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Living without tonsils. CFS - CPAP

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1ANN +0 points · over 5 years ago Original Poster

Hey, I feel the need to explain the complex story of the parts of my life but I won't get too much in to details. Ever since I was a child I have been feeling energetic but more than that, I was extremely hyperactive. As you may guess I had AHDH and it was too much (thats what people say/said) I was cute little kid but no one liked me because I disturbed them so much (some told me later). When I was 14/15 years old because of the sleep apnea I had (not diagnosed but had too much loud snoring and too much stopped breathing through the night) and because my family had fear of my sleeping issues they took me to doc. And long story short, my tonsils were taken! Then I didn't snore much But I realized that I have cfs years later. I was always tired no matter what I eat. Hyperactivity said good bye to me and never came back however though between age of 15-20 I was rarely energetic bu thats when I was having magnificent day (once a month or every two months but just one day and I guess it was a serotonin/dopamine boost). I actually realized cfs when I was 26 when my friends used to tell "Hey, you look tired"! Yess, till that day I was suppressing myself, I was truly tricking myself. I thought everyone is lazy a bit and everyone is forgetful somehow, concentration deficit is a problem of most people. But now I don't think that way, neither I deny it totally. I believe that we are the people, creative creatures thats what distinguish us from the animals. But when you can't function well, when you throw yourself from sofa to sofa, from chair to chair because you are tired all the time, you can't stand long and you can't think clear, you can't even cominicate well because you have brain damn fog as hell.. Spendin $K's on modern medicine and not getting any benefit and spending times on reaserches and doing leaky damn gut diets 'haha' no improve. Neither alternative medicine has helped though. I don't want to see any Dr.s face anymore (even now I see couple Dr.s though), they have been helpless for me and thats why it's very perspective. And I believe any Dr. must have at least sense of mercy. Whatever, I am coming to the point; first of all I'm not fat at all I'm 165 pounds (75kg) and 6ft2 (186cm) now 28 years old. Blood test were ok all time except mild low testosterone but still in optimal range, which I wouldn't prefer anyway. I did a eeg test and sleep study in 2016 in NYC and I had very mild sleep apnea and doc. said mild apnea wouldn't affect your energy levels and asked to see me in hospital to sleep as well but insurence didn't provide that and I didn't think that it would change the result and I turned the rotation of my research to other point. Days passed doing researches and I always had a CPAP on my mind why? Because I had sleep apnea for sure, tonsils taken but more than that I feel like I don't have enough oxygen in my brain and have always dry nose and feeling brain dehydrated. However drinking too much water but cells wouldn't hold it for some reason water goes to the bladder without an absorbtion (alternative medicine detected that and have frequent Urination. I said CPAP was on my mind but I always tried alternatives because I didn't want to rely on a robot machine and didn't want to use it without 'DR'. I have a close friend who was sleepy most the time and who understands me now (most people don't get it) but he had bad sleep apnea and he is energetic now and He is regret that he didn't use it earlier and he is the one who will guide me. Folks, I have no any other option I tried everything and going to try it too and see what happens. I tried Oxygen Hyperbaric therapy twice and I was happy with that but couldn't go later for complex schedule. There should be something to do with air i believe. Maybe it will be beneficial and if it will, I won't sit on chair ever again. By the way has anyone had similar story? Would you mind sharing? I would share my experiences if i get any comment. So I know some one is reading. Someone is understanding...

I won't mind if I die, I'm not living anyways. Thankfully I have faith in God, I know where I am going. Thanks for reading. May God help those who need help. The one who experiences, that knows.


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snuzyQ +0 points · over 5 years ago Sleep Commentator

Hi 1Ann,

I'm so sorry for your fatigue. As one who had CFS (chronic fatigue syndrome) for 8 years, I truly sympathize with you.

Since you had a sleep test that showed you have very mild sleep apnea and your doctor has said that this should not be affecting your energy levels, then it would probably be best to take that at face value and quit the worry about needing CPAP. It sounds like you really don't need it. This forum is probably not the best place for you to find the help you need.

Have you sought out the company of others with CFS? I recovered from mine...mostly by realizing that I was exhausting myself by trying so hard to get well. Being sick for so long made me very depressed - to the point that I also wouldn't have minded if I had died. I really needed some professional help (as well as my faith in God) to get better. Meds helped. Finding out I had a sensitivity to gluten helped (I went gluten-free for 3 years). And then I finally accepted that I might not ever get well and started just learning how to live the best I could with whatever measure of energy I had for each day, one day at a time. And I started being thankful in my situation...not thankful for CFS, but thankful just to be and thankful for whatever measure I was given for that day. When the energy was spent, I went and laid down and was thankful because I could. I counted breaths and was thankful I could breathe. I just quit fighting. It takes such precious energy to fight. CFS happens to folks - a wide variety of folks. We didn't do anything to deserve it...it just happened.

See if you can find your CFS community. Tell your doctor about your depression. There's a lot of support for you out there.

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