Anyone with Fibromyalgia and sleep APNEA?

ChicagoGranny wrote:

story1267 wrote: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.

story1267 wrote: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.

Scary story... thanks, Granny. Just a question relating to Fibromyalgia: what is the percentage of males vs females in the general population I did note that

gtpjimgammon (jim) posted a reply with some personal info.

Two more mask recommendations:

1. A Fit Life total face mask. This is a large mask that goes from your eyebrows to in front of your ears and down to your chin. It seems to me that the pressure from this mask would be spread out over a large area and less likely to be uncomfortable. https://www.cpap.com/productpage/respir ... dgear.html

2. A DreamWear Mask--This mask is made of silicone tubes that are very soft and pliable. The hose attaches at the top of your head, giving you lots of freedom of movement (I use a hose hanger, which helps, too). There are covers for the silicone tube frame that touches your face and it can't really be tightened to the point of discomfort if it's correctly fit. The part below your nose is soft silicone with a slit the air comes through--it lays against the outside of your nose, not in it. Although it needs to be snug, it isn't uncomfortably tight, and I don't have to fight leaks every time I change position. Every thing about it is very soft. https://www.cpap.com/productSearch.php# ... ear%20mask:

I've been wearing the DreamWear mask and it is by far the most comfortable mask I've ever encountered. It's snug enough not to feel loosey goosey every time you move, but not so tight that it hurts. There's very little surface area touching your face at all, and the strap covers help me be more comfortable (I don't like bare silicone against my skin).

My husband and I bought a memory foam pad for our bed after a stay at a Victorian Inn on a real feather bed ( which is in reality a thick feather=filled pad on the mattress below the bottom sheet). We slept so great! I don't know if the feathers would be an issue with your allergies, but if you can't deal with foam it may be an option.

Sir NoddinOff wrote:Granny. Just a question relating to Fibromyalgia: what is the percentage of males vs females in the general population

"Fibromyalgia is estimated to affect 2–8% of the population. Females are affected about two times more often than males."

Sir NoddinOff wrote:I did note that

gtpjimgammon (jim) posted a reply with some personal info.

I thought it might be the character actor, but a quick google found the actor died a few years ago.

gtpjimgammon wrote:I have chronic pain (fibromyalgia) and was just diagnosed with severe sleep apnea.

I'm curious if RLS or PLMD was observed during your sleep study?

gtpjimgammon wrote: I get a machine soon. I have mixed emotions on it all, but I'm hopeful.

Hopeful is good, but also be determined to make your CPAP process work well. Have you read enough here to know not to accept a "brick" and instead demand a data-capable machine? Do you know how to recognize the difference between brick and data-capable?

So far I only have a phone call from the Dr office, nothing specific except "severe", a word no one likes. I'll advise when I know more. Ok, I understand data capable. Makes sense.

I hope the insurance covers it. I have suffered many years, I WILL make this work. A friend just told me "It will take a few days to get used to it, but it will change your life." Thats great!

Jim

I don't have Fibro, but I will second the recommendation for the Dreamwear. I also do not have any support. My stupid insurance did not cover my machine or mask. I was diagnosed in December and this is my 4th mask. I despised the other ones! I just now got some sleep two nights ago. This is the first one is not uncomfortable or itchy for me. Usually I end up ripping them off around 1am. Two nights now I have kept it on until the alarm goes off. Monumental!!!

I also recommend the Dreamwear. I can barely feel it on my face. Sometimes when I wake up at night I reach up with my hand to check that its still there.

For me, a good recliner has been a big help with my fibro and sleep issues. I can raise my knees and legs, and generally drape myself on the chair so that everything is supported. Also, I think there's a kind of swaddling effect, of being enclosed, like.

I also believe that all these auto-immune things are connected. I wouldn't be surprised to hear one day that chronic insomnia is one of them.

Another option would be the Swift FX with Bella Loops. It just loops around your ears and so the headgear is very very minimal as a result. I already have a TMJ bite guard thingy or I would use the TAP-PAP but the Bella Loops for the Swift FX are nearly as good

gtpjimgammon wrote:So far I only have a phone call from the Dr office, nothing specific except "severe", a word no one likes. I'll advise when I know more. Ok, I understand data capable. Makes sense.

I hope the insurance covers it. I have suffered many years, I WILL make this work. A friend just told me "It will take a few days to get used to it, but it will change your life." Thats great!

Jim

The insurance covers data capable machines. In fact one code covers everything from brick to top of the line. The factor is the profit the DME makes.
Print of the details of the machines you are willing to take and call your insurance to find out who is in network and exactly what they cover. Then phone around and find out who provides what. Treat the whole thing as if you were buying a second hand car from a sleazy dealer and you will be fine. If you have trouble doing that then bring a friend who wear metaphorical army boots to keep them in line.

Please read my blogpost in my signature below: What you need to know BEFORE you meet your DME. The machines listed are out of date. Current acceptable models--ResMed Airsense Elite, Autoset or Autoset for Her, Respironics Dream Station Auto or Pro.

Call your insurance company to confirm that they cover CPAP machines by billing code (HCPC code). All CPAP/APAP machines re the same code. The blogpost will tell you what you are up against with the DME getting the machine you want.

I started suffering from chronic pain in my back and legs about 15 years ago. I have had bad insomnia all my life. Yes, I have observed also that when I get enough quality sleep, I don't have much pain. Conversely, when I sleep poorly, I am much more likely to suffer more pain. I do not believe that Fibro is a real disease, so I never accepted that I had it. How could I have a disease that doesn't exist? Well, it turns out that I had a condition called hyperparathyroidism that was not found by doctors for probably 12 to 15 years. (see parathyroid.com, if you are interested) After that, I felt a lot better, but still not great. Since I have been on CPAP, I feel much, much better and a lot of the remaining symptoms have gone. So it seems most of my troubles were caused by a combination of Sleep Disordered Breathing and Hyperparathyroidism. However, I still have insomnia that never seems to go away.

I think Fibro is a combination of other ailments, some physical and some mental.

I know two people with both fibro and apnea.
Neither one wears their cpap.
BTW: fibro is real, and has been verified for several years.
http://www.webmd.com/fibromyalgia/news/ ... tudy-shows
Just be glad you don't have it, because there are people who would KILL to get rid of it.
Some have taken their own lives.

PEF I know you don't like me, but I have a fair amount of teaching hospital experience of this (not as a patient) and it sounds very much like you have spinal stenosis, symptoms are classic, whatever else you might have. I'd check it out.

PEF wrote:

I think Fibro is a combination of other ailments, some physical and some mental.

I have Fibro (sorry, PEF, it's a real ailment separate from all others, of unknown etiology, usually diagnosed and treated by a rheumatologist), arthritis in many joints from my feet to my cervical spine... AND OSA that was diagnosed 2 years ago. The Fibro doesn't seem to affect my CPAP use, nor does arthritis. The adjustments suggested; mask liner, strap pads, different mask, acclimation by use of wearing mask during the day and others are all good ones to try. It's basically a process of elimination to find what accommodation will be successful for you.

I also have insomnia, which I recently learned is not insomnia at all, but Delayed Sleep Syndrome. This was determined by my sleep specialist. I found some ways to adapt to that, and most nights now, in spite of my best sleeping time being from 3AM to 11AM, I go to bed at midnight and get up around 8AM and as long as I use the machine there is no more tossing and turning and I rarely get up in the middle of the night.

Chicago Granny asked "I'm curious if RLS or PLMD was observed during your sleep study?"

Zero on the restless leg or periodic limb movement.

O2 did drop below 90% at times and REM was only 6.4%. REM related AHI and RDI 60/hr

461 snoring events, 51 obstructive apneas, one central 149 hyponeas 83 respiratoriy effort related arousal events

28% N1, 65% N2, 0% N3

G47.33 severe OSA

Cardiac was fine.