Sleep apnoea??: Hi Along with most of... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Sleep apnoea??

4 Replies

Hi

Along with most of us with hEDS and associated Fibromyalgia I get bouts of dreadful fatigue

I am tired all the time and her days of fatigue when I wake feeling I could cry as I am so tired

As we know it is different from just feeling tired and difficult to explain to those who don’t get it.

Since wearing my Apple Watch to monitor my sleep along with some different apps the couple I have just confirm what I already know

I wake frequently either to wee or with hip/ knee/ shoulder etc etc pain

I also have wakenings showing when I don’t know I am awake according to my watch

For as long as I remember ( and many years pre diagnosis) I get occasional episode when I wake up in a panic unable to breathe. I try and keep calm, realise I can breathe and go back to sleep.

This may happen every month or so or occasionally more often-

Very often I don’t remember this until my hubby reminds me in the morning.

Because if this About 20 years ago I was investigated for sleep apnoea where I had to wire myself up to a home monitoring device one night- and of course - typically it didn’t happen that night!

So it was concluded that I didn’t have sleep apnoea.

Fast forward many years and my diagnosis and I do wonder whether these episodes are caused by floppy tissues in my throat causing my airways to block and then I wake up and breathe.

I read an article this evening in the daily paper about sleep apnoea in women and wondered whether anyone else had any issues with this similar to mine?

For the record I do snore according to my phone and my hubby! But generally that’s only if I’m on my back

Others insights into this would be useful for my next visit to my GP!

My GP is amazing, and has done every blood test under the Sun to find causes of my fatigue and all came back normal.

But now I wonder could this be the simple answer?

Interested to hear others’ opinions

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4 Replies
cyberbarn profile image
cyberbarn

We wondered if my son had apnea as I could sometimes hear him stop breathing. He had the equipment at home like you and his episodes didn't meet the threshold. That is, they were happening, but not often enough to cause his fatigue. So they referred him to a sleep clinic, who decided because he doesn't fall asleep during the day he doesn't have an underlying sleep disorder. So he has been referred to the fatigue clinic. I am half expecting them to refer back to the apnea clinic!

One thing that did annoy me was that they have dismissed our Fitbit and Oura ring data. however there is a good video presentation on fatigue and EDS that thinks the data from this wearables are valid:

chronicpainpartners.com/web...

BadHare profile image
BadHare

There have been a few recent, as well as ongoing discussion in the Thyroid UK forum regarding FM being undiagnosed hypothyroidism. My sleep is still disturbed by pain, but I no longer wake up gasping for air since taking thyroid hormones & ensuring I have optimal nutrient intake & levels to ensure they work.

If I were you, I would ask to be referred back to the sleep clinic. I was diagnosed with sleep apnea a year ago myself. I’m a female who doesn’t snore but still was diagnosed with Apnea. EDS is linked with both obstructive apnea and central apnea.

Hope you get the answers you need😊😴

Taurea profile image
Taurea

I have the same issue, waking up unable to breathe. A doctor told me it was caused by acid reflux which I didn't quite understand but once it was explained by an ENT person I think they are probably right. Acid touches on the opening of the throat which causes it to shut in a similar way the throat works to stop food going down the wrong way into your lungs. More recently I have had episodes where acidic juices rise up into my mouth causing me to choke while sleeping and I think what was happening before was a subtler version of that. It is a possible explanation for what is happening to you but each person is different so it would be best to get it checked out.

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