Anyone with Fibromyalgia and sleep APNEA?

[Goofy Lady]

I am having a difficult time with adjusting to a mask. Anything Ive tried really hurts my face or nose. My face is very sensitive to the touch and any kind of pressure hurts. I have severe apnea and really need to figure this out. I do not have a support team. (doctors or qualified techs). The office I started with is very incompetent. They have made this transition worse, basically hell. I have PTSD just from using them. hahahaha
My insurance has also changed. And thanks to Obama care it sucks and I cant afford to see any doctors for sleep apnea now. So im on my own.
Any help from people who have chronic pain is greatly appreciated!

[Julie]

Are you possibly overtightening whatever mask you try? That can create new small leaks, hurt your face and doesn't allow the silicone cushion to inflate properly. If you are fighting leaks with the masks you have, either they're badly fitted, the wrong size or just not the right ones for you. There are very many options though, including the Sleepweaver Elan which is fabric, and for a small fee Cpap.com will let you try out masks for 30 days. You can get less expensive ones from Secondwindcpap.com, but it's always best to try any mask (esp. full face ones) lying down, as your face changes a lot then.

Have you tried Padacheek.com liners? They buffer the feel somewhat, help with leaks and red marks.

Have you asked any local DME's about trying some out?

Which ones have you tried and what specifically (with those masks) is the problem - they're all a bit different.

What about wearing them (no machine) in the daytime while e.g. meditating, watching TV, etc? What about taking an aspirin or something on a temporary basis before bed for a while?

And I know you were joking, but PTSD isn't much fun for people who do have it.

[story1267]

I've got the whole shebang myself - OSA, fibro, PTSD, plus others, just for fun, 'cause normal is over-rated.

I haven't noticed that the fibro really interferes with things on my face and head - the pain points are elsewhere. However, if your nerve endings are jazzy to begin with - it's definitely challenging to get used to something as invasive (to me anyway - the air pressure) as CPAP.

You'll need to figure out where you can compromise. Have you tried the DreamWeaver? The overall feeling of it is pretty minimal. It can be a leaky bugger but it's lack of hard hardware is a plus.

I second the recommendation of just putting your mask on and going about your business for a while. You might get an idea about an adjustment that makes it more comfortable if you aren't simultaneously worrying about ever getting to sleep...

[Hopefullady]

I have both, yes. Sorry it's been so difficult.
My fibro though is not on my face, it's in my arms legs and trunk. So I can't sleep for long in any position.

For years I slept on stomach and side but as I get a little older (and they make beds crappier), stomach sleeping can't be done for long plus my mask gets in the way. Side sleeping I can only do for a few hours each side due to fibro. I have to sleep on my back some of the night now and that's where my apnea is worse of course.

I'm new to this too and trying to deal with tweaking things too.

Best wishes. Oh - I was also thinking of the dream weaver mask for you.

[story1267]

I have both, yes. Sorry it's been so difficult.
My fibro though is not on my face, it's in my arms legs and trunk. So I can't sleep for long in any position.

For years I slept on stomach and side but as I get a little older (and they make beds crappier), stomach sleeping can't be done for long plus my mask gets in the way. Side sleeping I can only do for a few hours each side due to fibro. I have to sleep on my back some of the night now and that's where my apnea is worse of course.

I'm new to this too and trying to deal with tweaking things too.

Best wishes. Oh - I was also thinking of the dream weaver mask for you.

DH and I invested in a Tempurpedic bed not too long ago. I found it really helps - particularly the hips and sac.re.il.iac (if you're old enough to know the Jungle Book).

[ChicagoGranny]

Anyone with Fibromyalgia and sleep APNEA?

Some things to be aware of.

An important study by Dr. Victor Rosenfeld, a neurologist and sleep specialist, published last year in the Journal of Clinical Neurophysiology gives some interesting insights into sleep irregularities in people with fibromyalgia. He found that 45% of the FM group had obstructive sleep apnea, ...
http://www.fmcpaware.org/sleep-apnea-re ... th-fm.html

The incidence of restless legs syndrome has been found to be in excess of 50 percent of people with fibromyalgia, as opposed to 7% of the general population. Fibromyalgia patients experience improvement in their symptoms of fatigue and sleepiness when restless leg syndrome is treated.

The incidence of sleep apnea in fibromyalgia was found to be 61 percent in men and 32 percent in women, according to a 2013 study published in Clinical and Experimental Rheumatology. A particular variant of sleep apnea called upper airway resistance syndrome is very common in women with fibromyalgia. Treating sleep-disordered breathing improves both pain and fatigue in fibromyalgia.

http://www.everydayhealth.com/columns/r ... -problems/

My prayer today is that you will get your CPAP therapy working well, and that successful treatment of sleep apnea will improve your FM symptoms.

[story1267]

Thank you for sharing those articles, ChicagoGranny. I've been struggling with fibro and non-restorative sleep for years (30 or so). I'm tired!

It's a huge frustration to me that fibro is still seen as a non-entity, all-in-your-head, "disease" by many health practitioners. I have much better results with my alternative practitioners.

I'd love to hear stories from anyone who has tried Lyrica...with good or bad results.

[ChicagoGranny]

It's a huge frustration to me that fibro is still seen as a non-entity, all-in-your-head, "disease"

I don't know much about FM, but it seems to be a collection of some of various symptoms with multiple causes.

I have much better results with my alternative practitioners.

I would be very careful with that. We just attended the funeral of a close friend, age 60, who was being treated by an alternative practitioner. She was drinking "magic water" (Kangen), taking many supplements, using Himalayan salt, taking some homeopathic concoctions and some other worthless things.

She had used CPAP for years, and she convinced herself that she no longer needed it as long as she was being treated by the alternative practitioner. I tried to convince her otherwise, but she was not open to listen.

She began to have that pale face of someone who has been having deep oxygen desats from sleep apnea. Over about three months, she became virtually an invalid. She finally died in her bed between 3 - 6 a.m., which is the prime period for death by sleep apnea.

Up until the end, she credited her alternative practitioner with extending her life. Every time I think about that practitioner, I want to choke him.

Maybe instead of alternative medicine, you should find a traditional doctor who takes the problems of his FM patients more seriously.

[Hopefullady]

I have both, yes. Sorry it's been so difficult.
My fibro though is not on my face, it's in my arms legs and trunk. So I can't sleep for long in any position.

For years I slept on stomach and side but as I get a little older (and they make beds crappier), stomach sleeping can't be done for long plus my mask gets in the way. Side sleeping I can only do for a few hours each side due to fibro. I have to sleep on my back some of the night now and that's where my apnea is worse of course.

I'm new to this too and trying to deal with tweaking things too.

Best wishes. Oh - I was also thinking of the dream weaver mask for you.

DH and I invested in a Tempurpedic bed not too long ago. I found it really helps - particularly the hips and sac.re.il.iac (if you're old enough to know the Jungle Book).

Hi cheryl
First off, what does "DH" stand for? I see this often and have wondered.

I have such severe C-PTSD that I have a weird thing call Multiple Chemical Sensitivity (MCS) and the last time I tried to use memory foam my lips blew up. It was terrifying. Spent all day in the ER.
Can't be in a new car or wall-to-wall carpet for long or around perfume etc. Honestly? If I could use memory foam still I might not need CPAP. Maybe.

I do believe a lot of these odd borderline-auto-immune illnesses and inflammations are on the same spectrum.

[49er]

Thank you for sharing those articles, ChicagoGranny. I've been struggling with fibro and non-restorative sleep for years (30 or so). I'm tired!

It's a huge frustration to me that fibro is still seen as a non-entity, all-in-your-head, "disease" by many health practitioners. I have much better results with my alternative practitioners.

I'd love to hear stories from anyone who has tried Lyrica...with good or bad results.

Hi Story,

I have never tried Lyrica but here are some "for what it is worth" stories.

A few years ago, I listened to an old podcast by Dr Avram Gold, a sleep doctor based in New York. A significant percentage of his patients seemed to have fibro and pap therapy was very helpful for many of them. Sorry, I don't remember all the specifics so forgive me as I am trying to recollect the details as best I can.

Anyway, he said this about UARS patients which perhaps could be applicable to people with Fibro because isn't there some type of possible connection? He feels that UARS patients have an overactive limbic-system response that makes it difficult to deal with the sensory input of the cpap and felt the only drug that might work is Lyrica. At the time, he didn't prescribe it due to lack of proof. Would that be causing the non restorative sleep, I have no idea but I wanted to share that.

Regarding sleep, I know of a sleep doctor unfortunately not in my area who uses a microdose of lyrica to reset the sleep systems of people who have had their sleep cycle destroyed by being on psych meds for several years. They most likely don't have fibro but obviously, they haven't been getting great sleep. Unfortunately, I haven't seen any scientific studies to support what he does except for knowing about two people who improved directly going this route. But of course, two examples don't prove anything.

Finally, take a look at this link regarding the possibility of using lyrica off label for sleep.

http://thesavvyinsomniac.com/pregabalin ... nLm0pMrLIE

49er

[story1267]

It's a huge frustration to me that fibro is still seen as a non-entity, all-in-your-head, "disease"

I don't know much about FM, but it seems to be a collection of some of various symptoms with multiple causes.

I have much better results with my alternative practitioners.

I would be very careful with that. We just attended the funeral of a close friend, age 60, who was being treated by an alternative practitioner. She was drinking "magic water" (Kangen), taking many supplements, using Himalayan salt, taking some homeopathic concoctions and some other worthless things.

She had used CPAP for years, and she convinced herself that she no longer needed it as long as she was being treated by the alternative practitioner. I tried to convince her otherwise, but she was not open to listen.

She began to have that pale face of someone who has been having deep oxygen desats from sleep apnea. Over about three months, she became virtually an invalid. She finally died in her bed between 3 - 6 a.m., which is the prime period for death by sleep apnea.

Up until the end, she credited her alternative practitioner with extending her life. Every time I think about that practitioner, I want to choke him.

Maybe instead of alternative medicine, you should find a traditional doctor who takes the problems of his FM patients more seriously.

I'm very sorry about the loss of your friend. There are quacks and fools in every field and caveat emptor is the first rule of every interaction with every practitioner. I don't rely on my alt. practitioners to treat every problem I have and I don't blindly follow their advice. Searching for truly helpful help is an exercise in advocacy. I wasn't aware of the connection between fibro and OSA. That definitely calls for more research. And I think I do need a new doc who will work WITH me on my fibro and related issues.

[story1267]

Thanks 49er, for your input. I won't rule anything out at this point. And I have a really responsive and knowledgeable psychiatrist who will definitely answer questions for me regarding Lyrica - particularly as it applies to my own situation.

DH = Dear Husband.

I agree that these fibro, multiple sensitivity, etc. issues all do seem to be connected.

[Goofy Lady]

WOW! Great input from everyone.
Thanks for all your responses and suggestion.

If I offended anyone with my remark to PTSD, I apologize. I have a sister with it, and I work closely with people with all kinds of disabilities.
I was trying to get across how badly i have been treated from my sleep center and that I have no support system for CPAP. I live in a rural area and only one doctor for sleep is near enough. So, Im on my own for a while.

I think my face pain may come from my cervical myleopathy?

I will try all suggestions and get back to everyone next week.

thanks again,

[OkyDoky]

If you can breathe through your nose and can use nasal pillows, you could look at the Tap Pap. It is held in place with a mouth guard and eliminates the headgear.
https://www.cpap.com/productpage/tap-pa ... roved.html

[gtpjimgammon]

Hi, I'm a newbie.

I have chronic pain (fibromyalgia) and was just diagnosed with severe sleep apnea. I get a machine soon. I have mixed emotions on it all, but I'm hopeful. I've suffered for years with a doctor who just prescribed sleeping pills and opiates

My research shows that pain and sleep loss feed off one another, more pain = poorer sleep and poorer sleep = more pain.

I am curious if others with fibro have seen the all-over body pain decline once they got a CPAP.

I take Tramadol for the pain, just to tolerate it and be able to focus on my work. The pain is debilitating otherwise. I hurts so much I cannot get to sleep, I'm so uncomfortable I toss and turn until I pass out from fatigue in the wee hours of the morning. Thank God for the Tramadol, but I want to take less or none one day.

Thanks!

Jim