Fibromyalgia Action UK
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I spent a very tiring night at Papworth Hospital and came home with a new friend who I have named BOB. BOB is my new CPAP (continuous positive airway pressure) machine who is to be my friend for the foreseeable future.

The consultant said He wasn't exactly sure what I was doing but I had had to have the machine turned up from number 5 to 14 in the night and I still stopped breathing (the other people only needed it turning to 7!) He asked me if I had restless legs and it appears I have and apparently needing the loo lots of time in the night is a symptom of sleep apnoea.

I have to go back to spend the night at Papworth with BOB in 6 weeks to be monitored again so I don't know what they'll do then.The consultant agreed it could be to do with Fibro as I can feel my throat collapsing in the day as well if it is I don't know that they can do anything! Why do I have to do strange things?

14 Replies

Oh my goodness. It sounds like BOB is going to be your new best friend. You don't do things the easy way do you so it is good you have BOB with you.



LOL no I don't ,things seem to be getting more dramatic the older I get.good job I have a sense of humour! (oh, and BOB of course!)


BOB is going to help you so much how absolutely wonderful. Youb will be able to relax as BOB will make sure you are ok . We all could do with a friend who ehaves so well :) Take care xgins


LOL! had a reasonably good night with BOB he was very quiet and stayed put .I woke with a big bruise under my eye because the strap was too tight but I can sort this.I also had severe wind and pain under my shoulder blades so I guess I was air gulping.It feels really laboured to breath without BOB so I hope I can deal with this over time.


i use an oxygen concentrator 24/7. i was really worried about sleeping with it, but adjusted in just a couple of days (or nights). Good luck with it all. Hopefully it will help to feel less exhausted! xx


Thanks,it's reassuring to know that I can get used to BOB with time!


I don't have a name for my CPAP machine, apart from it's a pain. I have used it every night for exactly 16 months now, it took months to find a suitably comfortable mask and learn to sleep breathing through my nose instead of my mouth. The only reason I persevered with it was because I had an AHI of 62" which meant I stopped breathing, or had extremely shallow breathing on average of 62 times per hour over a period of 8 hours sleeping, for more than 10 seconds each episode. That's more than once a minute!

The main symptom of Obstructive sleep Apnoea OSA is snoring! But when my OH found that I had breaks in my snoring that were not in fact me giving him a rest from the noise, but I had in fact stopped breathing, it was as much a shock to him as it was to me. So for him I use it.

There are different levels of OSA under 5 apnoea per hour is considered normal,

5-15 is low, 15-30 is moderate and above 30 apnoeas (or hyponoeas - shallow breathing), per hour is considered severe.

So when I was told my reading after a sleep study was 62 you can imagine my shock! my sleep study was done without the CPAP machine initially.

The machine i have is auto pressure so it will self adjust between 4 and 20 as and when required. I think my pressure averages around. 12 to 13, but the main thing is it has bought my AHI ( Apnoea Hyponoea Index) down to below 5.

if i don't use the machine I know it will be back up to severe again. Sadly for me, my machine is for life.

I have heard of many people who also have OSA and Fibro and once they start using the CPAP machine the symptoms of their fibro clear up. Basically if you are stopping breathing whilst sleeping your muscles are being starved of oxygen, so no wonder we are in pain.

I have also recently heard that someone's fibro symptoms improved within a week of using CPAP therapy. I just wish that was me! Unfortunately because I have other health issues besides fibro I haven't been relieved of any of my symptoms, but thankfully I have with OSA.

It's a scary thought knowing that you are lying next to someone who has stopped breathing, so for me, I have made myself use the machine for the sake of not just my health, but my OH too!

If any of your partner's snore badly and they have intermittent gaps.....please do get them checked out. Just ask your GP for a referral to a sleep clinic to be checked. There is a ton of info online, but it's a very hot topic at the moment amongst GP's. when I was first diagnosed even my GP nearly fell off his seat when he saw the results as he didn't suspect that at all. So there we are, it's one of those hidden conditions and when snoring tends to be a joking subject, it can actually turn out to be very serious indeed.

Left untreated can lead to heart disease, uncontrollable high blood pressure, diabetes and strokes. So it's worth being checked out.

Amanda, I'm so pleased you have done the right thing, I hope you get used to 'BOB' and you both become good friends :) my sleep consultant said to me that finding the right mask is a big key to remaining compliant, he said just think about it like I may have to kiss a lot of frogs before I find my prince, he will just keep supplying the frogs until I find my prince :) I did.. In him and in a Phillips True Blue mask!

Having the support of a good consultant for me was then biggest key!

Although i haven't driven in more than a year I don't want to lose my driving licence. By being diagnosed with OSA you have to notify the DVLA's medical centre who will then check your compliance with your Consultant before they confirm you are fit to keep your licence,

It's been a minefield of learning and when you still aren't feeling great due to Fibro and other conditions, it's a lot to take in.

After all all that I need a sleep lol xx


I was given a mouth and nose mask straight away as I told them I breath through my mouth.It still feels a bit loose near the chin though so I'm not too sure of the fit.I'm going to ask my numbers next time I go in 6 weeks...which is right next to my birthday so I hope It just misses it!! I don't think the consultant knew quite what I was doing which made me laugh as my mum said that he would say that! I really hope I improve during these 6 weeks I didn't have a problem wearing the mask but I felt so awful when I woke this morning in fact I haven't even got dressed and I'm in bed again now!

Yes it's a good job I got checked,I only did it because I'm going through a list of niggles with my GP to try to improve my fibro.


I'm not dressed either. i have more days in the week like this than not, but its a combination of things. its just more comfy in PJs.

I have tried all sorts of masks and have now trained myself to keep my mouth closed lol not easy loll lol don't have the mask too tight, you need a light seal but that should only be when you lay down.

What i bet they have forgotten to tell you, they always do, but You Tube is great for showing how to wear a CPAP mask. Sit on edge of bed and put mask over your face, mask should be lose. Put the machine on, or it may come on automatically depending on the machine,

Then lay down. If you can, place tubing over the back of your head board, when you are laying down then lift th mask slightly and let it full back into place. if its blowing air out oof anywhere adjust the straps accordingly. I think they are all velcro now so this should be ok for you to do. it makes my arms ache though, when you lower the mask back again it should form a nice seal around your face, but it must not be tight.

Its been a while since i looked on you tube so i don't have any links for you sorry, but there are plenty. i use a phillips Respironics machine and mask so i use their website and they also have a separate support team. If you have a machine that has a screen ask the clinic to show you how to read off your settings. depending on the machine certain masks need different settings. I have only used this one Kind, but a few different masks, but I find phillips true blue which is just a nasal mask was the most comfortable for me. If you are told you have to use it long term I can put you in touch with a forum which is run by a lady and she is so helpful. she and my consultant helped get me through. You were lucky that you have been ok on your first use. I had terrible panic attacks to start with.

If i can offer any help to you please let me know. I wouldn't say I'm an expert by any means, but I have had 16 months solid use. I know mine is for life, i dont have any choice, but Initially i didn't want to use the therapy, but scared myself into going back to see the consultant and through many episodes of tears he has got me there. he can't sure my fibro unfortunately but i do know someone who has also seen him has had very good results in reliving her symptoms.

its a mazing what having no sleep does to you! And I thought I used to sleep, but I didn't know i kept stopping breathing.

take care now and as i said if i can help in any way just send me a message. xx


Thanks so much! you have let me know some helpful things and I'll definitely ask if I need help thanks again x


Thanks so much! you have let me know some helpful things and I'll definitely ask if I need help thanks again x


well I woke this morning with 2 bruised eye sockets from the mask! this is going to be fun,I think I'd better ring the help number because if the mask is any looser it will leak.


It may sound silly, but the tighter it is, the more chance you have of it leaking air. They are designed to have a certain percentage or air leakage. If whilst laying down you lift the mask up then let it gently fall over the natural curves of your face, it should form a good seal. I wear mine loose and ony get air leak recordings if it's too tight. After I wash the headgear and reconnect it I often don't put it back in the right place so get a leakage recording.i check my machine every day to read off the figures so I have my own record of how that side of my health is doing. If I notce the apnoeas rising I want to be able to tell my consultant anything that has happened to cause it.

If you toss and turn a lot and you don't have your hose clipped up behind the headboard, or you don't have a mask with a swivel on the pipe will be all effect leaking too. I lay flat on my back all night and may just move my head from side. I am unable to turn in my sleep as I can't physically move once I'm laying down, so I guess that it an advantage to using the CPAP .

If you sleep on your side, may be you are knocking the mask off with your pillow. Google CPAP pillows uk and you will see a company that sells special ones with cut outs. Also make sure you clean your mask daily, this also ensures a good seal and prevents any bacteria build up..

It's a pain to have to go through all of this but the consequences of non compliance are far worse.

Keep at it, I was In a right state when I first started using mine so I know first hand it's possible to get out the other side. It will never be my best friend but its caring for me :). Xx


Hi, I had a call from a cpap nurse (?) this morning she's going to bring another mask today .My machine doesn't have read outs on it so I don't know how I'm doing.I also don't have a head board (can't afford one!) so my tube just trails next to me.Is it ok to clean my mask with fragrance free wet wipes like Huggies do you know?

I have absolutely no trouble sleeping with the mask on it's just that I knock it off or push it against my face when I toss and turn hence the bruises.Once I wake I then don't seem to settle again.The second night was perfect,I slept right through from 11pm to 6am but not since which is strange.


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