"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Sleep Apnoea Forum Bringing Help + Support to the Patient
Pain and CPAP
Hi all I am a chronic pain sufferer (Fibromyalgia) who was diagnosed with OSA in January of this year.
I've been on CPAP for 2 months and I'm delighted to report that a lot of the bone-crushing fatigue has gone. However, I'm now trying to address some of my pain issues. I had managed to reduce my principle pain meds by a third but this is slipping as my pain levels are increasing. I've been under a lot of stress recently - lost licence and at the same time had to host a massive event for work at Venue Cymru in Llandudno when I work 60 odd miles away in Chester, and live somewhere in the middle with on public transport lol - so that may have had an impact on it.
If people don't mind sharing, I'd really like to know of other members' experiences of pain management whilst under CPAP (I sometimes have ripped my mask off during the in agony in my head and on my face). It's not just about the CPAP though, it's whether anyone reports massive improvements (or indeed any improvements) in pain levels which appear to be attributable to CPAP, or lifestyle changes you have made as a result of your diagnoses.
This is a real personal ask, I know. But I'd really appreciate any information you are willing to share as I'd like to do some research on this. I'm at the start (literally) of this but feel that some real life examples will enable me to have a starting point that isn't biased purely to my own experiences.
With grateful thanks to you for reading my lengthy ramblings.
Manda Liv.
Views: 175
Replies to This Discussion
-
Permalink Reply by Kath Hope on
-
It's great that you're already experiencing the bone-crushing fatigue symptoms lessening Manda, but stress and sleep are both contributory facts to pain (as I'm sure you know) so all of this extra stress won't be helping. However, the fibro pain does usually improve, or even goes completely with good CPAP therapy. Also, there are lots of sufferers of fibro in the Facebook group you joined today, so it would be worth posting this question in there too.
-
Permalink Reply by Terry Vella on
-
Manda, I wasn't diagnosed with Fibro but it felt like it. My sister has it and last year I got her diagnosed for sleep apnea and she has it as well as me. My aches and pains really started lifting after 3 - 6 months of CPAP use, that seems to be about the average time most people really start to feel the real affects of constant CPAP use.
After my sister had been on CPAP for about 3 months, My brother in law came up and hugged me and said my sister has never been so good and thanked me for getting her diagnosed and for helping her get a machine, he said when they used to go out she would stay in the car because there was so much pain she could hardly walk, now when they go shopping, she leads the pack, it bought a tear to my eye.
Just stick with it, our bodies take different times to heal depending on the serverity and length of time people have had sleep apnea for.
-
Permalink Reply by Barbara Hart on
-
Manda, I too have had FMS for over 20 years, so can sympathise. I also have only been on CPAP for a short time, just a month longer than you. I also was suffering from the violent headaches during the night and first thing in morning, but this issue seems to have got a lot better recently, my head is particularly sensitive to touch, and have been a lot better using the swift FX Bella mask with the ear straps. I do still wake in the night with pain, but my day time sleepiness has reduced greatly. Stress will certainly make your Fibromylgia worse,
I still take my painkillers regularly to try to keep pain levels down, I am very sensitive to most modern day pain relief and low dose antidepressants, so stick with old fashioned Co-Dydramol. I am also a believer in alternate therapies, I have been using aromatherapy, but find just to start with one drop of chosen oils, I put it on a cotton pad near the air intake, NEVER in machine, in my case I find a drop of Lavender, with Rosemary and or Marjoram helps. I get my essential oils from G. Bald wins &Co.
There are lots of sites on the internet about the connection between FMS and OSA, some helpful, some confusing.
I find like you, times of stress make my pain levels soar, I just kept going with cpap and my headaches and migraines have greatly reduced.
Hope this is bit useful,
Barbara
-
-
Oops don't know what happened there, I seem to have made Terry's reply show up twice, I am not good with computers, sorry
Barbara Hart said:Manda, I too have had FMS for over 20 years, so can sympathise. I also have only been on CPAP for a short time, just a month longer than you. I also was suffering from the violent headaches during the night and first thing in morning, but this issue seems to have got a lot better recently, my head is particularly sensitive to touch, and have been a lot better using the swift FX Bella mask with the ear straps. I do still wake in the night with pain, but my day time sleepiness has reduced greatly. Stress will certainly make your Fibromylgia worse,
I still take my painkillers regularly to try to keep pain levels down, I am very sensitive to most modern day pain relief and low dose antidepressants, so stick with old fashioned Co-Dydramol. I am also a believer in alternate therapies, I have been using aromatherapy, but find just to start with one drop of chosen oils, I put it on a cotton pad near the air intake, NEVER in machine, in my case I find a drop of Lavender, with Rosemary and or Marjoram helps. I get my essential oils from G. Bald wins &Co.
There are lots of sites on the internet about the connection between FMS and OSA, some helpful, some confusing.
I find like you, times of stress make my pain levels soar, I just kept going with cpap and my headaches and migraines have greatly reduced.
Hope this is bit useful,
Barbara
-
-
Barbara, I've removed the post that got duplicated. This forum can be a bit confusing, but is out of my control in that respect. If you hit the 'Reply To Discussion' nothing else will show up in your comment, but if you hit the 'Reply' under someone else's post then their comment also shows up.
Anyway, great to hear of yours and Terry's sister's improvements. I hear this all the time from fibro sufferers, and it's a shame they're not all offered a sleep test as standard.
-
-
Thanks Kath, I'm useless with computers, this is the only forum I've ever joined, as it's so helpful for us new to cpap, Facebook would be a nightmare for me.
-
Permalink Reply by Manda Liversage on
-
Hay Barbara that's a great idea. I recall about 20 years ago when I was really having trouble sleeping a friend gave me a mix of lavendar, frankensence and clary sage to put 5 drops in a water thingy heating over a candle for an hour before I went to bed. I slept right through my alarm and didnt' wake until 10\;30 lol
Barbara Hart said:Manda, I too have had FMS for over 20 years, so can sympathise. I also have only been on CPAP for a short time, just a month longer than you. I also was suffering from the violent headaches during the night and first thing in morning, but this issue seems to have got a lot better recently, my head is particularly sensitive to touch, and have been a lot better using the swift FX Bella mask with the ear straps. I do still wake in the night with pain, but my day time sleepiness has reduced greatly. Stress will certainly make your Fibromylgia worse,
I still take my painkillers regularly to try to keep pain levels down, I am very sensitive to most modern day pain relief and low dose antidepressants, so stick with old fashioned Co-Dydramol. I am also a believer in alternate therapies, I have been using aromatherapy, but find just to start with one drop of chosen oils, I put it on a cotton pad near the air intake, NEVER in machine, in my case I find a drop of Lavender, with Rosemary and or Marjoram helps. I get my essential oils from G. Bald wins &Co.
There are lots of sites on the internet about the connection between FMS and OSA, some helpful, some confusing.
I find like you, times of stress make my pain levels soar, I just kept going with cpap and my headaches and migraines have greatly reduced.
Hope this is bit useful,
Barbara
-
-
Thanks for your comments, Kath Terry and Barbara. I'm going to take all this on board and ghost write a book for Kath ;)
-
-
Ha Ha, just seen your comment Manda. You can certainly ghost write a book for me - preferably whilst I'm asleep as it's the only time I switch off from sleep, except when I'm doing it myself
-
Permalink Reply by suzanne erdbrink on
-
Kath you mention a Facebook group? I follow the Facebook Sleep Apnoea page but would love to join the group please?
-
-
Hi Suzanne, and of course you're welcome to view our private group with now over 2,000 sufferers. Here's the link https://www.facebook.com/groups/SleepApnoeaSupportAndAwareness/ and I'll approve you with pleasure
suzanne erdbrink said:Kath you mention a Facebook group? I follow the Facebook Sleep Apnoea page but would love to join the group please?
About
Sleep Apnoea Forum
New to the Sleep Apnoea Forum?
1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!
Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.
Latest Activity
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
"Hi
My first thought is "don't panic"! We're all a bit different, and there are many things that can be tweaked. I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
1st time and I’ve failed the mask leak test
Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Are every small CPAP machines any good?
Travel sized, micro - any good?See More
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep. Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
"Can't say I know about this."
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
"Hi Jonathan, well see my nose is blocked a lot, so I mouth breath which really sucks a lot more moisture and makes my mouth dry. So I put humidity on maximum, which makes for condensation at the mask end, which becomes a demonic reed instrument.Now…"
ResMed AirSense 10 getting noisy
HelloI have an NHS issued ResMed AirSense 10 with heated humidifier. In the last couple of weeks, it's developed an annoying noise, when I inhale. It bothers me a little and my partner a lot! I sometimes get problems if the water container in the…See More
"Hi
My first question is why is condensation forming? I very occasionally get some condensation, may be once a month, but I can quickly run a finger around the inside of the mask, and wipe it away. I use a nasal mask, with the humidifier…"
"11K+? Ok that's probably where I should look then :-)"
"Hi John. Thanks for the compliment as I do my best popping on here, but it's difficult due to us now supporting 25k+ patients at the charity. To be honest, the forum is quiet because most people seem to prefer Facebook and forums aren't as…"
"There's some information here, but generally it's very common and likely due to our anatomy."
© 2024 Created by The SleepGuide Crew.
Powered by
