, I’ve read Dr. Diana’s interview with the Low Histamine Chef in addition to watching the videos on you tube regarding vagus nerve issues. It was very interesting how Dr. Diana used a nicotine patch to produce a bowel movement. I’ve often wondered if my vagus nerve was affected in some way but here is my issue. I smoke (yes, nasty habit) and I get plenty of nicotine per day. Does this essentially mean that vagus nerve problems are not an issue for me, or perhaps my nerve is overstimulated?
I live in a small town with less than stellar doctors. Say POTS or dysautonomia to them and they look at you like you have 2 heads and say to stay off the internet and quit looking for made up diseases. They tell me I’m just fat and out of shape, which is true but the POTS thing is what slowed me down. I used to love to hike, and nature walk, even being fat. Now I find it difficult to even get out of bed. They tell me I’m depressed and have an anxiety disorder, but their magic meds make me actually feel crazy. Who wouldn’t panic when standing up causes all this chaos , and who wouldn’t be depressed being basically bed bound? But I know which came first and it wasn’t anxiety or depression. They have managed to convince my family that I’m a headcase however
I would appreciate any input or ideas anyone has. Other than stop smoking because I already know that 🙂 Thank you!
Thank you MJ. I’ve been browsing for a while and it has been so interesting. Still hoping someone will chime in with an answer, or a theory on my original post. Have a great day! 🙂
Hi Lee,
Just wondered, have you tried Magnesium, or B vitamins for your slow gut motility? Dr Diana has a video on Magnesium, if you want a place to start.
Barbara
(UK)Hi Lee,
Just wondered, have you tried Magnesium, or B vitamins for your slow gut motility? Dr Diana has a video on Magnesium, if you want a place to start.
Barbara
(UK)Hello Barbara,
Thanks for your reply. I have seen that video and I used to take many vitamins and minerals years ago. They did help at that time but seemed to lose their punch after a while. Now I only use magnesium as in milk of mag when I get desperate. It’s interesting that you mentioned the B vitamins, as I have been studying them the last few weeks. Thiamine in particular. The list of deficiency symptoms for the various B’s is astounding. Maybe they are worth another try. I appreciate your suggestion. Have a wonderful day!
Lee
“To my knowledge, I do not have EDS. No stretchy skin, no hypermobile joints. I don’t fit the widely touted classic look of someone with EDS of tall, blonde, and slender (polar opposite actually lol)”
“Laying down it will be 128/73, sitting is a little higher but within a minute of standing 180/120 with the high heartrate. The longer I stand the higher it goes”
“Numbness and tingling in hands, feet, and calves occasionally. Plus, just general muscle weakness in arms and legs.”
“They tell me I’m just fat and out of shape, which is true but the POTS thing is what slowed me down.”
“Who wouldn’t panic when standing up causes all this chaos and who wouldn’t be depressed being basically bed bound? But I know which came first and it wasn’t anxiety or depression. They have managed to convince my family that I’m a headcase however”
No probs Lee. I have been diagnosed with EDS but it’s not blatant. I have taken the above extracts from your original post, as they could even be talking about me, as I have experienced the same. I’m sure there are many on here who could also say that. You are not alone and we seem to be growing in numbers!
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