• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Worsening of symptoms in lying position

Messages
33
Location
Russia
Hi, guys!

Did you ever notice that your symptoms of CFS/ME became worse in lying position? I always feel this way: when I lie down, especially after eating, I start to experience an immediate worsening of my flu-like symptoms. I feel like I have a influenza with fever, but my body temperature is normal. I may start to feel shaky, agitated, not able to continue to lay. In the beginning I went to bed with full stomach a few times, I woke up a few hours later shaky with tachycardia (120 bpm). I felt like I was gonna have a heart attack or something. It always slowly goes away in the sitting position. This symptom was my first one, I developed it about 10 years ago before I got all classic symptoms of CFS/ME. I'm pretty sure it's a part of the illness. I never lie down now until my stomach is empty. Is anybody here with the same feeling?

Thank you and Happy New Year to all:)
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
it could be reflux----that can seem like a heart problem or breathing problem sometimes, it feels like that---better not to lie down after eating much

another thing is Dr Cheney talked about how lying down makes most CFS folks feel better but there are conditions where lyiing down aggravates b/p etc and makes you feel worse instead of better
I used to have that sometimes when using a certain medication because it effected heart and b/p


here i found the essay---need to read the whole thing to make sense but he addresses yr thing towards bottom of page "preload lying down"

http://www.dfwcfids.org/medical/cheney/heart04.part2b.htm
 
Messages
15
Hello Ekaterina,

I sleep sitting upright in a chair. It's not really comfortable, but more so than lying down flat, which makes me feel like I can't breathe. You can get used to it.

I have multiple reasons (maybe having nothing to do with CFS/ME) and each person is individualistic in how they sleep anyway.

A long time ago I slept lying down flat and I kept waking up choking and in a panic after about age 30. (Probably sleep apnea but the at-home test TAKEN WHILE SLEEPING UPRIGHT showed nothing.)

I have the funny feelings of too much heat too. Often I feel that I'm burning hot on the inside when objectively my skin on the outside is cool to the touch. All I can figure on that is that it's known that I have poor circulation and I suppose the skin is there just waiting for the heat that never gets to it to be dissipated. On the other hand, my temp is almost always some variety of below normal - an indication of hypothyroidism, which I also do have.

I can't take heat at all, and never was very good with heat from day 1. The thermostat is set at about 68 degrees F (20 degrees Celsius) all year around.

Sitting upright strikes my doctors as an unfortunate way to have to sleep. I'm glad I'm not the only one who's "odd" but I'm sorry for your sleeping problems, Ekaterina. I figure that there are a few of us around, or they'd not be making money selling people beds that sit upright with the feet that go up too. A specialized bed works until you get to the point where you cannot get in and out fast enough sometimes and then you move to a chair. Good luck.

Best wishes, Mary
 

SK2018

SK
Messages
239
Location
Asia wide + UK
Hello Ekaterina,

I sleep sitting upright in a chair. It's not really comfortable, but more so than lying down flat, which makes me feel like I can't breathe. You can get used to it.

I have multiple reasons (maybe having nothing to do with CFS/ME) and each person is individualistic in how they sleep anyway.

A long time ago I slept lying down flat and I kept waking up choking and in a panic after about age 30. (Probably sleep apnea but the at-home test TAKEN WHILE SLEEPING UPRIGHT showed nothing.)

I have the funny feelings of too much heat too. Often I feel that I'm burning hot on the inside when objectively my skin on the outside is cool to the touch. All I can figure on that is that it's known that I have poor circulation and I suppose the skin is there just waiting for the heat that never gets to it to be dissipated. On the other hand, my temp is almost always some variety of below normal - an indication of hypothyroidism, which I also do have.

I can't take heat at all, and never was very good with heat from day 1. The thermostat is set at about 68 degrees F (20 degrees Celsius) all year around.

Sitting upright strikes my doctors as an unfortunate way to have to sleep. I'm glad I'm not the only one who's "odd" but I'm sorry for your sleeping problems, Ekaterina. I figure that there are a few of us around, or they'd not be making money selling people beds that sit upright with the feet that go up too. A specialized bed works until you get to the point where you cannot get in and out fast enough sometimes and then you move to a chair. Good luck.

Best wishes, Mary
Wow you can't even get salvation of rest in bed sleeping upright sucks so much.
I have to sleep on my side flat will make me choke ,sounds like your symptom is due to a form of brainstem dysfunction.