What the heck?

[Rubyslipper]

I haven't been on the board for quite awhile. Not because my EKD/RLS went away or even was under control but just because of life in general. Many new things in my life both good and bad. Anyway it is good to be back. Like most people, it's good to know others understand what you are going through.

I have been on Mirapex for years and it continues to work pretty well for me. I now take 1/2 pill in the afternoon and one at night. I still have at least 1/2 my nights disturbed but only by RLS 1-2 nights each week. I have fibromyalgia and that doesn't help. I also have hypopnia (low blood oxygen when I sleep--not really apnea) and use a CPAP. I've had it for 3 years and still hate it. My mask leaks (I have tried lots of different ones) so I toss and turn, try to fix it....

Bottom line, my days are miserable. I am so tired all the time that it really is hard to keep going. I am going to ask for another sleep study when I see my sleep doc in two weeks. Why am I telling you all this? I don't know, just seemed like the place to do it. I was wondering just how many others have problems other than EKD/RLS that brings them down.

It's just a low time for me right now and I wanted to know how others cope, ideas for help, whatever. Sorry to be gone so long and then spend such a long post complaining! Oh that's right...that's what the board does best, listen to others and lend suppost.

[ViewsAskew]

Ruby, I saw this really cool mask at the sleep study place a few weeks ago. It was fabric and small and looked absolutely usable.

Here's a link....of course, it still might leak, but at least it looks comfortable.

[Rubyslipper]

See, THIS is what I'm talking about. You just never know when someone will have a neat idea. Thanks! I'll check it out.

[ViewsAskew]

It was funny...my best friend has been going through a lot (she has lupus, may have cancer and is having surgery, her BP has been through the roof so they won't do the surgery, and they thing she might have apnea). She told me that her sleep doctor said she'd be hard to fit because she has a small face and nose. They were considering a child's mask.

So, I'm meeting the new sleep doc for the first time and I'm waiting for her in her office. Across from me are all these masks and I see this fabric one.

You just never know when you'll learn something that may help someone else.

I hope you find a mask you like and more importantly that works!

[badnights]

It's very common for ED patients (I'm using the new name already!) to suffer from multiple disorders. I am *so* *so* lucky that I don't. Well, come to think of it, I have sciatica and asthma, which started at about the same time my ED first went nuts; but they're relatively trivial, easily treatable things compared to fibromyalgia and sleep-related breathing disorders.

But so many of the people on this forum, and the people who write to Dr B, have multiple disorders. There must be dozens of people reading your post, nodding or letting a tear loose in sympathy.

I used a CPAP machine for a few months (a long and stupid story - I didn't even need it, but someone made some money) and the leaking mask was a nightly grief. If you can even get that one small thing fixed, it will go far to improving your general well-being. Fingers crossed.

[sleepdancer]

RubySlippers,
I can relate to having sleep disordered breathing and RLS. I also have PLMD. What I've found most frustrating is the difficulty discerning which is the culprit when sleep is poor. We can think the med is not working, or the CPAP treatment is not working, but it's hard to know which needs tweaking. In over 10 years of dealing with this, I've come to feel that for me, getting the breathing while sleeping right is more measurable, so when that's the best it can be, I can then focus on the limb movements as the likely culprit for most residual symptoms. Only when my CPAP is doing its job can my sleep be decent enough for the limb movements to fully manifest and know what I'm working with. On the flip side of that, only when the limb movements are therapeutically treated can we get a full picture of the severity of our sleep disordered breathing. Frustrating! But when two issues are both only partially effectively treated, in my mind that's the worst place to be, because nothing is as it seems. Best wishes on finding a mask that suits you and doesn't interfere with your sleep.

[Rubyslipper]

Thanks, everyone. I have an appointment with the sleep doctor next week so we will see what he has to say. In the meantime I am going to try a couple of different masks. I think its important too, sleepdancer, to just work on one item at a time. If I can get this under control then I will start again on the EKD/RLS.

I am going to SLEEP 2011 in Minneapolis in June. The vendors there really only are there for professionals (doctors) but some of them will discuss their products with patients. I would like them to consider more of the patient suggestions, letting there be more trial use. Who knows? Maybe something will come of that!