Congestion and not the traffic kind! - Fibromyalgia Acti...

Fibromyalgia Action UK

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Congestion and not the traffic kind!

Seascapes31 profile image
12 Replies

Hi everyone I was diagnosed with fibromyalgia in 2018, however I believe it started years before. I have also gained 5 stone and I'm on waiting list for bariatric surgery.

I've used a cpap machine as I have sleep apnoea diagnosed in 2016.

Just wanted to ask if anyone has had similar issues with horrible cough and congestion/phlegm whilst using their cpap machine in case theres a link between cpap machine use?

Since around October 2023, I've had 3 x different antibiotics to try and clear congestion/phlegm that I've experienced with horrible cough.

After using the cpap machine for that many years, I discovered by chance that it has a filter that needs changing every 6 months at least, no one had mentioned this to me! I also tried a humidifier that connects to the machine in case dry nasal passages was causing the problem. I was hoping to have the congestion solved but alas no!

So long story short, after trying all these things and as stated 3 x different antibiotics and no improvement apart from the phlegm (sorry to be graphic), changed colour slightly with each antibiotic!

The GP has given me a peak flow meter to use for 2 weeks and I'm now going down the route of seeing the respiratory nurse to rule out asthma.

I wanted to ask everyone if they've experienced anything similar connected to fibromyalgia (I know many others use cpap machines), and if you've found any resolution please?

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12 Replies
Yassytina profile image
YassytinaFMA UK Volunteer

Hello, I have a Cpap machine, I ve been on it for around 14 years , more the last year I am struggling too keep it on a full 7 hours (I’ve had no end of dry Sinus infections, I am heady in the mornings ,although most of the time it does wear off, I am very good with keeping everything clean, and I’ve come of the humidifier as it keep gurgling doing the nite and spitting water in my face 😩never had this problem before, yes the filter s (lung function department should really be telling patients about this. I gained weight over the last few years, I am thinking sometimes it’s a combination of age 62 , medication , giving up my swimming , and the naughty treats in the evening s😉apparently I have sleep apnea as I have a small pallete (which I read up on ) xx

Seascapes31 profile image
Seascapes31 in reply toYassytina

HiyaThanks for your reply and I read up on using the humidifier and watched online you tube video about it, apparently if it spits in your face then you need to adjust the humidity level on your cpap machine, possibly you need to lower to the next level, so hope this helps?

Yes I'm wondering how many other cpap users don't know about the filters!

Apparently there is heated tubing you can get too.

I've been now using peak flow meter as instructed, what a faff?! However I will see how it goes.

Yassytina profile image
YassytinaFMA UK Volunteer in reply toSeascapes31

Thanku xx

Saraia profile image
Saraia

idk if this will help, but you can try it. Tub of hot water with Vicks in it. Put a towel over your head, so it’s like steam inhalation in a sauna, and breathe in the hot steam for 30min before bed. It should help you breathe.

I do this when my sinuses are blocked in general.

Seascapes31 profile image
Seascapes31 in reply toSaraia

Thank you, I'll look into that x

Janeshelley profile image
Janeshelley in reply toSeascapes31

I have just started using Vicks on my chest/neck area before bedtime to help with my cough. Ventolin 4 x daily helps with my shortness of breath. I believe sugar is the root cause of most of my health problems and my weight gain over the years, so trying to ween myself off. Hard to do but determined to succeed. I take meds for Fibromyalgia and migraine plus vit and min supplements. I have frequent rests during the day and nine hours in bed at night. Have had to wave goodbye to holidays, planned special events, keep-fit classes, long walks and a social life, but I am a ‘happy to be at home’ person, which is just as well. 😍

Saraia profile image
Saraia in reply toJaneshelley

1st Swap sugar for Demerara sugar (not brown sugar).

And then move to honey and/ or dates as sweetener wherever you can.

Trying to stop having sugar makes you have severe sugar cravings, (my body craves sugar 24hrs after I ate something sweet because it naturally produces insulin at that time, expecting the sugar high). So it’s best to ween yourself off with alternatives.

Unless you’re super human and have extremely impressive resistance. Lol!

I know I sure don’t! Hehe!

Seascapes31 profile image
Seascapes31 in reply toJaneshelley

Thanks for getting in touch, that's interesting you mentioned sugar as I'm starting to wonder if something in my diet is not helping my cough ad well as other things and yes definitely weight gain!Good luck

Joan161 profile image
Joan161

Have you tried a cough medicine with guaifenesin its very good at loosing phlegm and helping cough it up. Anytime I’ve been phlegmy from cold or virus I used it. Also do you take vitamins? A really good one is vitamin c with quercetin you can get it at Holland and Barrett. Taking high dose vitamin c and Quercetin really good to boost your immune system. The Quercetin is anti inflammatory aswell.

Then other vitamins to help your immune system: vitamin d and zinc. Also another good supplement is NAC you can get it out of Holland and Barrett too, it’s very very good for the lungs (can ask in your local pharmacy about NAC and any medications your taking before buying).

I find supplements help me when I’m sick to fight it off. I stay on vitamin c and the rest even when I’m not sick. I just take a lower dose. I find I get sick more often since having fibromyalgia.

Was really good too someone said to inhale steam. It’s so helpful to break up phlegm too.

Hoping you feel better soon and it clears up for you.

Seascapes31 profile image
Seascapes31 in reply toJoan161

Thank you!I hadn't thought of steam inhalation and I'll look into the other supplements too x

Lillylilac profile image
Lillylilac

Hi Seascapes31I get alot of phlegm too and cough. My GP referred me to the respiratory department when after having a CT scan and broncoscopy (sorry not sure if that's how you spell it) he said I have bronchiectasis. I still have the phlegm and cough but at least I know why now. Like others have said I take vitamins when ill and do steam with vicks. I find it helps. Hope you find some relief from somewhere or something. Love and gentle hugs

Lillyx

Seascapes31 profile image
Seascapes31 in reply toLillylilac

Thank you for replying, I'll definitely be looking into that and giving steam a go, hope you're having a good day!

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