CPAP 1 week in

[IdasMum]

Just wanted to say that I am very happy and so relieved to have this machine.

I hadn't realised how I must have been panicking as I drifted into sleep.

I am also thinking I have have had SA for years, way before PMR.

My main reason for this update is to share this. Before the CPAP machine I could be up for the loo x5 per night...have been this way for a long time.

Now.....I don't get up for the loo! What intrigued me and made me search was that when I did go to the loo, there was always plenty of urine....so how come I now am not making so much.

sleepapnea.org/resources/pu...

"Nocturia, or nocturnal urination, is sometimes a symptom of sleep apnea. In fact, nocturia among younger individuals--who are less likely to have other medical causes of nocturia--is a strong indicator of sleep apnea. While the precise relationship has not been thoroughly studied, it appears that the most likely reason patients with untreated sleep apnea have more frequent urination at night is related to the increased pressure in the right side of the heart. This increased pressure is usually the result of low oxygen levels in the bloodstream caused by the apnea events: when oxygen levels fall, the heart works harder to get oxygen to the brain.

An increased pressure in the heart is a sign that there is too much liquid in the body: when the heart receives the stimulus of the increased pressure, higher levels of a hormone called atrial natriuretic peptide (ANP) are secreted. ANP is a diuretic that is associated with the increased need to urinate.

When sleep apnea is effectively treated, nighttime urination is also reduced. Studies have shown that ANP levels in patients with untreated sleep apnea are increased and levels reduced in patients using CPAP effectively. Remember, not all causes of frequent urination are related to untreated sleep apnea; prostrate problems, for example, may cause increased need for urination. Discuss any concerns you may have with your doctor. "

This may be helpful to others.

[SheffieldJane]

Thank you for posting this. It is interesting and potentially useful. It's good to get an explanation for some of the oddities we experience.

[PMRpro Ambassador]

You aren't the first person to wonder about a link. Glad it is all improving though!

[Soraya_PMR]

"I am also thinking I have have had SA for years, way before PMR."

I wonder if this would have been a contributory factor to PMR???? I'm sure it could be considered a body stress.

Hope the CPAP continues to make you feel better. A good sleep is healing, fingers crossed this has a knock on effect to your PMR.

[Hidden]

I will concur with the lack of getting up to the loo. Since getting my dream machine which I will never give up I feel so major better. I do not get up for 8-10 hrs now. It feels like recuperative sleep to me. I am glad I have the mask with the hose off the top of my head. I hardly know it is there.

The weight I gained is all in my chest abdomen and neck. So it wasn't a far stretch to think I might have sleep apnea. Oh and yah I hardly ever have to take a nap any more.

Thanks for posting.

[IdasMum]

8 hours last night, unheard of!

Yes, I really wonder whether the SA caused the PMR>>>I guess time will tell.

I love the machine and hardly notice it now. So good to be unconcerned about breathing even though I was unaware I wasn't breathing (quite as much as the test showed).

[enan-illuc]

Hi Idasmum,

I also use a C-PAP machine and I think it is great! I sleep better and wake up more rested. I am told the decibel level of noise in my neighborhood has dropped since I have the machine (just kidding).

Enan

[IdasMum]

PMRpro I am sure you shared a link with me to a SA discussion site. I thought I'd bookmarked it and now can't find it....can you help please?

[PMRpro Ambassador in reply to IdasMum]

Honestly have no idea what it was! If you google sleep apnoea forums you will get several links to message boards - maybe you would recognise it?

[tangocharlie]

My rheumy actually recommended going for a sleep apnea test and sure enough it showed I do have sleep apnea, to my surprise. It turned out I was waking, without realising, 37 times an hour so never getting any deep sleep. I also had been going to my GP complaining about waking up and needing to go to the loo frequently in the night and had been prescribed tablets for it, which did nothing, but it seems now I was waking up anyway and hence needing the loo, not the other way round! Since getting a CPAP machine about a year ago I get much better sleep. It still takes ages to get to sleep (despite fatigue - why is that?) but once I'm asleep I don't wake up in the night. I also have a humidifier attachment built in which stops the dry airways. I'm still always tired though.

[PMRpro Ambassador in reply to tangocharlie]

The always tired bit now is due to the fatigue of autoimmune disease - and it isn't cured by a good sleep. If only!

[tangocharlie in reply to PMRpro]

Yes it doesn't matter if I get 8 or more hours of sleep, I'm still always tired. I fall asleep about 5pm often, but try and resist naps because no matter how tired I am, when it's time for bed I'm lying wide awake for hours! I've just read an article on fatigue but it seems it still baffles the medics even though it's a common part of any autoimmune disease. Looks like it's something to do with cytokines whatever they are but I've not Googled that yet! sjogrenssyndromeinfo.com/fa...

Of course as I'm a woman it's all down to stress/depression/getting older/hormones nothing to do with having a medical condition Another academic paper I read says CBT would help. Their trial consisted of 12 people who had an AI disease. I don't know why the experts don't trawl forums like this to get the real picture of living with our conditions!

[PMRpro Ambassador in reply to tangocharlie]

You'd think wouldn't you!

Part of the fatigue is simply the fact that the immune system is attacking your body and causing damage to tissues - which presumably creates toxins that make you feel unwell. Like flu except then the toxins are due to the pathogens being killed off.

[Hidden]

Thanks for this post. I will be exploring it further. I don't see quite as bad now in terms of loo but my Fitbit has shown me awake or restless 50times in a 5hr sleep sometimes. As the fat around my neck has started to shift, as pred goes down, it feels better but I am lucky if I get 5 hours a night at the moment.

[tangocharlie in reply to Hidden]

The test is easy and painless, they just give you a monitor to wear overnight which records how you sleep.

[Hidden in reply to tangocharlie]

Thanks. Getting the Dr to refer me will be a nightmare but one can hope!