Thank you for taking your time for reading this post. I had to make an account here because i'm desperate for answers.
I'm 22 now, ever since the schooling days of from what i can remember. Around maybe 13 years old, i've always woken up with massive fatigue, where i would never want to get out of bed for school and would always be late because of this.
At the time i didn't think much of it because i was young and obviously you think it's normal because you're not wise enough yet to acknowledge a such a problem. So after i graduated year 12 here in Australia, i noticed what a big problem this fatigue was that has ruined my life in ways of being social,working etc.
So i went to the doctors for some answers, at first they were trying to say i had depression, so i went on antidepressant tablets for a while. That didn't help at all. Then i just put up that for a while, not working on being on the doll.
As the fatigue just kept being there lingering, i went back to the doctors and he said well get you to see a sleep doctor. Then when i saw him i got that home sleep study kit to take home and they discovered i had mild sleep apnea and that i should use mouth guard called "Snorer's Friend"
I tried that for a while and got no relief at all, so i went back and said i'll try the cpap machine. No results aswell. Then he said well get you to do a blood test for narcolepsy and didn't have that either.
I've had blood tests for iron etc. Test my thyroid and nothing either. I've been to a ENT specialist and he has checked my nasal passages and nothing wrong there either.
But there is a issue i'm having at the moment called globus pharyngeus, cricopharyngeal spasm i think it's called. I always noticed how sore my throat would feel upon waking up and during the day, even difficulty talking to people because of how uncomfortable it felt.
I started getting into the gym lifting weights at the start of 2012 and was going really well until the next day i was unable to lift my left arm because of my shoulder. So i got a ultrasound on that and said i have inflammation in the bursitis.
So i got a cortizone shot and after that went to a physio to do exercises to strenghten the rotator cuff, after that for a long time, i felt my shoulder got stronger but my trap/neck muscles remained tight.
I saw the doctor about that and he got me to go see a myotherapist. For my first session he said my digastric neck muscle was very tight and said that could be contributing to the cricopharengus spasm issue.
I've seen him 3 times so far and i felt it's improved abit, by maybe 50% and the throat by 50%.
So what i thought was, one time i saw a sleep specialist he looked at my teeth and said it looks like i'm grinding, but nothing came of it. I notice how most of the time during the day my teeth hurt and that sometimes i have an urge to clench them.
So i tried using the mouthguard again and my teeth hurt more after waking up, after using them and the headache i wake up feels like its behind my ears. So i've made an appointment to see a dentist in a few days.
I saw the doctor about the clenching and he thinks its stress related and gave me endep to take before bed. I've been using that for a few days so far and had no relief thus yet.
I got a really healthy diet, i drink a coffee when i get up to get me through when im at work. I also have very vivid dreams.
I could of written alot more but it would be way too long.
So if anyone can help or relate to my story, please give suggestions.
I find it interesting that your fatigue started around 13 years old - did you get braces during this time period? Retraction orthodontics causes sleep apnea.
My guess is that your "mild" sleep apnea is more severe than what the home sleep study states. Home sleep studies are notoriously inaccurate. A sleep study at an overnight sleep lab will give you more accurate results. Don't give up on cpap therapy. More sleep docs are prescribing bipap instead - they work better. bipap therapy takes at least 4months before you see improvement so try to stick with it. The reason why you are grinding/clenching your teeth as this is your bodies defense mechanism against a collapsing airway. It is trying to tense up your jaw to keep your airway from collapsing.
Last edited by Administrator; 03-08-2013 at 04:34 AM.
Thank you soo much for your reply.
I never got braces, but i did notice how sensitive my teeth would be. So i should go back to the sleep doctor and ask for a sleep study at a lab? Also whats the difference between the cpap and bipap?
I even asked the sleep doctor at first to get tested in the lab, but he insisted on the home one.
Last edited by Administrator; 03-08-2013 at 04:34 AM.
I'm a newbie too, but noticed similarities, so i hope what i can suggest will help.
I've suffered chronic fatigue too for years and was diagnosed with fibromyalgia. I too grind my teeth in my sleep and have done since childhood.
A recognised symptom in fibromyalgia is unrefreshing sleep and i used to wake up feeling like i hadn't slept at all. It was so bad, i was on the verge of giving up work.
Then, what i can only describe as a medical miracle happened.
I was suffering from leg cramps and muscle spasms(which was put down to fibromyalgia and a possible neurological issue) and was prescribed quinine sulphate 200mg, one to be taken at night.
Not only did it stop the cramp, but within 48 hours my fatigue had almost gone. My muscle strength also improved, along with my stamina.
It hasn't cured me, as towards the time i take the tablet, i notice the symptoms returning, but as soon as i take the quinine it reverses itself again.
The only slight drawback is that it can upset your stomach, but i find that taking the tablet with a peppermint oil capsule stops this.
I also know someone with Lupus, who takes another type of malarial drug for fatigue(Plaquenil Hydroxychloroquinine) and it works for them too.
I dont know if any research has been done on malarial drugs and their effect on chronic fatique, but all i can tell you is that it works for me.
Good luck with finding something that works for you.
Hey, thanks for sharing your story and nice to meet you.
My fatigue has been soo bad that i've been through many phases. Like is depression the cause of my tiredness? all that kind of stuff.
It's been years that i've been on government payments, because i couldn't do anything from being soo fatigued. In my school days, i always got to school late.
I thought that was a part of me and didn't question it, as when you're that young you don't really know better. That's where people around me like family should of been concerned, except they just criticized me for being lazy.
So after struggling through school and barely passing year 12, because i had a very low attendance score, i didn't study because i was always fatigued. I went on government payments mentioned above and just always stayed home and was depressed.
I eventually got a job at a glass factory for cars and only stayed there for 3 months i think and couldn't take it anymore, the toll it took on me was immense.
Then a few years later now, about 8 months ago i got a job at a supermarket in the deli and now i feel like quitting that to. The way i feel at work is very bad. Soo drowsy, fatigued and dizzy.
I'm also having other problems like my neck digastric muscle is soo tight, that it is causing my throat to have cricopharyngeal spasm. So i've been seeing a Myotherapist so far who has been treating it.
I've seen him about 5 times soo far and it's improved by maybe 50%, but i feel like something is preventing it from getting better, as i may think in my sleep the grinding of my jaw maybe tensing up my throat muscles everynight, but i am wearing the mouthguard though.
I'm in such a hard time in my life now, i don't want to give up. I have high motivation to get better, but it's soo hard as i feel like a zombie all the time. My eyes have developed little bags and i have abit of black under my eyes.
I live with longterm health problems too, but try to live each day with a positive mental attitude.
I am grateful for lots of small things in life, such as the sun shining, or public transport arriving on time and i find it helps. My neighbour is blind and whenever i walk with him i take extra notice of the landscape and the birds.
By concentrating on all the positives, it helps to push the negatives out of my brain.
Whenever i am particularly ill, i take one day out of life, where i contemplate and rest, away from people, to recharge.
Stay strong, spread kindness and keep living each day as a new start.
Someone your age should not have this level of fatigue. I would like to see you have a complete physical with repeat blood tests and a few that probably have never been done. Many people with low thyroid are told their thyroids are fine. I wonder if you have an autoimmune thyroiditis that is causing the sensation in your throat, diagnosed as globus. Globus feels like when you have a terrible "lump in your throat" from emotional distress. It is intermittent and doesn't last for years, but Hashimoto's thyroiditis does, and can feel like a swelling, aching discomfort in the neck/throat. I wonder also if you might have chronic viral infection from EBV, the virus that causes mono. Some people get mono, may not even know they have it, and they continue to have viral activity. I would also wonder if you have chronic inflammation. All these things can be tested for in the blood. Autoimmune thyroiditis: test for anti TPO and anti-TG antibodies, plus TSH, free T4 and free T3. EBV panel for assessing chronic viral activity, and sed rate, CRP for a general check of inflammation. It would help to know what diseases if any run in your family. One other asutoimmune disorder is Addison's disease, an underfunctioning of the adrenal glands. That requires a serum cortisol level for inital screening. Pursuing the sleep apnea is a good idea too, as the fatigue may have more than a single cause. Good luck, keep trying to get to the bottom of it, as it may be treatable and you could have a whole new life.
Thanks for posting. So i should go to my GP and get those blood tests done? If you can please write down in a set list of what i should get tested.
It's soo bad when i get out of bed. I'll try to explain how it is when i wake up.
Always just before i get up, it will always be a vivid dream like something thats happened in my past, like people/events but like revisted in a different way. Then i open my eyes and feel soo drowsy, that i will just end up going back to sleep again, thinking i'll try to get another 30 minutes in.
Then i end up getting up again and my eyes are very sore, i have a very heavy head feeling. Then i'll sit at the edge of my bed for a few minutes to try get my head together. Then when i stand up i feel like the feinting feeling and loss of balance.
When i look in the mirror i look very pale, like a zombie pretty much and oily skin which i use minocyclin to prevent pimples. I work maybe 20 hours a week, which isn't much but for me it's soo hard.
I work at a supermarket Deli, which requires you to be social. Talking to customers etc and the hours is shift work.
The hours might be, 3pm to 6pm, 4 to 7 pm, or ones like 3pm to 11pm etc. I will go to bed generally at 3am to 5am and wake up at like 2pm to 3pm, because that's what i've fallen into. But no matter what like in the past i've had a routine like school where i would go to sleep early and wake up early and would be the same tiredness, so obviously the quality is what matters most.
Generally through the day, i'll get up and eat a healthy breakfast meal. 30 mins in the fatigue just attacks me and i'm forced to have a strong coffee. Generally 2 spoons. Then if i have work i generally wake up an hour before it. Then i'll have my meal at work, come home and relax for a few hours then go to gym late at night, it could be 9pm,10pm,11pm and even 12pm. Depends on my work hours.
That's pretty much how my days go. I'm not able to do anything else, can't just think hmm i'll go to the beach today or for a walk, the fatigue is really cumbersome. I'm a really a positive person, that has soo much more potential, but at this moment in my life, i'm held back soo much it is soo depressing.
Edit: In regards to the chronic inflamation, what is that? A few months ago i was at the gym and was doing calf exercises, noticing later on in the day my right big toe was numb at the index so i saw the doctor the next day and he says it was just a pinched nerve or something and should come back to normal after a week, but it's still numb after a few months.
Just had the hospital sleep study done. Surprisingly i was able to sleep, i think i got 7 hours there. Now i have to wait till the 9th of april for the appointment of the sleep specialist to find out the result.
The sleep specialist will not do the workup I mentioned before, but a rheum would be best to start with or your PCP for some initial screening. Chronic inflammation causes fatigue by releasing cytokines, chemicals that lower your energy. Inflammation can cause joint pain, swollen sore lymph nodes, inflammation of skin, kidneys, GI tract causing diarrhea, headaches, many of the symptoms you complain of. Please print my previous post or make a list from it of the tests I suggested so you know what to ask for. I hope you get to the bottom of this!
Yeah, hooray! Your Dr. ordered everything I mentioned but the serum cortisol. That is an excellent start! The cortisol can be done later if needed. I don't know what an FBE is, the other tests are electrolytes and liver function tests. Good job in being assertive and asking. It paid off. Please let us know how you are and if anything shows up to explain your fatigue when you get tests back.
So now im going to do the 24 hours urine cortisol. In the past i had stomach issues the doctor got me to do a coeliac antibodies test and he said it was just mildly over the limit or something. But i had a gastroscopy in the past to test for coeliac disease and it was all clear.
But he says well do the antibodies test just to see again. I also got a referral off of him to see a rheumtologist, for his opinion.
I am really lost at this point. What other options is there for me to do now? Pretty much i'm waiting for my follow up appointment for the sleep study which is at the 9th.
The cortisol now and the opinion from a rheumatologist. Should i get my iron levels checked again or just wait for the rheumatologist?