PEM in bed first thing in the morning. Anyone? What about PEM busters?

[Therunningman]

hey guys just wondering how many of us get a pem first thing in the morning. For me I wake at 6 am and go to the bathroom. When I get back in bed, the energy I just used quickly drops and my arms get weak, nausea, sweats, hot and cold, fatigue. PEM. I will be like this until 6-8pm before energy returns. The next day I wake up fine with energy.

This cycle repeats. And it sucks. My guess is during the night my energy is dropping or from the previous days exertion, and following morning any kind of exertion (even stretching) will trigger my PEM.

Any PEM busters or shield I should try?

I am mostly bed-bound.

Thanks! Steve

 

[Wayne]

Any PEM busters or shield I should try?

Hey Steve,

Here's a thread you definitely need to check out. It's a gold mine for information on PEM busters.

Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)​

 

[Mary]

@Therunningman - that definitely sounds like PEM, "post-exertional" malaise. I don't think the stretching triggers it - you've already overdone it the day before, so it's there, and you just start to feel it when you move.

Mine always hits the day after I overdo, and if I haven't overdone it too much, it's generally over just like you by around 8:00 p.m. or so. But if I've pushed myself too hard (which I generally know I've done) it'll last two days. Though a few years ago it would take 2 - 4 days to recover until I discovered BCAAs which cut my recovery time in half, and they still do.

Do you keep track of your activity levels, how much you can safely do without triggering PEM? Mine is pretty much like clockwork - I can generally do 3-1/2 to 4 hours of light activity day (with rest breaks) without triggering PEM. But it doesn't take much going over my limits to land me in bed the next day.

That is a great thread @Wayne linked above --

 

[Therunningman]

Hey thanks for the reply

The hard thing is I am only getting into my parents car, spending 8 hrs on the couch at there place. with short walks to the bathroom. Then back in the car. Into my house and bed. I’m only doing 500-700 steps a day. They are taking care of me. Im reduced to just this since Jan when I was driving my son to school and doing household stuff. It’s been devestating how fast my cf has progressed in 2018.

 

[Therunningman]

What are BCAAs?

 

[Sushi]

What are BCAAs?

Branched chain amino acids.

 

[Therunningman]

Is there a link to BCAAs on Phoenix rising you can point me too with information? Thanks sushi

 

[Runner5]

Have you had your heart fully checked out? I would definitely get heart disease ruled out.

 

[Therunningman]

I have had all the major bloodwork done in the last 2 weeks to detect anything like that.

 

[Wishful]

I agree with Mary that it doesn't sound like the morning activity is triggering immediate PEM; you're just feeling the symptoms once you try moving. My muscle aches, for example, don't show up until I actually start moving. It's too bad that laying in bed all day isn't a realistic option. Being able to sleep until a treatment for ME/CFS arrived would be a good option too.

Wake me when the treatment arrives!

 

[Mary]

Is there a link to BCAAs on Phoenix rising you can point me too with information? Thanks sushi

Look at the thread which Wayne linked above (first post after your initial one) - it talks about BCAAs as well as several other supplements which have helped members here with PEM, both preventing it and recovering from it.

 

[Mary]

@Therunningman - here's a tip - if you're replying to someone, it's a good idea to type their user name with the "@" sign in front as I did with your name, or here's mine: @Mary. That way the person you are responding to will get an alert that you have responded to them.

 

[Therunningman]

@Mary thanks so much Mary

 

[junkcrap50]

Almost sounds like your having a bad vagal response. Do you have a bowel movement in the morning when you wake up? That's the only thing I can think of that might be causing a vagal response in the morning. (EDIT: apparently urination can also cause it.) But I'm sure someone else who has autonomic dysfunction can impart some expertise.

EDIT: Apparently urination can also cause a vagal response. https://en.wikipedia.org/wiki/Reflex_syncope

Also from here (https://en.wikipedia.org/wiki/Reflex_syncope):

The individual frequently experiences early signs or symptoms such as lightheadedness, nausea, the feeling of being extremely hot or cold (accompanied by sweating), ringing in the ears, an uncomfortable feeling in the heart, fuzzy thoughts, confusion, a slight inability to speak or form words (sometimes combined with mild stuttering), weakness and visual disturbances such as lights seeming too bright, fuzzy or tunnel vision, black cloud-like spots in vision, and a feeling of nervousness can occur as well.

The person may be nauseated, pale, and sweaty for several minutes or hours

 

[jeff_w]

hey guys just wondering how many of us get a pem first thing in the morning. For me I wake at 6 am and go to the bathroom. When I get back in bed, the energy I just used quickly drops and my arms get weak, nausea, sweats, hot and cold, fatigue. PEM. I will be like this until 6-8pm before energy returns. The next day I wake up fine with energy.

I used to experience that, back when I had PEM. I was mostly bedridden for 4 years. In my case, the problem was neurological and fixable. Have you ruled out neurological problems like craniocervical instability or Chiari?

Here's the thread.

I am mostly bed-bound.

Same here for 4 years, until I got it fixed.