My 4 year long fatigue issue – and how I recoverred

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I’ve been suffering from an ever growing fatigue issue for 4 years. The cause was something rather unexpected, and I did recover. Since there are so many people suffering from a fatigue issue, often catalogued as chronic fatigue syndrome, and so little seems to be known, I decided to share my experience. This is my story, this is not medical advice. But if you do suffer from a severe fatigue or chronic fatigue syndrome, you might check my story and discuss it with your doctor(s).

Jump to latest update: 01/04/2018

The story begins in the Summer of 2012, when I returned from a hiking trip in the Italian Alps (you can see pictures of that trip here). It was a rather challenging trip, with day hikes going up and down over 1.000m in altitude. Which is not a walk in the park with a heavy backpack (7 to 8 kg), but I managed. I even noticed that I was never out of breath. I could manage the climbs with a normal, steady breathing. I didn’t take notice of that at that moment, it only became clear much later…

When I returned, I was still very tired. Even after an extra week of vacation to relax. And it stayed like that, even after a month. This was my first trip to the GP. He checked the fundamental things, including blood analysis, but he couldn’t find anything… “Just wait some more, you might need some more time to recover than you used to… “ (I was 47 at that moment)

A few months later, I had an appointment with the doctor that treats me for apnea. I have been diagnosed with apnea in 2004 and since then I’ve been wearing an MRA-device (Mandibular repositioning appliance). She suggested to turn the screw a little bit more, but that didn’t help.

In September 2013, one year after the fatigue started, I applied for a sleep examination in one of the leading sleep clinics in the neighborhood. There was a long waiting period, the exam took place early February 2014. The result was that I had to take another one, in July 2014: I had worn my MRA, which I shouldn’t have done (nobody told me that upfront…). And my apnea score was ‘only’ 17 (so 17 times/hour my breathing stopped), which was not enough to move to the stronger equipment, the CPAP-device. During a small test, it was also revealed that I’m allergic to mites, since then I’ve been taken a nasal spray for that.

Every 45 seconds…
The sleep exam in July, without MRA, revealed that I had very severe apnea: 80 times per hour my breathing stops… That’s every 45 seconds… No wonder I was very tired. So it was no problem to get a CPAP-device. In September I got my CPAP and the message was that I should start seeing CPAPimprovement after one month. But after one month, I had no progress. At that time the doctor that treated me told that the 80 apneas/hour is extremely high, in such cases, it can take 4 to 6 months before there is any progress…

During that period it became more and more difficult for me to work full time. On many occasions I had to return home to go to sleep. I also had ‘micro sleeps’ while driving my car. I had holes in my memory. I had problems finding the right words (or better: I knew the words, they were in my brain, but I couldn’t get myself to express them). I couldn’t drive my car for one hour. And even though I slept 10 to 12 hours/night, I was exhausted, almost every day.

In December 2014, I had to go back to the sleep clinic for a routine check, with another doctor. Since he saw in the report I also suffered from ‘restless legs syndrome’ , he suggested to start special medication for that. Special medication since you have to apply for that… And it didn’t help. I stopped after a week: I had more negative effects than positive ones. After a few consults he, reluctantly, said he could not help me anymore. He had no more ideas. And he referred me to the psychologist from the sleep clinic… That’s the way it goes: if they can’t find anything physical, it must be in your mind. She was rather busy, so the appointment was only in May 2015.

In April 2015, I had another appointment with the first doctor in the sleep clinic, the one that said that in my case it could take up to 6 months before I could see progress. Those 6 months had passed, without any progress, now he was also out of ideas. At that moment I stopped working, I went in to sick-leave. I couldn’t function normal anymore. I had been fighting the fatigue already for a long time, I couldn’t go on like that anymore.

The appointment with the psychologist was rather brief, she quickly found out that my problem was not a psychological one. She referred me to a doctor that specializes in internal organs, but said that I’d better try it somewhere else, since waiting times were quite long in the hospital…

But one advice from her was a good one: when looking at my blood analysis and knowing that I had restless legs syndrome, she suggested to take extra iron and vitamins B12 and B6, since these levels were rather low. Not below the normal threshold, but still quit low. And this indeed helped resolving the restless legs syndrome.

The old and wise doctor
My GP referred me then to an older doctor, who is also an engineer by education. I met him in July 2015 for a thorough examination. And for the first time, I had a good feeling about my problem. His conclusion: my body produces way too much lactic acid (4 to 5 times the normal values) and because my sleep quality is poor, the lactic acid isn’t broken down during my sleep, preventing my muscles to regenerate. A possible cause might have been my thyroid, which was very large (after taking medication for some time, it shrank to normal proportions). But he also referred met to an ear/nose/throat specialist (ENT) in another hospital, he wasn’t that fond of the first hospital where I had my sleep exam.

Deformed septum, sleep endoscopy
So a few weeks after his diagnosis, I went to the ENT for the first time. After explaining my situation, he looked at my nose with an endoscope and immediately saw a big issue: my septum was completely deformed, preventing easy breathing. The first doctor in the first sleep clinic, was also an ENT, but he never noticed… He also suggested to do a sleep endoscopy, he was surprised that the first sleep clinic didn’t do that, with 80 apneas/hour…

The sleep endoscopy revealed that everything that can rattle, will rattle: nose, throat, palate. Hence my strong apnea.

There were two possibilities, but I opted for a combined surgery: septoplasty, to straighten my septum, and somnoplasty, to treat the apnea. This surgery was done at the end of November 2015.

Smart watch to the rescue
Just before the surgery, I had bought a Microsoft Band 2, a smart watch that has a very good sleep tracking. Since that day, I’ve been wearing and using it every day. This was a really good investment, I can recommend it to everybody with a fatigue issue! Really!!!
(update 04/10/2016: it seems that Microsoft has discontinued their smart watch… 🙁 )

This screenshot shows a ‘bad’ night. Dark blue is the deep sleep, light blue light sleep and orange means time awake.

And this is my best night ever… This amount of deep sleep happened only twice during the 10 months I’ve been using the Microsoft Band 2.

So the surgery went well, after one week everything seemed to be ok. But then something silly happened: I went to dinner with my girlfriend and it was very hot in the restaurant, while freezing outside. At a certain moment, my nose started bleeding, something that has happened before when going from (very) cold to (very) hot. But this time it didn’t stop bleeding… I had to go to the emergency room, twice… It took 6 hours (!!!) before the bleeding stopped, and it only stopped after putting a balloon in my nose and blowing it up (of course a special type of balloon, not a general party-balloon). And I had to stay in the hospital for three days…

Several good weeks
When I returned home, my sleep quality was very good and I really started to recover. For about 3 to 4 weeks, the amount of deep sleep was around 3 hours, the amount that seems to be the right one for me (yours can be different!). But after that, the amount of deep sleep went down, returning to the level before the surgery… And the fatigue also returned, very badly.

Since I had to return to the ENT for follow up, I discussed this with him. And I suggested that it might have to do with the nose bleeding, the balloon that was blown up inside my nose: could it be that this pushed my nasal passage wide open, getting a better air flow and then gradually returning to the normal position? The ENT was not really convinced, but he did not reject it either.

Wonderful nasal spray…
At a certain point, when I was asking to try a nasal stent, he prescribed me a nasal spray (Nesivine, oxymetazoline hydrochloride), that would open up my nasal passage, to check my theory. And it worked… It was unbelievable! My sleep quality improved significantly, my fatigue slowly started to disappear. But: it’s not a ‘gentle’ spray… you can only use it for a limited amount of time. So I used it for about two months, alternating 4 days of usage with 6 days of not using it (more or less). And the result was good, I was finally starting to recover and I was thinking about going back to work, on a part-time basis.

…that stopped working
But then the sleep quality went down again, the spray stopped working… This was a bad hit for me… I thought that I finally had a solution and it stopped working. The ENT had already suggested a permanent solution: another surgery, to widen my nasal passage by removing some flesh. But before doing another surgery, he first wanted to test something else: it seemed that the nasal spray stopped working at the moment when the pollen season began… He prescribed some anti-histamines, there was a slight improvement, but not significantly.

So on 19th of July 2016 I got a ‘turbinectomy’, to widen my nasal passage. And, in short, it worked. My sleep quality has improved significantly, my fatigue issue is over. YES!

Abdominal breathing
During a last visit to my GP, when I was talking about my breathing, he noticed that I am breathing the wrong way… I used to have a ‘chest breathing’ (the ‘emergency support system’ according to my GP) and when trying an abdominal breathing, I also did it the wrong way… So he instructed me to do it the right way: first push all the air out of your lungs, just like you would push all the water out of a sponge and then relax to let the air flow in (I used to pull the air in and then relax to let the air flow out when I tried abdominal breathing).

Now that I had the turbinectomy and I’m exercising the right abdominal breathing, things are changing fast… I still sleep 10 to 11 hours a night, but I feel ok when I get out of bed, which was not the case the past few years. And I don’t need to get some sleep in the afternoon… I hope my nights will get a bit shorter, so I can stay up a bit longer. But at this moment I’m already extremely happy that the fatigue issue was solved.

Also a big change: my muscles are growing again. My arm muscles are certainly bigger, my legs are feeling different from before and are also more ‘solid’.

With all the knowledge from the different examinations, all the pieces have fallen together: my breathing was insufficient, I didn’t get enough air in my lungs, which made my body go into the anaerobic metabolism, with the lactic acid as a ‘nasty’ by-product, preventing the regeneration of my muscles.

‘Nose hygiene’
There are two more things: a ‘nose dilator’ and good ‘nose hygiene’. Earlier this year I started testing a number of ‘nose dilators’, to physically keep my nose open during my sleep. The only one that worked, was from Mute Snoring. I’m still using that on a daily basis.

And then there is good ‘nose hygiene’,  to keep my nose ‘free’. Every day I use a nasal shower, once or twice. And I also use ointment and nasal drops (both from Rhinovita), as ‘maintenance’ for the nasal mucosa. By using these on a daily basis, my breathing is much easier and my energy levels are rising. And this, combined with the nose surgery, made me conquer my 4 year long fatigue issue. By definition I was a patient with chronic fatigue syndrome, but I found the cause, and I recoverred. Fortunately.

PS (08/12/2016): it seems clear that my problem was air/oxygen related. Now that I have more air flow, my fatigue disappeared. But there is one thing that is weird: I never had a low SpO2-level in my blood… I bought a pulse oximeter to measure this and over a period of 30 days the levels were ok. Also in the sleep clinic, during the several surgeries and visits to the hospital my oxygen saturation level was always ok… So it seems that current medical technology is missing something, is missing another parameter… This seems something worth investigating.


UPDATE 23/12/2016: the past few weeks I’ve met a number of people who have known me for some time, both personal (e.g. family) and professional. And they all said the same thing: that I’ve never looked this good. My skin color looks healthy (I used to look pale to very pale the past years), my eyes are shining again (they were rather dim the past two years). And I’m also feeling much better. How improbable it might seem, enlarging my nasal passage solved my fatigue issue. Could a limited air flow be the cause of chronical fatigue? It’s certainly worth investigating… I’m the proof that at least in some cases it is.

UPDATE 02/01/2017: I just returned from a hiking trip on snowshoes, in the Alps (you can see the pictures here). A hiking trip that was rather strenuous: every day we had to overcome between 700 and 900 meters in altitude, with a backpack of 7 to 8 kg. That is not an easy ‘walk in the park’. But I did it, even without being exhausted. There were a few difficult moments, but compared to comparable trips the past decade, this time it was rather easy. Which is amazing: only a few months ago I was still on sick leave, physical efforts were a real problem, I ‘crashed’ on a regular basis. Half a year ago, I couldn’t even drive 1 hour with my car, now I drove the larger part of the 1000 km trip from Belgium to the Queyras region.

It is amazing what the surgery, what the enlargement of my nasal passage and a correct breathing technique did to me. It really changed my life. I haven’t felt this good in a very, very long time. My physical condition hasn’t been like this in a decade, or even more.

The air was rather dry in that part of the Alps, which resulted in very small bleedings in my nose and therefor lots of crusts in my nose. Which limited the air flow during my sleep and this was shown in the sleep tracking: the level of deep sleep went down significantly, the last night I even had no deep sleep at all… Once again the proof that my sleep quality and therefor energy level is linked to how ‘open’ my nasal passage is.

Looking back at this 4,5 year ‘adventure’, I have to conclude one thing: doctors, medical experts are (often) missing the obvious, the need for a healthy breathing, a healthy oxygen intake. That’s where my fatigue issue started, that’s where it ended.

My advice: when confronted with a chronic fatigue, start checking the breathing, the air flow through the nose. Apply a good nose hygiëne, keep your nose open during your sleep, e.g. by using a nose dilator. And for researchers: the oxygen saturation levels in my blood were (really) good, there is another parameter missing. Try to find it!

My girlfriend and me, at the Col de la Rousse (Arvieux), after a 900 m climb. This kind of hike wouldn’t have been possible a few months ago.

UPDATE 18/01/2017: this morning I paid a visit to the old, wise doctor. And again I did the full arsenal of physical and lung tests. The results were what I expected: a strong improvement. Which was a pleasant surprise for the doctor. And he was very happy, with the result but also with the diagnosis which led to the surgery, the solution of my problem.
Below is a graph with some important parameters from the tests.

VO2 max: maximum volume of oxygen; AT % VO2 max: anaerobic treshold at VO2 max; VC max: maximum lung volume

In the graph above, AT is a percentage of the measured VO2 max, which might be interpreted the wrong way. In this graph I mention the measured VO2 max values and I recalculated the % AT to the real number, which shows the real increase better.

And with this, the final chapter of my fatigue problem has been written… Finally.

UPDATE 01/09/2017: a few weeks ago I started using a new type of CPAP mask. And what a difference that makes! Although the small surgery last year cured my fatigue issue, this new mask is again an improvement, I’ve never felt this refreshed in the morning. I’ve briefly tested a number of masks, but this one gives me the most air while breathing. And I guess it also has less air leaks while sleeping. The new type is Amara View from Philips. 

UPDATE 01/04/2018: the last month I’ve tested a new device, a headband, called Dreem, which analyzes your sleep in real time via EEG-sensors and boosts the deep sleep phase, via pink noise. I’ve tested a number of scenarios. The main conclusion: the sleep boost works. I have over 1 hour extra deep sleep, compared to a week without the sleep stimulation and I’m waking up half an hour earlier than before. Next to that: the Mute Snoring nasal dilator gives me about half an hour extra deep sleep. You can read the full review here

UPDATE 30/06/2019: this week I heard a very interesting story, from a friend of friend. It’s someone who suffered from fibromyalgia, but he healed from that devastating condition. How? Breathing exercises… It may seem impossible, but my friend knows him quite well and he has seen how he got ill, how he couldn’t do anything anymore and how he got cured, how is an entrepreneur again. What triggered his dive into breathing was a documentary on Wim Hof, someone who likes to run around in the snow, on his bare feet, in shorts. I didn’t hear of this method before, but as far as I understand, being in the cold like that forces you to control your breathing. And improves your breathing. The other method the fibromyalgia guy discovered was ‘Breatheology‘. Stig Severinsen, the founder of Breatheology, also has interesting examples: e.g. one of his best friends ones caught Lyme disease and was condemned to a hospital bed. After a few months of intense breathing exercises guided by Stig, he walked out of the hospital, completely healthy again… I know this may sound unbelievable, but I’ve witnessed myself how important breathing is. With examples showing that it has cured at least some people with fibromyalgia and Lyme disease, you should try these breathing exercises! They are simple, the can’t hurt, they are not expensive. Look at the introduction videos at, take a look at the Wim Hof method. It’s not rocket science, it’s kind of rebooting your body, it’s boosting your body functions. Do try it!

UPDATE 06/07/2019: Dreem has launched an update of its headband. And the price has been reduced. And with this code, you can get a 40 euro discount: DTUOXLXWD. Improve your sleep and get one right now!


And you?
If you also suffer from a chronic fatigue, here are some action points:

  1. Buy a wearable, activity tracker or smart watch with a good sleep tracking. It should at least make a distinction between light and deep sleep, if it also detects REM sleep or gives a sleep quality figure, that’s a plus. Make sure that the data can be exported to a CSV or XLS-file! Some brands charge you a yearly fee for that… So do look at that upfront! There are already good wearables for around 100 euro.
  2. Keep a diary, preferably in Microsoft Excel (or a similar program). Enter each day the amount of sleep you got, including the different sleep phases (light sleep, deep sleep, if available REM sleep and/or sleep quality), each in a separate column. Enter the number of steps you made. And evaluate your energy level that day, on a scale from 0 (very bad) to 3 (fantastic). Also note other things that might be relevant, e.g. if you had a bad cold and a running nose, or e.g. a late dinner. Everything that might be relevant.
  3. Create graphs based on that data. A graph is much easier to interpret than just numbers. Based on those graphs you might detect trends: when do you feel better? When did you feel bad? This is an essential step! This is how I discovered that my fatigue was linked to my sleep quality (not illogic), and that my sleep quality was linked to how ‘open’ my nose was… If you aren’t that good with Excel, ask somebody in your neighborhood, e.g. your nerdy nephew. He will be happy to help you!
  4. If you think you have found a pattern, check this with your doctor, or even with multiple doctors. And check if this theory can be tested in some way, to prove whether it is valid or not. If your doctor immediately rejects your theory, go to another one! I was lucky that the ENT and the fatigue doctor both were open to a new theory, but this isn’t always the case… A decade ago I visited a migraine specialist a few times. He immediately rejected my list of possible triggers, he had never heard of that kind of triggers! Impossible! But a few years later, when there was a big migraine conference, he was interviewed on TV and he told about the new discoveries that were being discussed at the conference, among which new triggers. The new triggers he mentioned was exactly my list… So don’t just give up when a doctor immediately rejects your theory! Insist and ask how your theory could be tested.

It is thanks to these action items that I found the cause of my fatigue, the final solution came from the ENT. Hopefully you can find the cause of your fatigue with these action points. Success!!!




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12 Comments on "My 4 year long fatigue issue – and how I recoverred"

  1. Thank you for sharing your insight on the septoplasty procedure. I appreciate the information from someone with firsthand experience.

    • Thanks for your comment! And you’re welcome! Fatigue issues, apnea, breathing don’t get enough attention… so I’m happy to share my experiences.

    • Gabriel Hewitt | 20/08/2019 at 1:31 am | Reply

      I think I have something somewhat similar to yourself although I am 22.

      Since 20 I have started getting nasal inflammation for no reason which tends to be relieved by constant cold airflow and avoiding rooms/ warm environments and lying down. It’s like my nasal airways switch off and don’t acknowledge oxygen is even there. I too had a nasal operation to open the airways due to constant inflamed turbinate with no known cause.

      I used to be remarkably fit and my fitness declined to begin with, and then my general health. I’m currently at my worst and I am sure it’s along the same lines as what you also had. When I fall asleep I wake up and my muscles basically feel very weak and tired and throughout the day I suffer horrible brain fog and just exhaustion (an example would be stuck in a bath which is too hot) – this makes you constantly heady, muscles sleepy tired etc and there is no escape other than waiting for the night where is gets colder.

      I have been in and out the doctors and they keep trying to give me anxiety and depressed tablets but I’m literally neither of these things. I am simply exhausted and the ONLY relief is cold airflow. We are mid summer and quite frankly it’s Been the hardest few months of my life as at 22 I should be in my prime yet I’m physically exhausted.

      I changed doctors and the ENT has stopped me from visiting as he has opened my airways and can’t see any issue. (yet the feeling of not being able to breath fresh air is still present). My new doctor has suggested I may have fibromyalgia. I believe I have not but I will have them analyse me in 3-6 months time. I did ask for a sleep study because I wake up with exhaustion which doesn’t go until late evening (stops me from exercising and doing all my previous fitness) but was denied as I don’t snore.

      • Hi Gabriel, that’s a sad story… What you might try, is breathing exercises. You could check and also I recently heard the story of a an acquaintance of a friend of mine. He had been diagnosed fibromyalgia, but recovered completely after he started with the Wim Hof Method and after that Breatheology. Now he gives workshops and lectures on the importance of breathing (in Belgium, where I live).
        What you also could try, but I can’t give any guarantee since I didn’t try it myself yet, is buying the new Honor Band 5 as soon as it comes available in your region. This one has an SpO2-monitor (oxygen saturation) and this should work all day long (Garmin also has activity trackers with SpO2-monitors but these only work during sleeping). Also the sleep tracking is supposed to be good, but, again: I didn’t test it, so I can’t guarantee anything. This information is just based on specifications I found on the internet.
        Hope this helps…

  2. Hi i was wondering how long it took to notice the results after the nose surgery ? and did you continue to use a CPAP? im one week post op and my sleep is worse ( nose is still stuffy)

    • Hi Marvin, be patient… 🙂 If you refer to the turbinectomy, I really started to feel the effect after about 4 to 6 weeks. And make sure that you keep your nose clean, that’s why the first week your sleep quality will be worse (btw: keeping your nose clean is a tip for the rest of your life).
      I’m still using my CPAP. But the last year I switched to a new mask, with a large improvement, and a two months ago to a new device, which was again an improvement. Do ask your doctor about other CPAP options!

  3. hi, I experienced fatigue for 3 months and had septoplasty and turbinectomy surgery 2 weeks ago. after that, I still experienced poor sleep and fatigue which was still as bad as before surgery.
    You say the effect will be felt after 4-6 weeks, does your sleep quality improve dramatically at week 4? or it should started to improve slowly after the surgery? Thanks

    • Hi Theo,
      don’t expect miracles, it takes time… And it can depend from person to person.
      Plus: don’t forget to keep your nose clean, to breath the right way, to have enough physical activity (many recommend 10.000 steps a day)

  4. Emil Gilliam | 15/11/2018 at 5:42 am | Reply

    For the turbinectomy, did they actually remove your turbinates completely or just reduce their size (for example, by submucosal resection)? Too much removal of turbinates can actually make things worse (“empty nose syndrome”), but clearly you avoided that fate and ENTs are more conservative about operating on the turbinates than they were a few decades ago.

  5. I think narrow/vaulted palates may also be another culprit of chronic fatigue. When you don’t maintain good oral posture (lips together, teeth together, tongue at the roof of the mouth; i.e “Mewing”) particularly during the growing years your palate becomes high due to poor tongue posture.

    Your tongue is essentially your body’s built in orthodontic expander which ensures broad smiles, wide palates, forward grown jaws and increased ability to effortlessly breath through your nose. When the palate is high it pushes into the nasal cavity restricting airflow. When the palate is narrow it also restricts air flow. Furthermore, people with recessed maxillas (typically the same people with narrow palates) also tend to have deviated septums which, as you know, can also further restrict air flow. With difficulty breathing through the nose people naturally turn to mouth breathing which perpetuates the cycle of poor oral posture (low tongue, mouth open) which just worsens high palates over time.

    I also want to point out that people who didn’t maintain good oral posture during growing years likely have down swung mandible/maxilla complex which basically means their jaws haven’t grown forward enough. And if your jaws didn’t grow forward enough it restricts the amount of space in your airway (oropharynx area) just setting up the anatomical stage for sleep apnea. Which basically starves the brain and body of the critical sleep it needs for recovery, as you know.

    So basically altogether with poorly grown jaws and high palates you have a restricted nasal cavity and restricted airway space which leads to poor oral breathing. Oral breathing is associated with a decrease in nitric oxide and likewise nasal breathing is associated with an INCREASE in nitric oxide. Nitric oxide acts as a vasodilator and increases blood flow to organs and plays a role in regulation of binding and releasing oxygen to hemoglobin as well as numerous other functions.

    I wonder if Nitric Oxide is the missing parameter your looking for.

    • Thanks for your comment Brian!
      My jaws are indeed a bit ‘shorter’ than usual and my palates might be high… (the first has been noticed before, the latter not).
      I have had a lot of tests, but when I checked the reports, I couldn’t find anything about the nitric oxide level. But I am always using nasal breathing and I do breathing exercises.
      And as I showed in the article: I no longer have the fatigue issue, thanks to the surgery and better breathing. But I still have to take care of my breathing, of my sleep quality.

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