The Difficulty of Speech

[Cort]

Laurel has a difficult time speaking. Patient X could hardly speak (or do anything at all at one point. Indeed he could hardly stand any stimuli). I can speak but I've found speaking at some times to be quite discomforting. For me its as if loud speech reverberates in a painful way throughout my body. Calling for the dog, for instance, hurts! What a strange, strange thing.

I asked Patient X about this since he experienced it so severely. He said the nervous system damage get so great that the stimulation from speech is just too great. Given my experience I wonder if its simply the vibrations from the one vocal cords echoing up and down the body that is too much - talk about being hypersensitive!

I wonder how prevalent this is - I'll bet it's really prevalent.

 

[Jody]

Cort,

You mean that physically speaking is difficult and painful?

At different times, I had trouble speaking, but it was not painful so much as ... hard to co-ordinate.

I had times when I felt like I thought a recovering stroke victim might feel, or someone with brain damage.

Sometimes it was hard to comprehend what other people were saying.

Sometimes it was hard to formulate in my mind, what I wanted to say. And sometimes the act of speaking felt slow and complicated.

My words would come out slowly and mushy -- it took a lot of effort to articulate the words clearly and sometimes the words would come out ... wrong.

 

[Cort]

At times yes - pain and uncomfortable but also difficult. It seems to take so much more energy to do at times. I felt I was hit pretty hard cognitively in many areas but talking and listening to talk - there I think I was hit the hardest. Reading and writing not as much; I think it takes more to generate speech.

 

[Jody]

I felt I was hit pretty hard cognitively in many areas but talking and listening to talk - there I think I was hit the hardest. Reading and writing not as much; I think it takes more to generate speech.

Cort,

This must make these conferences and interviews you are involved in very difficult sometimes, huh?

Sometimes speech has been more difficult for me. Other times ... well for ... about, let's see ... maybe 5 years? I didn't write anything beyond grocery lists. And before CFS I was writing all the time, a couple articles a day for different things, dozens of emails to people, and my own journal, every day.

In I think 2001 that slowed to a crawl and in 2003 it came to a complete and abrupt halt. Didn't start writing anything till I started emailing my naturopath as part of my "therapy". And it has been a very slow process to get to the point I'm at now.

Yet during the times that comprehending and speaking was malfunctioning, the loss was enormous at times, and (believe it or not, as you've seen I can use a lot of words ) there were times when I was completely unable to use words. At all.

 

[LaurelB]

Speaking

Cort -- thank you so much for bringing up this topic. It is something that is rarely discussed or mentioned in the usual list of ME/CFS symptoms, but I think it is much more common than people realize. Whenever I mention it to a fellow PWC (or is it PWM/C now?), it seems almost everyone can relate at least on some level. I know my fiance also has difficulty speaking, and can rarely talk on the phone, etc. It's extremely draining for him.

As for the reasons why -- it's funny, but it's difficult to put into words. I can relate to what both you and Jody mention. It seems to be a combination of things.

After the crash that left me homebound, there was a time where I could still speak, but with significant difficulty. I remember the vibrations my voice made when I spoke always left me feeling dreadfully dizzy, and seemed far too loud in my head. It was also somewhat painful and very draining in ways I couldn't understand. It's amazing the things you never realized (when healthy) require energy.

I also find that when I try to speak, I have quite a bit of difficulty breathing. It's weird, but... talking requires some coordination with your breath, and I struggle with this now. Even when I whisper, I often have to get everything out in one out-breath. I can't seem to manage breathing in and out and talking at the same time -- at least, not very easily.

And then there's the problem of sensory overload. It's like my brain can't handle the task of speaking, listening to what the other person says back, thinking of a response, and getting all the words out in reply. I have to think of exactly what I want to say before I speak (or whisper). It all feels very slow and complicated, as Jody said.

I have trouble with even just listening to someone talk, too... I often have to close my eyes. I'm not sure why, as I can listen to audio books and such w/o much problem. It seems watching someone talk and knowing I need to respond in some way (even if just in nonverbal cues) is just too much info for my brain to process.

It all sounds so crazy, but it's such a struggle for me. The sensory overload carries over to a lot of other things as well. While not as bad as Patient X (I can usually listen to music, audio books, etc) -- I can't watch TV. The images change much too fast for me. My brain seems locked on the first image, and before I know it -- 20 different images/camera angles have flashed in front of me and my brain just shuts down. Trying to also listen to what's being said as the images flash by, and then make sense of it all, is just impossible for me. It causes an instant crash. So I haven't been able to watch TV in 9 years either. Not sure if that's a good or bad thing. I can listen to it, though -- I have a tapestry over the TV so I can't see it, but can still listen and keep up with the news, etc.

I have trouble reading as well... I have a speaker program on my computer that reads everything for me with a click or 2, or I wouldn't be able to be on these boards, write a blog or even email my friends, family or fiance. So that has been a godsend.

It's funny because before I became homebound, I didn't even really have any cognitive symptoms at all. But it became a major problem for me seemingly over night.

Okay, I went way off topic here. I have a habit of rambling sometimes... I think because I can't talk, that when I write.. I tend to carry on. And on.

Anyway, my point was that the difficulty speaking seems to have many layers to it.

Thanks again for bringing this up!

Laurel

(sorry for all the edits)

 

[Cort]

Writing is still very good Laurel!

Yes at times, even for me, who is so much better, it is so difficult to take in speech. I think it's true that ME/CFS is a disease in which you can only take in so much. I remember when I was having such terrible MCS problems and I'd be in a crash and just trying to take in something as large as the landscape or a small vista would make me nauseous - basically send me deeper into the crash - it was just too much stimuli to take in at one time.

I have that visual/video sometimes in movie theatres altho not lately. The film starts and I can't catch up for a good ten minutes - its like I'm a good half second behind and but eventually I just slide into the movie; it's bizarre and I'm sorry you have it to such a degree.

I wish someone could just dig into your brain (not literally!) and find out what's going in there. Think what they would find if they looked (and probably had the right tools)! That would be an eye-opener.

I'm waiting for the day when someone figures out a test that just blows everyone's mind. I really don't buy this "its a little bit of this and a little bit of that". I think there's a big injury in the brain somewhere - they just haven't found it yet.

 

[Michael Dessin]

Speaking

YES!! Everything that has been mentioned on this thread, I've experienced myself. Plus the fact that the vibration from my voice box would stimulate my spinal cord/nervous system so much, I would need to whisper.

I even got to the point a simple thought would stimulate my nervous system too much. JUST A THOUGHT!

The stimulus was one thing that prevented me from talking but the mitos not creating enough energy for us to talk as well.

Not being able to comprehend someone when they talk to us is crazy too. Its like you see their mouth moving but cant understand a word.

Nothing was worse than watching TV though, its like my brain literally would get all jumbled/mixed up.

Once the nervous system started healing all of these issues went away.

 

[Cort]

That is exactly my experience with thoughts - but to a much lesser degree of course. I've finally (at times) slowed down enough to be able to watch thoughts appear - and see they often just jolt my body. Usually my body is in a state of overexcitation anyway and I didn't really notice it - I just felt like crap. But when I'm able slow down and reach a place of relative peace I can see those thoughts just send my body banana's.

In general my body does what Ashok Gupta predicts; I stop breathing, muscles tighten up, heart beat speeds up, I often get weird sensations in my head, I feel disorientated, body feels heavy and uncoordinated, sometimes I have vertigo like feelings - it just feels like the system is overwhelmed - like its on a trigger point that gets tripped all too often.

 

[Angel]

troubles with talking, and listening are two of the ways I monitor my daily health with ME/CFS. When I have a hard time finding and saying the words, I know it's time to retreat into the cave and rest.
Recently it was pointed out to me that often I don't respond to things that others say. I absorb it, but I don't comment. I guess it's just too much effort to respond. I don't mean to be rude. It's just that I have so many words per day, and if they are slowing down, I don't want to waste them on meaningless chatter.
I am very aware of the energy of a conversation such as you have mentioned. I think that with healing comes the ability to converse more without the weight of using up energy.

 

[Kati]

Talking too much will give me a headache- so I avoid it- fairly easy since I live by myself- but I know I avoid talking on the phone because of that. I also found on a couple occasions that if I over do it, my speech will become slurred- that's a really scary feeling! I hope it doesn't happen again...

 

[sleepwalking]

Speech

My speech seems to completely fall apart after 5 pm or early evening. It becomes slurred, I can't seem to string a sentence together. I can't remember words. It is both frustrating and embarrassing.

I also have difficulty listening to others talk. I have to turn the TV to mute and I can't talk on the phone.

Writing also seems very hard these days. I used to write press releases on a moments notice. Now I just try to write a post on a forum and I look back at it and see that I've inserted an inappropriate word, or it appears that I don't know proper grammar.

When my SIL started correcting my grammar in emails I just quit communicating with her. No big loss.

I tried to explain this to my doctor but couldn't find the words to explain what I was talking about. LOL

 

[markmc20001]

Yes speaking is difficult for me too. Or talking on the phone, or maintaining eye contact and talking. I thought I read recently somewhere that speaking is one of the most complicated functions in the brain. It requires a lot of brain power.

I have diffculty speaking, reading, writing, remembering, paying bills.

Kind of weird, becuase I hear peopl in hear talk about how difficult it is for them to lift their hands. Well I went on a 5 mile hike the other day. About halfway through I could barely talk, but made it. I am now crashed and burned for two days, but can still move. However, just mentally out of it where cleaning the kitchen and doing laudry is beyond my mental capacity at the moment..

 

[bluebird]

uh-huh, lol

that is all I have in me right now...and I once read for a living, wrote for a living, was considered more than halfway bright once...then this happened

nothing is sacred

 

[Marylib]

Talking

Speech was once my chief recreation and also key to my profession, like many of us. Now I can only take it in small doses. Thankfully, I do not get pain from the vibrations of speech in my head. I do get hoarse and croaky when in a "bad patch."

I avoid the phone. Certainly cannot think and talk at the same time without stumbling, fumbling, hesitating.

Writing is much easier now. But I only write in small bits. Staccatto. Just remembered how in school, my teachers used to ask me to write in a more concise style. I always preferred long sentences with several antecedents to each verb. Sure don't have that problem any more.

All in all, I am lucky though. I can watch dvd's on the computer if the sound is not too loud. I am lucky compared to many whose lives have grown so much smaller than my own.

Laurel, I admire you. And the rest of you guys too!

 

[Tammie]

tlaking

I have a lot of the same problems that have been mentioned with speech, esp related to the cognitive processing issues and also sometimes getting out of breath speaking....or just being way too tired to try to talk

Another thing that I have noticed is that I often realize hrs after a conversation that I didn't actually say a lot of what I meant to - a lot of what I thought at the time that I had verbalized apparently never actually left my brain!

 

[blackbird]

Having stayed in the house a lot over recent months, I haven't really done much talking, so hadn't noticed, but this is a real problem for me too.

A couple of months ago I had a really bad throat, and was told that it was an infection, and to take ibuprofen and paracetamol until it went away. Which it did after a few days.

The day before it started I'd sung along to a few songs for the first time in ages, and felt that it could have been the trigger. Going to the clinic and being told it was an infection, I figured it must have been a coincidence.

Since then though, I find that the right side of my throat starts to hurt if I talk too much.
If I sing at all, or even hum along to the radio, I can feel the beginnings of the same throat problem.

It starts in the right side of my neck, level with my Adam's apple, and spreads from there. At it worse when it was supposedly an infection, it felt like my neck was on fire, I had massive toothache in my lower right jaw, and my right ear was on fire.

I'd been taking it easy at the time trying to get to grips with ME anyway, so was worried this could be a permanent thing, but it went away.
Now it feels like it is a permanent thing, just not the pain itself, but a restriction on talking or singing, otherwise the pain will be back.

I'll be gutted if I can't sing anymore.
Yet another loss.

 

[gracenote]

I want blackbird to sing!

Since then though, I find that the right side of my throat starts to hurt if I talk too much.
If I sing at all, or even hum along to the radio, I can feel the beginnings of the same throat problem.

It starts in the right side of my neck, level with my Adam's apple, and spreads from there. At it worse when it was supposedly an infection, it felt like my neck was on fire, I had massive toothache in my lower right jaw, and my right ear was on fire.

I'd been taking it easy at the time trying to get to grips with ME anyway, so was worried this could be a permanent thing, but it went away.
Now it feels like it is a permanent thing, just not the pain itself, but a restriction on talking or singing, otherwise the pain will be back.

I'll be gutted if I can't sing anymore.
Yet another loss.

I have two thoughts I don't know if either will help or not. Your symptoms are very different from mine. I'll throw this in and you can throw it out.

ICAT: Tuesday I'm going in for an ICAT. I continue to have head and jaw pressure, sinus congestion, and a staff infection in my nose that has not resolved after several rounds of very targeted antibiotics. We've been working on this for years. The ICAT is used primarily for bone structure and orthodontic type work as far as I know, but can also show infection that would not show up on a normal X-ray. I know someone who had infection show where she was having no pain, but with treating has improved somewhat overall.

The i-CATs Extended Field of View dramatically reduces treatment planning time by creating anatomically accurate and detailed 3-D images of the skullfrom the neck to above the bridge of the nose, or nasionin just 40 seconds.

TRIGGER POINTS: I don't know what your general symptoms are but am wondering if you have ever had any work done with trigger points? I can't speak knowledgeably about them, but if you have them, they refer pain to other places and can cause a confusing pain picture. Trigger points can cause the kind of pain I think you're referring to.

Wiki: Referred pain from trigger points mimics the symptoms of a very long list of common maladies, but physicians, in weighing all the possible causes for a given condition, rarely consider a myofascial source. The study of trigger points has not historically been part of medical education. Travell and Simons hold that most of the common everyday pain is caused by myofascial trigger points and that ignorance of that basic concept could inevitably lead to false diagnoses and the ultimate failure to deal effectively with pain.[6]

http://en.wikipedia.org/wiki/Trigger_point

Probably the best resource for trigger points is this:

http://www.triggerpointbook.com/

I want you to be able to sing, blackbird!

 

[ramakentesh]

For me it is often like a pre-migraine aura - but that goes on and on - like im hyper sensitive to sound, noise and any stimuli prettymuch. I used to get this before a migraibe but then the migraines stopped and the POTS, etc symptoms began.

 

[Dr. Yes]

Does anyone get face ache? I mean intense aching in the jaw muscles each side of the face? It's as if I've been chewing leather for about 3 days! When my face hurts like this I don't bother speaking as it hurts too much and I have to skip meals as well.

Athene -

This sounds like a more severe version of something I used to get... It also sounds like something a lot of fibromyalgia (/CFS) patients complain of. Is it anything like TMJ disorder? Or myofascial pain syndrome? That's what many of them are diagnosed with.

 

[duendeni]

My speech seems to completely fall apart after 5 pm or early evening. It becomes slurred, I can't seem to string a sentence together. I can't remember words. It is both frustrating and embarrassing.

I also have difficulty listening to others talk. I have to turn the TV to mute and I can't talk on the phone.

Writing also seems very hard these days. I used to write press releases on a moments notice. Now I just try to write a post on a forum and I look back at it and see that I've inserted an inappropriate word, or it appears that I don't know proper grammar.

When my SIL started correcting my grammar in emails I just quit communicating with her. No big loss.

I tried to explain this to my doctor but couldn't find the words to explain what I was talking about. LOL

Yes! I have slurred speech after a long day. I kind of feel like thoughts get 'stuck' or frozen in my head, there is no fluidity or clarity - thinking is like wading through quicksand, a laborious up-hill struggle. Either several words try to come out of my mouth at the same time and amalgamate into one i.e. I trip over them and say "pass the salplease" or I feel speaking is like trying re-cordinate my brain and mouth. Its not really severe (like a stroke victim or anything) but it makes thinking and speaking difficult. My mind surges when I attempt to from coherent sentences in this state or just cramps up - actually it seems to simulatenously cramp up and surge. The brain feels like a dead batterry that is being bombared with electricity, to put it metaphorically.