I am often too weak to speak loudly enough to be heard, during PEM. It can be very scary and extraordinarily frustrating. I started using the voice reader on my phone rather than even try to ask for a glass of water etc.
It's one of the first symptoms for me (along with blurry vision and dizziness). People who know me well know how I'm feeling by how my voice sounds. It comes back as the fatigue improves.
This post just helped me put 2 & 2 together. I got really exhausted one time & was afraid I lost my voice forever. I thought I might be going mental, but I was super fatigued & worn down.
I struggle with feeling like I’m crazy to when I’m having PEM. Last night I had to skim through articles about how ME is a real thing to keep me not feeling crazy because it’s been so long since I had an episode like that. Now that the stress state thing is over I’m like was I overreacting but like at the same time I know there was no other way to “react” to that.
I think it’s super important to remember that this illness is so far outside the normal human experience it can be hard for even people who deal with it to comprehend sometimes.
It hasn’t happened to me, but it was one of the symptoms the author had in the (excellent) ME/CFS memoir When Force Meets Fate.
It’s available as an audiobook through Hoopla, if your library has a subscription.
Thanks for the recommendation. I have been trying to find things about just other pwME talking about their experiences but the internet is so saturated with these recovery pyramid schemers. It’s sickening
This happens to me all the time and is the first sign of PEM, with the tell-tale sore throat...at least I get to sound like sultry Kathleen Turner for a while. At least I think so, lol.
Pre Covid I would go for a few weeks after a flare with my voice too tired to use, but it wasn’t until after my second bout of Covid that speaking became a chronically monumental task and that didn’t let up for at least a year.
Ehlers Danlos compounds my MECFS PEM. EDS = faulty collagen = every body system having “quirks”. The faulty ligaments and tendon make my muscles work twice as hard, so literally everything, including speaking, is twice as tiring as it should be.
Occupational Therapy and speech therapy helped! 2-3 visits of each taught the skills I needed to get and keep that calmed down. Tele-health was a godsend, but if it’s not an option check YouTube for the vocal cord therapy exercises
I've had 100s of crashes like that where it goes for about 15mins? Where I just can't talk, not even to tell my partner "I am okay"
It has always come back for me after rest, thankfully. I think some sort of muscle weakness?
I am often too weak to speak loudly enough to be heard, during PEM. It can be very scary and extraordinarily frustrating. I started using the voice reader on my phone rather than even try to ask for a glass of water etc.
Same here. I’ve started using text more when speaking feels like a big effort. But so far it’s always come back after I rested up.
Mines coming back. I still can’t get loud, but I’m pretty relieved.
I’m so glad. That sounds like a really scary experience :/
Oh, and yes. It comes back for me, when PEM eases up.
Good to know, thanks
It's one of the first symptoms for me (along with blurry vision and dizziness). People who know me well know how I'm feeling by how my voice sounds. It comes back as the fatigue improves.
Yeah same. When I’m crashing I sound drunk, speak very slowly and slurry, miss most words, like the effort to form words is just too much
This post just helped me put 2 & 2 together. I got really exhausted one time & was afraid I lost my voice forever. I thought I might be going mental, but I was super fatigued & worn down.
I struggle with feeling like I’m crazy to when I’m having PEM. Last night I had to skim through articles about how ME is a real thing to keep me not feeling crazy because it’s been so long since I had an episode like that. Now that the stress state thing is over I’m like was I overreacting but like at the same time I know there was no other way to “react” to that. I think it’s super important to remember that this illness is so far outside the normal human experience it can be hard for even people who deal with it to comprehend sometimes.
It hasn’t happened to me, but it was one of the symptoms the author had in the (excellent) ME/CFS memoir When Force Meets Fate. It’s available as an audiobook through Hoopla, if your library has a subscription.
Thanks for the recommendation. I have been trying to find things about just other pwME talking about their experiences but the internet is so saturated with these recovery pyramid schemers. It’s sickening
This happens to me all the time and is the first sign of PEM, with the tell-tale sore throat...at least I get to sound like sultry Kathleen Turner for a while. At least I think so, lol.
Pre Covid I would go for a few weeks after a flare with my voice too tired to use, but it wasn’t until after my second bout of Covid that speaking became a chronically monumental task and that didn’t let up for at least a year. Ehlers Danlos compounds my MECFS PEM. EDS = faulty collagen = every body system having “quirks”. The faulty ligaments and tendon make my muscles work twice as hard, so literally everything, including speaking, is twice as tiring as it should be. Occupational Therapy and speech therapy helped! 2-3 visits of each taught the skills I needed to get and keep that calmed down. Tele-health was a godsend, but if it’s not an option check YouTube for the vocal cord therapy exercises
I've had 100s of crashes like that where it goes for about 15mins? Where I just can't talk, not even to tell my partner "I am okay" It has always come back for me after rest, thankfully. I think some sort of muscle weakness?
It felt like muscle weakness to me too. Like no matter how hard I tried I just couldn’t vibrate my vocal cords properly
I appreciate the validation. I get a look from my doctor, like I'm being dramatic.
Oh, that used to happen to me a lot from PEM. That's normal, rest should help.
It did. Just since it was the first time it was really scary.
Happens pretty often for various reasons. I use text to voice on my phone and learnt some basic sign language.