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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
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Permalink Reply by Kath Hope on
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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.
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Permalink Reply by Terry Vella on
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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.
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Permalink Reply by Barbara Hart on
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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
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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
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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.
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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.
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Permalink Reply by Manda Liversage on
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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
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Thanks for your comments, Kath Terry and Barbara. I'm going to take all this on board and ghost write a book for Kath ;)
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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
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Permalink Reply by suzanne erdbrink on
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Kath you mention a Facebook group? I follow the Facebook Sleep Apnoea page but would love to join the group please?
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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?
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