Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Talking wipes me out.

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by minkeygirl, Aug 19, 2015.

  1. minkeygirl

    minkeygirl But I Look So Good.

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    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
     
  2. alkt

    alkt Senior Member

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    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
     
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  3. shannah

    shannah Senior Member

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    Sorry I don't have any suggestions for you @minkeygirl . Just wanted to let you know that you are not alone.

    Talking more than a few words at a time hasn't been on my list of doable activities for years. Even listening for any period of time is too much. Communication is via email only other than in an emergency.
     
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  4. lnester7

    lnester7 Seven

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    I sympathize for me NOT talking is the first symptom of mayor crash. So I cannot talk when I am about to crash. I simply don't and everybody knows when I am not talking what it is, I even got a bell for next to my bed so I can let them know I need help. Sorry don't have a good suggestion but would like to know if something helps too.
     
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  5. minkeygirl

    minkeygirl But I Look So Good.

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    @shannah @lnester7 when i have the energy I use an IP relay through sprint.

    I connect to the site, enter the phone and type to a relay operator who talks to the person in the other line.

    It's tiring and requires concentration but it's useful when you have to call someplace that doesn't have email or chat.

    Google sprint relay.

    I'm wiped from a 10 minute call.
     
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  6. alkt

    alkt Senior Member

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    sorry to see that you have crashed that badly.i to have had times where just saying yes or no please or thank you have taken far more effort or energy than most people could possibly think.hope you have some improvement soon.
     
    minkeygirl likes this.
  7. butterfly7

    butterfly7

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    I am buying some nice cards to send to people today by the artist Monet a 30pack anyway to let them know Im too tired to talk <I think its all the emotional stuff or if you are talking about the illness or but also just lack of oxygen....
     
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  8. Kati

    Kati Patient in training

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    Hi @minkeygirl talking is also wiping me out and causes symptoms, most of the time.

    What you are describing sounds to me you are getting autonomic nervous system symptoms. I wonder if you are better talking while you are horizontal? For me, it is the case but in periods of relapses even talking horizontally, or even engaging in online conversations (texting) gives me symptoms.

    I guess it requires too much cerebral work for what I can handle.

    I am lucky that I don't have to talk so much, and sometimes I go out of my way to not talk :cool:. It helps that I live by myself.

    Best wishes
     
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  9. minkeygirl

    minkeygirl But I Look So Good.

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    It's hours later. Still feel it. I have a pulse ox. I have oxygen.

    You need to talk to deal with life,
    Insurance, bills, repairs.

    I'm looking for a magic bullet. I can't figure it out. The why of it neither can my doc.
     
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  10. minkeygirl

    minkeygirl But I Look So Good.

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    @Kati Im always horizontal. Doesn't seem to matter.

    I live alone too. I can't imagine having to talk everyday.

    I've had plumbing issues. Have to talk. I had to schedule a ride. Had to talk.

    Sometimes if I suck on w throat lozenge before I start it helps but not always.

    Sux

    Now that I think about it. Talking Horizonte might be harder. It seems to close up my trachea.
     
  11. alkt

    alkt Senior Member

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    looking for magic bullets. much better
    than the other sort hope you can find some thing that helps you soon.
     
  12. Kati

    Kati Patient in training

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    Sorry @minkeygirl it sounds like our issues are different. I did not take you quite so litterally when you said it was like a vacuum sucking the air out. But I definitely understood when you said it wipes you out.

    If it is more of a mechanical issue, perhaps a speech pathologist or an ear throat and nose person can help you out.

    Laurel Bertrand is a patient who canno speak above a whisper. She has a blog called Dreams at stake. Best wishes
     
    Last edited: Aug 19, 2015
  13. minkeygirl

    minkeygirl But I Look So Good.

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    Thanks Kati. No energy for that. Or $$

    I'll check out the blog. Thanks.
     
  14. maryb

    maryb iherb code TAK122

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    @minkeygirl

    I wish you could find a reason for this. It much harder for you having no-one else to help sort out any day to day problems for you so I know its ongoing, I can't even imagine how hard that is. I get stressed at just the thought of having a conversation which involves complex issues, I can feel quite ill within secondsI've been told by an ME doc we don't realise how much energy is used in verbal communication. Wish you could find a solution xx
     
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  15. Effi

    Effi Senior Member

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    @minkeygirl Funny you just brought this up, I'm in a minor crash from talking too long. I'm not 100% sure but it's the only thing I can think of. I have no idea why. It was a friendly conversation with a friend, longer than usual (on the phone, maybe that's more tiring?).

    That feeling of all the air being sucked out of your lungs is sth I recognize. Sometimes it feels like every single word I say is spoken on my very last breath, although I just inhaled air. It's weird. The only reason I can think of is that we take talking for granted, but that it requires more energy than we realize.

    I had this really bad doctor once who sent me to a speech therapist (that was gonna cure me obvi). She did have this theory around speech and how to use your voice. It was something along the lines of: when you're tired you're gonna use your voice the wrong way (I guess putting pressure on your throat instead of your abdomen), which is going to exhaust you even more. Speech therapy was the way out. Tried it, only wiped me out more. (Btw, I didn't use my voice wrong to begin with, but she didn't want to see that as it didn't fit into her pet theory.)
     
  16. Asa

    Asa Senior Member

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    Talking wipes me out, as well. It makes me greatly fatigued and my sensitivity to sound/light/movement/etc. increases, causing headpain/ache, which worsens if I don't lay down and go into sensory deprivation (stillness, no light, no sound). This phenomena, as I experience it, seems best described as those same symptoms/sensory problems of *acquired brain injury* (and perhaps autism/asbergers, too. It's been a while since I looked at these).

    I've never had muscle pain and lymph node problems. The only breathing problems I ever experienced seemed to occur when I also had gastro problems. When gastro is managed, I don't have breathing problems. There's no problem with my lungs when I speak.

    (And my gastro issues are not "worsened by stress," as is so often theorized. A specific diet and regular mild/short bouts of exercise (like walking) positively affect/manage my gastro issues. It makes me angry that doctors deny patients a nutritionist referral and instead blame the patient's alleged problem thought patterns! It took me a long time on my own to learn to manage these gastro symptoms, where a good nutritionist could have advised relief measures near instantaneously. Nutritionists, IMO, don't get the credit they so rightfully deserve! :))

    Despite these differences among us (patients), I still meet (various) ME/CFS criteria, with immune, neuro, and endocrine dysfunction. It's frustrating that people with such varying symptoms are lumped together... Minkeygirl and I (and others, all) could need totally different treatments... I feel more like a hit-and-run case where I do wonder if others have an ongoing infection...
     
    Last edited: Aug 20, 2015
  17. minkeygirl

    minkeygirl But I Look So Good.

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    @Effi So glad I'm not alone. Someone here, I think @Kati mentioned a blog where someone whispered. I have done that but it still is a problem, not as great. I do think sucking on a lozenge while I talk helps.

    Last night I had to make 2 phone calls. I know it is much easier for me to talk at night. This morning, I feel better than I have in a few days, although I do feel some tightness in my chest.

    For me it makes zero difference who I talk to or why, although when I'm dealing with an idiot, I do use more energy. I have no friends so that's not an issue. How I feel when I start talking has an impact.

    I don't think it has anything to do with talking wrong. It's something crazy we haven't figured out yet.

    @maryb I rely on sites that have chat functions. If I could do business at night that would help me immensely. The world still lives around the almighty phone.
     
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  18. Effi

    Effi Senior Member

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    Whispering feels just as exhausting to me, but I guess we're all different. I always lay down when I'm on the phone and have a glass of water close in case I need it. But I try to avoid phonecalls alltogether - I prefer e-mail. I guess it's one of those inexplicable things...
    what about us here on PR @minkeygirl ? :)
     
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  19. minkeygirl

    minkeygirl But I Look So Good.

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    Yes, it's something about my lungs and trachea but not pulmonary.

    I will clarify, i meant friends at home that I talk to on the phone. I'd be sunk without email, text chat or IP relay. And when I worked I was a customer service rep and was on the phone all day long.
     
    alkt likes this.
  20. Effi

    Effi Senior Member

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    @minkeygirl and others
    I was thinking: could this be connected to the anaerobic threshold? PWME have a low to very low anaerobic threshold (a reminder here). When you look at general fitness/running websites, they talk about the 'talk test' as a sign when you've approached your anaerobic threshold. They say when you go for a run with a friend, it's a good idea to talk all the time. When you start feeling like it's too hard to talk while running, it means you have reached your anaerobic threshold aka you're pushing too hard.
    Seeing that we are probably always at or even over our threshold to begin with, talking as a rule is difficult and exhausting and results in lactate buildup (aka crash).

    Or is this reverse logic?
     

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