My doctor refuses to do any research either. I live in a rural area and my choice of doctors is a bit limited. It's very frustrating to have a condition and to feel that you know more about it than your doctor does. I wouldn't mind being the better informed party in the relationship, but he's the only one who can order tests or meds. So, I would prefer that he cared enough to do some research. I'm sorry to hear that this is happening to you, hollie9. I bet we're not alone.

My mom has sleep apnea and it does cause fatigue, but so does CFS. Imagine that! Now if you can just convince your doctor.

I agree with you that sleep apnea does not cause CFS, but CFS does have a lot of different triggers and aggravators. For me I have CFS and sleep apnea. I decided to get tested for SA before I was diagnosed with CFS. I quit breathing about 20 times an hour which they consider a moderate amount. I have been on a machine for a little over a year and I can tell a huge difference in my day and symptoms if I use the machine or not. It may not be your cause or your cure, but it just might give you more clarity in your mind and energy level - it did for me.

I have both as well, and have very faithfully used my cpap machine, even for naps, for about 3 yrs now.
I can tell you for absolute certain it has made no difference at all in my CFIDS symptoms. I do sleep better, as I don't wake up choking for air and I don't wake with a headache. Also, when I have a cold type virus I can be pretty sure I will not get bronchitis or pneumonia if I am using my machine. I think it helps keep lungs clear because for 20 yrs if I had a cold I inevitably got pneumonia or bronchitis and I haven't had either since starting with cpap.
So it has it's uses but it's no cure for CFIDS.
I had to start using the machine and not get any relief to convince my doc it wasn't what was causing it, and you may need to do the same.

Nina and Tammy, before you started using the machines was your tiredness like normal tiredness where you can sleep during the day instead of being wired but tired?

In researching sleep apnea, the most common problem is that people don't use their CPAP machines and I'm sure I'd be one of them. Also I know a man whose machine got bacteria in it and he nearly died of a bacterial infection from the machine.

So since I don't want to even use the machine, what is the point? I guess there are surgeries that can be done?

My tiredness didn't change. I could always nap during the day with work and lately, the past year or so, I essentially MUST nap during the day to be up for dinner.
I have a 98% record for using my device. In fact if anything I use it maybe too much, about 10 hrs a day. If you don't feel you can use it, then it's not worth trying I suppose but I was really resistant and found a doc who gave me an autoset model, where the machine figures out how much pressure I need and adjusts it for me on the fly. I use a nasal mask, tried all three kinds and it's the only one that works for me.
As far as surgery, you can talk to an ear,nose, throat doc- they can tell you if you even need it and if you do, why. It could be anything from needing what I call a nasal rotor rooter, to your throat collapsing, to gerd...it's hard to say if surgery can help. I have been snoring since I was in my crib, so my problem can't be fixed with surgery because my throat collapses and I have a deviated septum. They could fix the septum but not my throat, so I need to use cpap forever.
Sorry there's no exact answer for you.
But as I said, to be honest it didn't help my CFIDS at all, just other things.

My tiredness before the CPAP was different then it is now. Before the CPAP I would be sleepy and tired most days. Now I am tired or exhausted, but rarely sleepy.

Its hard to say when my CFS started rearing its ugly head because I believe it started before I even realized something was seriously wrong. I just kept thinking I was low in vitamin D or not getting enough sleep, working too hard, etc.

I had a hysterectomy in April 2013, right after I got the CPAP (March) and never really recovered. I got really bad in October 2013 (bed ridden) and diagnosed with CFS April 2014. So it is hard to say when it all started.

I do know that I have needed a CPAP for many years and avoided it. The reason I know is that I slept over at the hospital when my daughter was tested and she was quiet, but they said I was struggling to breathe and they said I should get tested right away.
I procrastinated for years and have always been tired. I could usually nap for about 30 minutes and feel better. Now if I dont use my CPAP machine I feel awful. I am sleepy, tired and will have fatigue. It is a guarantee that I will feel worse without the CPAP then with it.

I dont know that it is the CFS symptoms that are worse or just I feel worse for lack of deep sleep. I am still sleepy at times and still have all my CFS symptoms, but rarely feel like taking a nap.

I dont remember having the wired feeling before the CFS. I feel like for me it is related to stress and CFS, but still working that puzzle out.

As to your comment about the bacteria, yes, if you dont clean your machine and use the proper water like you are supposed to, I imagine you could have some serious problems, but it is simple to clean and the water is distilled.

Some people have trouble with the machine. I love the one Nina is referring to (auto-set model) it is really comfortable. I use the nose pillows, but there are several different types of masks that you can try during the test. It took me several months to adjust, but now I sleep so much better with it than without it and feel soooo much better that I dont want to be without it.

You can see an EMT Doc like Nina suggested and they may be able to tell you if surgery is an option for you. It was for my daughter and she was cured from sleep apnea. I have been told that I probably could be helped, but I dont want to risk having anesthesia and getting worse in my CFS.

Sorry for the long reply

Thanks for your replies. I don't know if I'll have the sleep test or not. I don't notice waking up for any choking or anything. And I cannot nap. The only time I can nap is if I'm really sleep deprived which I assume I would be if I had sleep apnea.

My fatigue is always rather wired. Wheels in my head keep spinning loudly and I'm never sleepy.

Anyway, we'll see......

Can you change doctor? I just have. He doesn't sound great. He doesn't even understand the condition.

Doesn't sound like you have apnea from your description.
Does sound like the all too often adrenal issues we have where you are wired and tired and then just tired once they burn out.

I haven't found a primary type doctor that cares to know anything about CFS for a decade. In the 90s there were quite a few docs that were knowledgeable about CFS but I think they all retired, as did my former specialist doctor.

These younger doctors, I haven't found one that knows anything about CFS and most say they don't want to learn about it. I have gone to quite a few of them looking for a primary and they all say the same thing.

I could go to a specialist like one 50 miles from me who used to work with Montoya. But he is mainly doing antiviral treatments and I've heard about lots of side effects and not working, plus the drive would be hard.

So I feel like I'm on my own until Ampligen gets FDA approved.

I had no idea I had sleep apnea & I don't fit the "normal profile" of someone who would usually be diagnosed with having it, but my doctor suggested testing for a sleep disorder when I was searching for what was wrong with me. I had sleep studies done about two months before my official CFS diagnosis came (which was about 5.5 years ago). I don't think the two are necessarily related, but if you do end up having any sort of sleep disorder--then treating it will of course help your overall health.

I consented to a sleep study because I wasn't sleeping well (hard time falling asleep, jerking legs, etc). During my first sleep study they found out I wasn't reaching stage 4 sleep! I also had moderate apnea, enough to get a cpap machine for treating it. I also tried some restless leg med samples, but that had adverse affect on my health so I stopped taking it. Instead I found eating a small snack before bed helps with the restless legs and I use ambien to help me get to sleep & I use my cpap machine everyday too. Knowing myself and finding what works & doesn't work helps. Every little bit helps. With each of these, I feel better in overall health using them than without them. Each is "a tool in my toolchest" that helps me function & feel better.

It doesn't cure the CFS, but I am faithful to use them because when I use them, it makes life with chronic illness more bearable. When I have a cold & don't use the cpap or the electricity turns off during a storm & I sleep w/o my cpap, I can tell the difference the next day in how I feel, think & function. That said, it took me a month or more to get adjusted & used to sleeping with the cpap. It is frustrating at the beginning, but then after a while, my body just craves the better sleep I get from using the cpap.

As far as getting sick from the cpap, I've not heard of that, but I suppose it might happen. Just be faithful about cleaning the mask, hose & water chamber frequently with dish soap & then disinfecting them with vinegar & water. Always use distilled water when filling the water chamber & you shouldn't have much of a problem. Also, remember that all these items are replaceable & will wear out so replace them as needed with new ones.

So anyhow, whether or not you get a sleep study done & whether or not you have sleep apnea, I do hope you feel better soon!

Candi, after reading all the work involved with a CPAP machine, cleaning it constantly and disinfecting all the parts daily, lugging home distilled water, I just don't have enough energy for those things daily.

I haven't filed a tax return for 2013 yet and have to give my dog baths for a newly discovered skin treatment, plus all the normal stuff like shopping for food.

And I don't think I would fall asleep during a sleep study, even with my meds. I would be hyper just knowing I was supposed to fall asleep. I can't sleep when I have company here at home. How did you guys even fall asleep in your sleep studies?

They may say to clean it daily, but I only wipe down (with a baby wipe) my mask everyday. I rinse out the humidifier chamber daily, but I don't deep clean & disinfect it but maybe once a month. It doesn't take much time really. I confess that I deep clean everything maybe every two months? More often if I am getting over a cold or what not, but it seems to be put off if I don't have energy either. Its a bit of a struggle, but I somehow manage to keep everything in good shape and taken care of. I should probably add that my cpap mask type is a nasal mask, not those nasal cushions you stick in your nose or one that is nose & mouth. So mine stays cleaner than maybe otherwise with another type of mask.

As for distilled water, I never fill my chamber up even halfway each day, more like maybe 1 cup or 2, and my preferred humidifier setting is low, so it doesn't even use up all of the water. A gallon of distilled water should last a couple of weeks! We have a water softener & reverse osmosis in our house, so I just use that (& take a jug of that water or bottled water when traveling.) Its as good as distilled in my book!

As for sleeping in the sleep study, I just took some melatonin and an ambien like normal. They want you to do whatever you normally do, so if you normally don't sleep, then that's what happens! If you sleep for only an hour or three or eight, then that's what happens too! It will be documented & the doctors can analyze it & figure out how to help you with that.

Def not trying to nudge you into a sleep study but did want to mention that many docs now have units you can just take home and wear for the night. If it comes back as apnea then they might ask if you'll do an overnight to find time the machine, but the at home can give them darn good info.
As far as sleeping there, I admit it's hard, but they figure that in....