Unable to speak: Hi everyone, I hope... - Fibromyalgia Acti...

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Unable to speak

grayson1918 profile image
8 Replies

Hi everyone, I hope everyone is as well as can be, and I'm hoping that someone can put my mind at rest. When I'm having a flare up or if I'm tired and having fibro fog I find it difficult to speak. It's like a stutter but my jaw also goes into spasm, and I just can't get the words out. I've also noticed it happens if I'm talking on the phone, or if I'm in a crowded place so I have to raise my voice. I've spoken to my GP and he just told me that it's yet another sympton of the fibro! It's getting to the point where I'm reluctant to go out, and not answering the phone. It's a horrible sensation when it happens and I get embarrassed by it. Strangely though, if sing what I want to say it doesn't happen, but there's situations where singing isn't appropriate! Thank you in advance for reading this, and any advice anyone can give me. Love to you all ❤️

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grayson1918
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8 Replies

Hello, I have never heard of this being a part of fibro. I mean alot of us with fibro have jaw issues like TMD/TMJ along side fibro but it's not part of it. Alsp TMD/TMJ in my experience doesn't affect being able to speak. Can you see a different gp for a second opinion?

Cotswolds25121 profile image
Cotswolds25121

hi, I agree with Bertie, I too have not heard of this being linked to fm but then again I am no expert so I would definitely see another dr. I’m not suggesting that I am right but hopefully it isn’t a case of the gp dismissing it as this because they don’t understand about fm. Maybe others will have a different perspective. I do feel for you though and hope you can get some answers. 🤗x

Ani7 profile image
Ani7

Hi, sorry to hear that, however you are not the only one who is unable to speak, I have same problem, when ever is began to flares up then I am unable to speak, most of the times new carers are unable to understand however the regular carer are fully aware of it. New carer takes some time to understand what is going on. I know it is difficult to explain anyone that where to apply creams and what I want for food. Just listen to your prayers or listen to calm music to meditate you.

Yassytina profile image
YassytinaFMA UK Volunteer

It may well be related too fibro but if you feel your GP is not taking your symptoms on board I agree differently get a 2nd opinion for a piece of mind. In the meantime take care , I hope you get some answers very soon xx

Patdoyle profile image
Patdoyle

I get the can’t get my words out and sometimes can’t think straight so I mutter a load of rubbish. Usually comes when I am tired and have brain fog

KimiJay profile image
KimiJay

Hi grayson. One question and two suggestions.

Question is, if you read out loud to yourself or others, do the words come fluently from you or does vision get in the way too? Not entirely sure where I am going with this but it may give a clue. - I don't like phoning that much either. Well, I go into near panic sometimes and put off doing it! Helps to write out everything you want to say or ask first if it is something more formal than talking to a friend.

1st suggestion - pretend you have a notepad on your less dominant wrist. If you are trying to think of a word and it won't come, imagine the word you can't think of is written on the pad and read it off. Works for me sometimes. May work for you. It's a little fogdodge!

2nd suggestion. 'If' you have the energy and the mobility maybe join a choir which welcomes all those who just want to sing, or go to a folk singers pub and join in because it sounds as if you are attuned to music anyway and it would be therapeutic for how you feel. Vocal skills need practising or they drop off.

Debsdelight72 profile image
Debsdelight72

Hey there grayson1918, I sort of stop telling my Doc sometimes or I'll say,It must be fibro, But I worry because I ended up in hospital last year on a drip for 8 days,It turned out I had an infection of my gall bladder and plenty of gall stones to boot,

I often stutter when I'm nervous,or say the wrong word (got me in trouble a few times) My Hubby has a phone where everything gets dealt with by him,

I won't speak on a phone at all now as for going out.....I don't.

I say I don't what I mean is I have not been outside apart from the garden and appointments for nearly 5years. I also just live in my bedroom I only go downstairs if I need to empty my bowels.I feel really guilty sometimes because Hubby brings meals upstairs and we all settle in and eat together,😔 Just thinking of going out can end in a panic attack,The crappy part is I don't know why, I'm prescribed with diazapan to get though the door.

I find the more I worry about the issues the more I get worried then just clam up I use my power chair when I'm taken to appointments, The pain of being on my feet or loosing my balance,When I just have a walker I walk like a pony, I have a few cards that say YES NO SORRY THANKYOU and give them a note to say I'm not being rude but heres my way of communicating because I dont know you.

I say you have to do these things to get through,Or if you dont do it when singing SING,I hope you find some strength to get through

Take care

Debs

Polly-S profile image
Polly-S

Hi grayson1918,I have been having speech problems for the past 7-8 months.

Without reason in the middle of conversation, my mouth and tongue got heavy - like after dentist anastasia. The words get slurry, try to repeat them 3-4 times and still can't . It goes way in 30-40 minutes, like never happened until the next time.

I didn't link it to a flare - feeling like always in a flare...

The opposite - usually happens when I am in the leaving room downstairs and for me being there means I feel better.

So always in the middle of long conversations and exited.

Last time happened last week and remember thinking - am I forgetting how to speak?

Didn't not mention it to my GP, because I can't book an appointment and kind of sick of always having to explain myself again and feeling he downgrade the situation.

So, you are not alone.

Take Care

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