Thanks in advance. I will tell you off the bat this will be a long post, long overdue and necessary for me.
I'm 28 years old, just moved back home with mom, and nearly incapacitated due to what I believe is CFS. (not professionally diagnosed, yet) This isn't new, for I have suffered from symptoms for years, but managed to live my life based on a few factors (mainly because my previous employers have always taken easy on me and kept me around) but also my career path has allowed me a little more freedom.
Anyways, my sleep schedule has always been in disarray, messed up circadian rhythm etc. Goto bed around 3am sleep until easily 3pm (12 hours) I've suffered with being unable to maintain a 'normal' schedule and this has caused problems (unreliability) in my life. But I have always known it's been more than just bad habits. If I wake up early, even after getting 8 hours of sleep, I'll literally have no energy throughout the day and like clockwork by 3pm i'm in the process of a 'crash' body and mind both shutdown. And by 5-7pm I pass out. (creating a nasty habit obviously of a bad sleep cycle) I noticed if I sleep in, and wake up around 3pm and then goto sleep around 3am I don't experience this. This has been going on now for easily 5+ years.
Recently a bunch of things began to occur in my life which has led me finally to now seek out doctors for both the actual problem and treatment because I have always known something was wrong, and now here is my opportunity (no work, no responsibility etc etc) Obviously, first stop was the sleep clinic. I went back in January, and had an overnight study done. They told me I have Upper Airway Resistance Syndrome or UARS which basically airway resistance to my breathing during sleep. The primary symptoms include daytime sleepiness and excessive fatigue. Perfect I thought, this is the problem! I get CPAP, I can't use it. Next option was an oral device that pushes my jaw forward to allow better air flow. Good news, it worked, kind of. Took my body's need for 12+ hours of natural sleep (no alarm clock just sleep and wake up cycle) to 9 hours, like clock work. Ok cool, progress. But I still have the same excessive fatigue during my days, whether I do something or not. Obviously days when I work or have to do something I am affected worse. The slightest task is tiresome (for example I was just folding laundry and it took everything out of me)
So this took a course of months to actually get done, I finally got prescribed from the sleep center for provigil which was my 'last resort'. I started taking this stuff last week. Have kept a log, it created some hope in me, but I still experienced these fatigue spells mid-day, and although I didn't fall asleep I was able to push through them, unfortunately yesterday I had a spell and passed out at 7pm and woke up at 10am this morning. Anyways, from January until now I have been seeing my Endocrinologist and blood work showed actually I had low Vitamin D. Great, another 'reason' why the fatigue. Began taking 50,000IU weekly, but again no solution, even with the oral device etc. etc.
Thyroid came back fine, as well as other 'causes' (I guess whatever they would normally check for. She also told me I have High testosterone. (explains alot haha) I went to goto my GP today and she wasn't in. I was going to complain to her and hand her a list of stuff I want tested for (EBV LYMES) and some others I jotted down through all my research on the internet.
I'm drained. My life sucks. My mom and dad and friends think i'm lazy. My father keeps saying goto a counselor, which I've done in the past but he is adamant that that is the problem. It gets me so angry. When I'm functioning i'm fine and feel ok, but when I'm not, yea sure i'm unhappy and 'depressed' who wouldn't be? My mom trys to be understanding but she's not and anytime I try and discuss what I'm thinking or found in regards to this she shrugs it all off. My friends don't understand they think i'm lazy or sleepy etc etc. I really don't know what to do. Out of spite I actually went to a counselor yesterday to tell my dad 'told you so' But I am certain it is not depression causing this, if there is depression, it is a BI PRODUCT of whatever medically is wrong.
I have an appointment for a Neurologist Monday, just because, and a Rheumatologist Next month unfortunately it's so long because I guess they are busy. I just want to cry, really, I don't know who to talk to. I am running out of money I literally have 3k left, I have a car lease I got into last year when I was making money. I am a type 1 diabetic (yes my blood work and blood sugars are fine in regards to all this)
Last I want to mention is other than dragging the most of the day (which doesn't necessarily happen if I take provigil now) When these fatigue episodes occur mid-day they go like this:
I always begin to get a heavy feeling in my chest or behind my heart, i like to say my 'core' it's weird, but its like a spell that comes over me and begins to drain my physical body. I begin to get real pale and real baggy black circles under my eyes, I begin to look sick, or like a crackhead. I can't think or speak for that matter, like I really can't speak. I can hear, and listen, but can't respond. Text's work to chat but not vocally. And eventually I have to lay down, and I pass out. Some times (not always) I get these crazy body shakes, and cold. But it doesnt always happen.
Everything I do though is draining. I do any activity for an hour or so I have to sit. I can never really stand without it taking a ton of energy to do so. I was going to the gym until that just made me feel worse so I stopped. I have been on the couch up and down all day today. It's beautfiul out and I'm here. This is my life
Ugh. I question everything sometimes. Is this all in my head. Am I a hypochondriac. Are my parents right? I am full of fear, my mom is getting sick of watching me lay around all day. I have fear I will run out of money, then what? Where do I live? How do I generate income? I'm dying mentally physically financially spiritually and emotionally. I just need to vent.
Maybe somebody can say or direct or guide me in the right direction. All these doctors I don't even really know who to goto or what to look for. I feel the doctors are incompetent or don't understand. My highest hope is with this rheumatologist, and thats 4 weeks away. WTF am I supposed to do until then. Ugh.
Thanks in advance, sorry for the rant. -Jon
I'm 28 years old, just moved back home with mom, and nearly incapacitated due to what I believe is CFS. (not professionally diagnosed, yet) This isn't new, for I have suffered from symptoms for years, but managed to live my life based on a few factors (mainly because my previous employers have always taken easy on me and kept me around) but also my career path has allowed me a little more freedom.
Anyways, my sleep schedule has always been in disarray, messed up circadian rhythm etc. Goto bed around 3am sleep until easily 3pm (12 hours) I've suffered with being unable to maintain a 'normal' schedule and this has caused problems (unreliability) in my life. But I have always known it's been more than just bad habits. If I wake up early, even after getting 8 hours of sleep, I'll literally have no energy throughout the day and like clockwork by 3pm i'm in the process of a 'crash' body and mind both shutdown. And by 5-7pm I pass out. (creating a nasty habit obviously of a bad sleep cycle) I noticed if I sleep in, and wake up around 3pm and then goto sleep around 3am I don't experience this. This has been going on now for easily 5+ years.
Recently a bunch of things began to occur in my life which has led me finally to now seek out doctors for both the actual problem and treatment because I have always known something was wrong, and now here is my opportunity (no work, no responsibility etc etc) Obviously, first stop was the sleep clinic. I went back in January, and had an overnight study done. They told me I have Upper Airway Resistance Syndrome or UARS which basically airway resistance to my breathing during sleep. The primary symptoms include daytime sleepiness and excessive fatigue. Perfect I thought, this is the problem! I get CPAP, I can't use it. Next option was an oral device that pushes my jaw forward to allow better air flow. Good news, it worked, kind of. Took my body's need for 12+ hours of natural sleep (no alarm clock just sleep and wake up cycle) to 9 hours, like clock work. Ok cool, progress. But I still have the same excessive fatigue during my days, whether I do something or not. Obviously days when I work or have to do something I am affected worse. The slightest task is tiresome (for example I was just folding laundry and it took everything out of me)
So this took a course of months to actually get done, I finally got prescribed from the sleep center for provigil which was my 'last resort'. I started taking this stuff last week. Have kept a log, it created some hope in me, but I still experienced these fatigue spells mid-day, and although I didn't fall asleep I was able to push through them, unfortunately yesterday I had a spell and passed out at 7pm and woke up at 10am this morning. Anyways, from January until now I have been seeing my Endocrinologist and blood work showed actually I had low Vitamin D. Great, another 'reason' why the fatigue. Began taking 50,000IU weekly, but again no solution, even with the oral device etc. etc.
Thyroid came back fine, as well as other 'causes' (I guess whatever they would normally check for. She also told me I have High testosterone. (explains alot haha) I went to goto my GP today and she wasn't in. I was going to complain to her and hand her a list of stuff I want tested for (EBV LYMES) and some others I jotted down through all my research on the internet.
I'm drained. My life sucks. My mom and dad and friends think i'm lazy. My father keeps saying goto a counselor, which I've done in the past but he is adamant that that is the problem. It gets me so angry. When I'm functioning i'm fine and feel ok, but when I'm not, yea sure i'm unhappy and 'depressed' who wouldn't be? My mom trys to be understanding but she's not and anytime I try and discuss what I'm thinking or found in regards to this she shrugs it all off. My friends don't understand they think i'm lazy or sleepy etc etc. I really don't know what to do. Out of spite I actually went to a counselor yesterday to tell my dad 'told you so' But I am certain it is not depression causing this, if there is depression, it is a BI PRODUCT of whatever medically is wrong.
I have an appointment for a Neurologist Monday, just because, and a Rheumatologist Next month unfortunately it's so long because I guess they are busy. I just want to cry, really, I don't know who to talk to. I am running out of money I literally have 3k left, I have a car lease I got into last year when I was making money. I am a type 1 diabetic (yes my blood work and blood sugars are fine in regards to all this)
Last I want to mention is other than dragging the most of the day (which doesn't necessarily happen if I take provigil now) When these fatigue episodes occur mid-day they go like this:
I always begin to get a heavy feeling in my chest or behind my heart, i like to say my 'core' it's weird, but its like a spell that comes over me and begins to drain my physical body. I begin to get real pale and real baggy black circles under my eyes, I begin to look sick, or like a crackhead. I can't think or speak for that matter, like I really can't speak. I can hear, and listen, but can't respond. Text's work to chat but not vocally. And eventually I have to lay down, and I pass out. Some times (not always) I get these crazy body shakes, and cold. But it doesnt always happen.
Everything I do though is draining. I do any activity for an hour or so I have to sit. I can never really stand without it taking a ton of energy to do so. I was going to the gym until that just made me feel worse so I stopped. I have been on the couch up and down all day today. It's beautfiul out and I'm here. This is my life
Ugh. I question everything sometimes. Is this all in my head. Am I a hypochondriac. Are my parents right? I am full of fear, my mom is getting sick of watching me lay around all day. I have fear I will run out of money, then what? Where do I live? How do I generate income? I'm dying mentally physically financially spiritually and emotionally. I just need to vent.
Maybe somebody can say or direct or guide me in the right direction. All these doctors I don't even really know who to goto or what to look for. I feel the doctors are incompetent or don't understand. My highest hope is with this rheumatologist, and thats 4 weeks away. WTF am I supposed to do until then. Ugh.
Thanks in advance, sorry for the rant. -Jon