Ruby

It just takes time and experimentation to see what works best. Is 5-6 hours of sleep working for you? You might also try putting a round pillow under your knees. That helps keep some of the stress off your lower back when sleeping.

I'm not sure there is such a thing! I also use a full face mask and have the same problems as you. Is the mask you are wearing the only one you have tried? I had a mask that worked pretty well but left cheek marks and forehead marks. So I went into my local supplier to try something different. I found one that is much lighter and leaks less (maybe because it weighs less?) It still leaks some when I am on my side but not as much. Look on line for CPAP accessories. Several years ago I found soft pads that fit around the mask holder that is against my cheeks. They fasten with velcro and help a lot with cheek marks.

Maybe this is covered in another thread but I didn't see it. I was wondering what different things people try or use to help them relax before they go to sleep. I saw one person used meditation and would like to know more about that. What helps you go to sleep? What keeps you awake? Do you fall asleep in front of the TV? Do you sleep with a light on? Does it have to be completely dark? Do you take naps?

Just thinking of ways we can help each other!

Just as a question--how many of the people on this forum were diagnosed by a doctor before you were aware of a problem? It seems that most of us either went to the doctor because we suspected a problem or the problem was found during treatment for something else. If this is the case, then we need to do some serious thinking about the diagnosis side of sleep apnea. While I realize there are no tests (other than a sleep study) and no medications, there has got to be a way to catch this earlier before damage is done.

I also see where people have different suggestions to help with sleep, like meditation. Maybe that's a good thread idea for the forum.

A friend of mine long ago had the same problem. He was told to lie in bed with the lights on and the mask on. Then move his hands all around to show that he wasn't tied down, he was free to move. Do that with his legs and eyes. This was all to prove that he wasn't in a tight spot or being held down without being able to move. It worked for him but it did take a few nights.

I have had RLS for most of my life. It was years before I knew what the problem was and quite a while before I found anything that works. I will pass on a few suggestions/ideas for consideration but one thing to remember has already been posted--everyone is different. What works for one may not work for another. It can become very frustrating!

The first thing I would suggest is to learn everything you can about RLS. The best place for that is the RLS Foundation website. I was on the board of directors for several years and it is the most reputable, reliable site there is. The discussion forum there is also great. Education is key--many doctors don't know that much about RLS and there are many more who don't believe it is a viable disease. So go armed!

Second, there are no tests available to prove or disprove that you have RLS. The only thing that comes close is a sleep study. It will show how many times you are awakened and/or how long it takes to get to sleep but there are still doctors who will not use that as evidence that RLS is the problem. My best suggestion is to keep a sleep diary--what you did during the day, what you ate, stress levels, exercise, etc and then how you slept that night. How long it took to fall asleep, how often you woke up, how long you were awake, etc. Sometimes you can track what things make your RLS worse. Plus this helps when you visit your doctor. Proof that you are not sleeping well instead of a vague, "I just don't sleep."

If anyone is interested, I can post more suggestions that might help. The last one for this post is for Friendly--unless you have a strong urge to move your legs along with your feelings of tingling, you probably do not have RLS. That feeling that you have to move your legs (of other body parts) when you are at rest is the key criteria for RLS. That isn't to say that you might not be having early signs but chances are your tingly feelings are due to something else.

Those are great suggestions for inclusion in the survey. What is the reasoning behind the two hypothetical questions? Questions like these can be problems as people tend to over-look the "hypothetical" and only remember that they might be charged for not using their CPAP or that they might get money for using it. I don't see where either scenario might happen and think that the questions might cause a lot of confusion.

Thanks for all the information! I'm so glad I asked!

Is there a way to find out what research is being done in this area? I know that would cover lots of ground at many, many different hospitals and clinics. A great frustration for me is wondering if anyone is actually doing research that affects me and the final outcome of that research. How do researchers decide what to research? Where does the information go from the research? Just the same for clinical trials. What were the outcomes and how was that specific trial decided on?

So often, what little information I can find, it seems the research/trials are far off base from what we need. That is why I am so excited that this site is patient-driven. We can use this venue to get the word out about what we think is important--just as it says in your post.

I haven't but heard testimony from two men who had and with great success. I would do a lot of research and thinking before doing this. From what I remember, it's pretty permanent, can cause problems if you have an MRI of the head and if you have one, you can never have a pacemaker. That may have changed but it is something to research.