Talking wipes me out.

[minkeygirl]

@alice111 i still don't know. Even now from saying hello to my mail person yesterday it feels like someone sucked air out.

I have always felt for me I had some Infection. I recently tested stupid high for MPN so I'll talk to my NP in December. I've been on roxithromycin for a year but I'm not noticing anything. I just stopped to test and see how I feel.

I also have an appointment with dr Vincent in April so I'll bring it up with him.

When it first started a few years I got relief from acyclovir so I think I'm on to something with virus or infection.

 

[minkeygirl]

@OhShoot at what point do you say maybe I should stop? Because since mine started Ive had to stop driving and I am now housebound.

It's one thing to talk to someone when you have to. To chat to yourself when it clearly causes problems, like my head feels funny and I'm exhausted is not essential. Stubborn is not the word I would use.

 

[minkeygirl]

Then don't do it.

 

[OhShoot]

@minkeygirl I know it's not good, and I really am serious about stopping. My stubbornness (the 'I don't care, I'll do what I want' kind) isn't always good; it just grabs the bit and bolts sometimes.

I've only known about my ME for a few months, so parts of me still can't believe that doing X thing will REALLY cause a crash--it's all so bizarre!

But it's become an ingrained habit now to blurt out whatever, so even just this morning I've maybe caught myself five times and not caught myself five times.

I've only seriously started getting onto myself about it in the last few days, so it'll be a little while before I can fully break the habit! But I am definitely working on it.

 

[minkeygirl]

For some reason i thought you had been sick for much longer, where did I read 6 years?

All I can tell you is the one thing everyone says here, the one huge thing that will make a difference is rest. Do 50 % of what you think you can do. And rest. Rest after doing something for 5 minutes. Rest and rest more. And then rest.

I'm always scared. Whats the one thing I'm going to do that will do me in? And yes it can really cause a crash. The smallest thing can cause a crash. read around here and you'll see.

Also, can you please put in more paragraphs? Many of us, me included can't read huge chunks of text. It doesn't have to make sense. Just need the white.

Good luck

 

[OhShoot]

@minkeygirl You did read it in my post, I've been ill for 6 years but started off mildly, and then didn't read about CFS much less ME until a few months ago.

Oops, yeah I have the same problem, I just forget when I'm the one writing! I'll add some.

 

[moki]

I don't know why this happens, but it happens to me, too.

There really aren't that many people in my life that I have extra energy to talk to. My kids are the main people that are energizing for me (they are adults). I guess I'd say the people that really, really know me and understand what I'm going through and accept me completely are welcome conversations for me. Anyone else, no matter how nice they are, well-meaning, etc...conversations just don't last as long. Email and sometimes texting is better for those people.

The sheer volume of emotional drag that we experience with this condition is huge. I suppose this depends on many factors and each individuals symptoms. I am fortunate enough that I do not need to work and I also live alone (this is a fortunate thing to me!) I spend most of my energy taking care of myself throughout the day. This used to be a burden, but now that I've done it for awhile, its allowed me enough time to really explore my own likes and dislikes, pursue things I can do that "feel" exciting to me (sometimes that is just learning about something interesting online or in books.). I can also move throughout the day at my own pace. Turtle-y.

Back to the talking thing...I had a rare visit from an old friend and we talked for 2 hours. This was like a marathon and although I loved catching up with her (and I was mostly listening) I was exhausted afterwards, started experiencing muscle pain and fatigue and was useless the next day. I am currently in a period of no symptoms, but live a life of extreme slowness. Having some of these PEM pains was a bummer because they had been gone for several months. This showed me how draining listening is when you are invested in the conversation.

There is probably a scientific explanation there somewhere, but I am not the one to analyze that kind of thing. It just wears me out!

I don't have any advice but please don't beat yourself up about it.

 

[Marco]

Yep - same here. There's a certain physical exertion in talking especially when you're not out much and socialising much but having a conversation is also an intense cognitive workout. A 20 min conversation with my sister can leave me wiped put and in bed (and it's not her fault ).

Very frustrating.

 

[moki]

It's so weird, huh.

I really do feel like I physcially exercised and my whole body feels more tired than usual.

 

[rdf]

@OhShoot When I talk it feels like someone sucked the air out of my lungs and they ache. I never talk unless I have to.

I text, use chat or email. I use IP relay to call places so I don't have to talk.

I don't know how long you've been sick but after 20 years I've earned fast. Don't do what causes problems. You know talking is bad and yet you talk to yourself? I don't know if stubborn is the word I'd use. I'm just saying.

First time posting, but I have the exact same thing.
I don't talk either, as a result of the after effects. I text or e-mail.

I describe the feeling the same way: talking rapidly drains me of breath and leaves my chest sore (among many other symptoms).

On top of that, I believe I have discomfort while talking due to my vocal cords vibrating my ribs. So I naturally put a hand on my ribs/chest to muffle them.

Does anyone do that too?

 

[Effi]

hey @rdf first of all: welcome to PR!

I don't really notice the vibrations of the vocal chords myself, but I can imagine how that would be exhausting.

 

[Hell...Hath...No...Fury..]

@minkeygirl i totally get everything you're saying and also the air being sucked out. Had it for 18 years.

I've met up with ME people in the past who can talk non stop for hours. I've never been able to comprehend it. Even if fuelled by adrenaline they still drained the life out of me.

Sometimes every word uses up the air that i need to breathe. Its almost like i have to sacrifice a breath in order to say a word instead.

I emailed a company to remove some junk the other day. They wouldn't give me a quote via email even though i explained exactly the pieces to be taken away. They just kept telling me to call them even though i explained i couldn't. I told them i'll have to find someone else if they are going to force me to make a call when i'm too ill to talk and they said 'yeah thats fine.' And that was the end of that and i'm still stuck with junk to get rid of

The very occassional times when i was able to go out to a pub with my partner in the past, i could handle it for a couple of hours max, and i could almost pass as okay as long as someone didn't sit next to us and start talking to us and i could enjoy myself.

If someone did latch on, it was my night out over instantly. I could do a few sentences or more with whoever decided to latch onto us while having to speak over music, and then i'd go into a kamikazi nosedive while feeling really annoyed that my rare night out has been cut even shorter by some drunk who decides to chat because they're on their own.

My partner would know when i started nose diving as he could see me crumpling but he never wanted to be rude to the person talking to us and so it would continue and continue, until i'd be reaching a point where i might not even be able to get back home at all.

I did try just sitting there once and disconnected from the conversation but the longer i sat there, i'd go in a trance and my brain would start to wind down from the break and i'd not be able to go back to interacting again when it was required of me. So that was stressful too.

It took a massive massive effort to get out and i'm in effect being sent back home to my prison because i'm expected to entertain a complete stranger.

I'd be then seriously ill and my partner would be in a bad mood too. So we stopped going out at night because he couldn't enjoy himself and i didnt feel safe going out with him and having to deal with it all on my own. It was too much.

The talking problem is definitely one of the most irritating and debilitating and literally permeates every aspect of life.

Its often made me feel more disabled and inadequate than when i'm paralysed or crawling along the floor. Maybe because the last two things can be done in private.

I live in solitary confinement most of the time so i get to forget about it most of the time, yet its still one of the first things i'd like fixed if i had a choice because its needed for so many things. Its something that people are completely unable to understand or have very little tolerance for

 

[Cindi]

Listening is worse than talking for me.

 

[Kati]

Listening is worse than talking for me.

That's interesting, Cindi, when you say listening, are there instance that are worse, like listening to music, or unwanted noise (traffic, someone else's music) or concentrating to what a person is saying?

 

[OkRadLakPok]

This is a very interesting post! If I am alone, all by myself for a long time I get terribly exhausted and depressed. So I venture out just to be around people, but I always have earplugs in when I go anywhere. That dulls the noise but I can still hear and can still hear people talking, too.

I don't find that anyone wants to talk much as texting has taken over. Most of the time I never get into conversations that last more than 5 minutes unless it is with my therapist or family.

I do feel exhausted after therapy, but that is the only case where I consistently get a chance (or have to ) talk.
So I can't tell if it is widespread.

I can say that if I am at a lecture or something it can be PURE TORTURE even if I like the topic. It hurts to sit long and I can't take it. Even going to religious services for a long time can be hard, and that's difficult. I have had to leave early many times.

 

[Cog71]

@OkRadLakPok I can relate to this too. In fact even before I got ill I had trouble in lectures or at the theater or at wedding services. I would either feel incredibly tired and need to lie down, or like I had no air in my lungs and desperately need to sneak out and go and sit on my own somewhere. In fact I have done this on several occasions - sometimes locking myself into a bathroom and sitting on the toilet seat for ten minutes just to get away.

The other thing I've noticed is that when I'm talking to somebody I find interesting I don't notice the fatigue so much. I can talk for an hour or two to a really good friend or somebody who gives and takes in a conversation. When it's somebody who just talks about themselves and there's no back and forth I'm literally gasping for air after 5 minutes.

This makes me feel very guilty and like it's my own fault. But it's a genuine reaction. And it only started when I got ill. Nobody enjoys boring conversations but before FMS I could quite easily just nod and smile and let the person talk. Now it's impossible. What gives?

 

[Hell...Hath...No...Fury..]

@Cog71 wow i feel like you've just described myself there

 

[Wishful]

It's helpful to know that other people have this problem. I don't have it quite as severe or sudden as some people described, but my energy does seem to fade during socializing, and my overall symptoms are worse the next day. I wonder whether socializing consumes large amounts of a neurochemical (that we are unable to replace quickly) or creates large amounts of toxic waste chemicals (that we aren't removing quickly enough).

 

[Tella]

perhaps your rushing to get everything you want to say out before your word finding ability does a bunk. so if you slow down and actually inhale at the end of each sentence. you may not end up with that shortness of breath . by the way we have to exhale in order to make sounds. so screaming at me for stating the obvious will leave you short of breath.best wishes

Why the rude and ignorant comment? insensitive too. Who said they were screaming? Ugh. Trolls

 

[Tella]

I asked about this a year ago but I thought I'd revisit it since it's still an issue.

Talking wipes me. Even a short conversation.

After I talk it feels like someone stuck a vacuum down my throat and sucked all the air out. My chest aches. This is maybe more exhausting than doing something physical. Sometimes my throat hurts but not all the time.

I know its not a pulmonary issue. My O2 is fine after this. My lungs are fine. It's a crazy ME thing.

i know others have this problem. Has anyone figured anything out? It's one thing to not be able to go out but when talking does you in, how do you function? Email and Chat only go so far.

Please tag me. Thanks

Hey how r u now