Fibro: when a cardio/pulmonary sleep study isn't the answer

[EdNerd]

So we've been on CPAP not quite 2 years. For me, it's wonderful - for sleep, that is. I put the mask on, the machine starts up the hurricane, and I sleep without snoring and wake without problems (apnea-related ones, that is - the machine don't do miracles!). The other side of the bed, though -- that's a different story. Fibromyalgia, a rainbow of meds including prescriptions and supplements for sleep, and a CPAP. But her sleep problems are not cardio/pulmonary. But all our sleep doctors and their sleep studies ARE!

She has a "mild" apnea, and using the CPAP was a "lifestyle decision", the doctor says. Still no sleep? Here's some meds. Very frustrating!! But we're in a small rural area, and it's 3 hours to the nearest population center with a range of doctor choices. So this is who we have locally.

Still, I have no problem at all driving out of town and staying a night or three, if that would get me to the right doctor to evaluate her issues. I'd sell my house to get her some consistent decent sleep!! But it's such a mix of pain, neuro-muscular issues, and a few other issues (with possibly a touch of apnea thrown in for good measure), it gets confusing. And you get caught in the net of the doctor's specialty, and they rarely look beyond what they were trained in and deal with comfortably. There's got to be a doctor out there who looks at every piece of the puzzle before describing the picture - isn't there??

But what kind of doctor do I look for? Who evaluates *this* kind of sleep problem?
Can anyone give me drop-kick in the right direction, please?

Ed

[Julie]

Hi - just wondering if you could more clearly say what problems your wife has... are they mask related, wake-up at night related, high AHIs, etc. etc. And I wonder if you could be more specific about her meds as many can interfere with sleep and/or Cpap depending on various factors.. and it's often possible to switch to other ones, or change the dosage, or time they're taken, etc. Without more to go on, it's hard to help. Did she have an actual sleep study?

[Bookit]

I'm just speaking from my experience. I'm no expert in fibromyalgia but it runs in my family and I have had my own battles with it.

My solution ended up being a travel diseases doctor who did not take insurance. Mostly because insurance companies won't pay for any treatment that seems "experimental “.

My fibro symptoms were triggered by a beat down immune system. A long series of antibiotics and Valtrex eventually delivered me from those symptoms. It took years. But every case of fibromialgia is different. Don't know if such a treatment would help your wife or not.

[kteague]

Does she have any issues of limb movements while asleep, like jumpy legs?

[EdNerd]

Yes, she had a regular sleep study.
No, she doesn't have any limb movement or other similar issues.
The mask could be an intermittent problem. She uses a DreamWear with pillows, and it will slip off her face and noisily spew air. Wakes *me* up!! But usually not her.

She does sleep. She just can't get good restful sleep. I don't want to get into all the meds. None are "sleep opposers"; three were given specifically to assist her sleep.

And that's part of the problem: a sleep doctor who is qualified to -- or will work with one who is -- to sort through the meds and re-evaluate them. Some of these prescriptions originated 8 - 10 years ago. And our 15-minute docs simply say "Looks good" and keep it all running.

Does a decent real sleep doctor exist?? I mean one who looks at the whole sleep package - not just breathing.

[TropicalDiver]

In her shoes, I would first be working on the fibro -- most likely with a doc who has a rheumatology background. Fibro and sleep disorders are often related.

In her shoes, I might then look for a sleep doc with a neuro background (rather than pulmonology). Yes, they are around.

Sorry, I know travel can be hard for most fibro patients.

[zoocrewphoto]

Have you posted any sleepyhead graphs from a typical night for her? Perhaps her settings have not been ideal. Many sleep doctors think under 5 is okay and don't look at any of the details. My mom had a situation where she didn't feel better and the sleep doctor told her she was fine. I let her use my machine at her settings since my machine had full data. We found clusters of long events. She ended up going to my sleep doctor with reports from my machine and got a new machine with better settings. She is doing much better.

I would start with that. She may get some improved sleep without going to a new doctor.

You might also want to give your general location. Somebody might recommend a good doctor that they are familiar with.

[Julie]

Would you prefer not to say what meds she does take? People here are knowledgable when it comes to what works with OSA/Cpap and what can be problematic, and while we might comment, we can't/won't tell you or her what to do, but can at least advise, give you something to be specific about when you e.g. see even her primary doctor (who should in fact be coordinating all).

And you still haven't really been specific about what her sleep issues are with Cpap... we really would like to help, but some particulars would be a good place to start.

[Janknitz]

My personal observation is that conventional MDs don’t know how to do anything more than to throw pharmaceuticals at fibro, with very poor results, tons of negative side effects. Sounds like your wife has already been there, done that.

There are MDs and DO’s who practice functional and/or integrative medicine and that’s who you want to look for. They don’t treat symptoms, they look for underlying causes and treat those. Most often issues like fibro begin in the gut, and these doctors know how to test, diagnose, and treat the underlying issues (pain just doesn’t happen, there’s a reason for it), getting real improvement, not dependent on a pill every 6 hours to treat pain without addressing the cause. It may sound like woo, but I’ve known people who have had enormous improvement with functional medicine.

Get online to fibro sites and find a good functional or integrative doctor in driving distance (not all are equal, so recommendations are helpful). Look for doctors who have been helpful in reversing symptoms. Some are very kind and sympathetic, but don’t really get anywhere in improving the underlying conditions.

I hope you find some help for her.

[Anj212]

just wanted to add that I was originally told I have fibro and had tons of pills thrown at me with horrible side effects. After 2 years of the run around, I found a good DO with an integrative care background. I was diagnosed withe Lyme Disease, hypothyroidism and sleep apnea. Have been treating those issues and starting to feeling better. I would also suggest a sleep doctor who is a neurologist - I just started seeing one in NY and could give you the name if needed.

also - it took some hunting but I was able to find doctors that accept my health insurance. not at all easy but worth looking into.