Hello Sem,
I have a similar pattern of fatigue. I've had it for 15 years. It started off only affecting me in the morning, then it extended further into the day – late morning, lunchtime, late afternoon, until finally I only had a few hours in the evening when I felt normal. I feel very drained, also a bit faint, especially if I do any exercise. I also can't stand still for long e.g. in a queue. I look a bit pale in my face and people say I look tired. The fatigue seems to be located around and behind my eyes, in my head though, it's not actually tired eyes. (I don't usually have a headache though.)
Once the feeling wears off, I feel completely normal, and quickly try to do chores and exercise late in the evening, like you do!
I thought it might be reactive hypoglycemia, but having a snack doesn't seem to help so that may be ruled out – still trying to find out on that one. My other thought was a circadian/biorhythm disorder, but the specialists only seem to look at sleep problems, and I don't think it is a sleep problem. I will try to look at migraine next, although my symptoms don't really fit migraine. POTS seems ruled out because I don't have tachycardia.
Nobody seems to be able to grasp the fact that it wears off at a certain time as being the key piece of information. They keep investigating vitamin deficiencies and other causes that couldn't possibly be causing symptoms that wear off every afternoon.
It surely must relate to something cyclical in the body.
Cheers,
Sarah (in Australia)
Hello Sem,
One more thing – I have been reading a bit more about POTS and discovered that there are various forms of POTS, as well as a range of other autonomic disorders (dysautonomia) that can cause fatigue and headache, not necessarily involving tachycardia. I am not sure if you have been tested yet for this, but as you said you had headaches I just thought I'd mention it.
One experiment would be to get out of bed one hour earlier or later, and see if your fatigue wears off one hour earlier or later. I haven't tried this myself because I am a bit unwell with another medical problem (unconnected) and am just too tired/disorganised at the moment.
Cheers,
Sarah
Is that reactive hypoglycemia?
I MIGHT'VE FOUND A SOLUTION FOR US ALL...
I've endured identical symptoms and relief efforts since my CFS began ten years ago (after a severe bout of mono). I've since significantly adjusted my lifestyle -- I exercise daily (when possible) and eat very healthy (processed/grain/dairy-free, mostly fruit/vegetables/fish) which has helped but not sufficiently. After trying numerous doctors/supplements/therapies I finally tried low-dose Naltrexone and instantly realized astonishing results. My CFS (and recent rheumatoid arthritis) issues subsided and though minor setbacks persist two months into it (typical symptoms one day/wk, insomnia/vivid dreams side effects), I'm very optimistic as I experiment dosages/etc. (currently 2.5mg/day).
I feel like I'VE GOTTEN MY LIFE BACK (!) and highly recommend any fellow CFS/MFS/RA sufferers to explore LDN. Please reply on your LDN experience if applicable... Thanks, Mike
Thanks for writing!
I had heard of similar cases of success with LDN but have not tried it myself yet.
I have the exact same symptoms.Are you sure it's not CFS?There aren't any tests to confirm or reject it so I doubt your doctors can say anything with certainty.For me PEM symptoms had at least 24 hours delay from anaerobic exercise so I wasn't aware of it for years because I didn't connect the dots.But I think PEM can hit much faster from aerobic exercise.
Anyway your case looks like brain inflammation.There are a few things to try but what helped me was pramipexole, it was the only thing out of a ton of trials that worked and worked pretty well.It has a difficult titration up but once you get to the therapeutic dose and stay there about a week you will see the benefits.You start at 0.5mg and increase 0.5mg every week.You take one dosage at night, it will make you sleepy.As you are getting used to it you will get the opposite effect, it will make you more tired.You get used to a dosage when you stay at it for a week or more.As you go up you can make a stop at 1.5mg, which is at the lower range of the therapeutic dosage range, wait 7 days to start seeing the benefit and if it's not enough set the next goal to 2mg and do the same (wait 7+ days when you get there to gauge the 2mg dosage).
The average working dosage according to Fawcett's study is 2.5mg (-+1mg).Don't let the diagnosis of the patients in the study let you down.It wasn't typical depression to begin with, those patients had an average of 6 failed drugs.Treatment resistant depression could be anything, perhaps something neurological that causes depression as a side effect but it isn't the main issue.Specifically, I suspect that almost all these patients had brain inflammation which caused the depression and the failure of the antidepressants, that's why pramipexole worked for 76% of them, when everything else failed.Pramipexole is protective and antiinflammantory in the brain.I hope you see this because I really think it will help you.I know how big of a journey this is, I was lucky to find this, I could have easily tried 10-20 more supplements/drugs and still be at square 1.
Obviously you should ask a doctor about it.Mine was against it and that was the reason I quit it and tried his suggestion (wellbutrin) which has failed.I will negotiate getting back on pramipexole because I really thing he exaggerated the issues of this drug.In any case, if you decide to quit it you must be very careful to do it extremelly slowly, much more than titration up.You should reduce 0.25mg every 2 weeks.Good luck.
Oh and yeah, I saw the comment above and I remembered that I am also using LDN.It does help with brain inflammation but very little in my case.In fact, when I was on both I attributed that feeling that something took care of that inflammation/fog to LDN, because I didn't know then that pramipexole has such properties.When I quit pramipexole and continued LDN the symptoms came back and I realized that pramipexole must have antiinflammantory effects in the brain, so I looked it up and it looks like it has, and quite much so.
LDN is pretty harmless, you can add it anyway, just avoid opiods at least around the dosing time.
I'd say that LDN gave at most 20% of the inflammation reduction, pramipexole gave at least 80%.
I fainted 3 years ago and hit the back of my head badly and have experienced these symptoms chronically since then. Mainly dizziness (especially in supermarkets or when i turn my head), fatigue and difficulty concentrating all while having dull pain in my neck.
Ive tried every treatment, often with multiple practitioners and was getting no where. Then my 4th physio was a specialist in post-concussion syndrome and after a few massages and some excercises to strengthen my neck muscles, I feel a lot better! I believe the problem for me occurs because of injury to the sub-occipital region.
I hope this helps someone, as I was so lost for a long time and frustrated that no doctors knew what to do.
Hello there. I have similar condition already for 10 years with better and worse periods.
Usually I wake up and feel good and then after minutes up to 1 or 2 hours I start to feel brainfog, fatigue, can't focus, pressure in head, weird vision. This is going through day and then in late afternoon or in evening I start to feel normal and healthy again.
Since doctors after many tests found nothing wrong with me, I was said it is psychological issue many years ago and I spent many years on antidepressants. Recently in two years out of antidepressants and I have no depression and anxiety is also very low levels. But my condition is same. I really don't think it is mental disorder since I tried so many drugs and nothing seemed to help.
I can't find connection. I'm trying elimination diets since I also have problems with bowel movement and have pretty often diarrhea.
Also in trying to find some connection with light. Eventually I exchange all my bulbs home to classics ones. I'm trying to to find any connection with LED screens since I also by light sensitivity and swelling eye lid. But to be honest I don't know if is this also related to original issue or is it another one caused by spend too much time to looking to PC.
I'm trying to live as normal life as I can buy its hard to be honest.
If anyone find what is wrong with us. Please let me know. It has really affected my life a lot in negative way and doctors gave up long time ago.
Hello Martin,
Has anyone checked for POTS or orthostatic intolerance?
https://www.potsuk.org/gp_guide
Also, sinus problems or migraine?
I feel fatigued, weak and have trouble concentrating in the morning too. Then it wears off and I feel normal in the evening.
It's really hard waiting around most of the day to feel better ... I live in the country so there's not much to do at 10pm here!
Regards,
Sarah
I have the same cycle. It's so frustrating to go to bed feeling good but knowing it is going to start all over again the next day.
Have you made any progress?
I wanted to post an update on my situation. Before I said I was diagnosed with Neurocardiogenic Syncope from a tilt table test. This is a dysautonomic disorder. I eventually went to the dysutonomia clinic at Cleveland Clinic and they diagnosed me with POTS instead. I strongly suggest anyone who stumbled upon this thread and cannot find answers to do a Tilt Table Test. This is what sent me down the road to recovery.
I have found working out is my quasi-cure. If I stick to a regiment of biking 3-4 times a week (30 minutes - 1 hour) and trying to fit in a couple weight routines every week or every other week, I feel a lot better. Not 100% all the time, but definitely liveable and manageable. This doesn't work for everyone, but there are a plethora of suggested treatments for those with dysautonomia - in particular:
- increased salt intake
- increased fluid intake
- compression stockings
I crash on days where my salt is too low - 3,000mg seems to be the good number for me - combined with exercise.
https://my.clevelandclinic.org/health/articles/6004-dysautonomia
Good luck all. Get that tilt table. It sucks but it's worth it to find your energy again.
Hi, I discovered this forum as I have had similar problems with brain fog/fatigue/chronic sleepiness.
If you have had CT/MRI procedures without any conclusive answer, this might be worth looking into,
especially as you are histamine intolerant
https://www.nhs.uk/conditions/mastocytosis/
It may help
Good luck
Hi Sem,
What you described above is my situation almost exactly. Like you, I find it very strange that the brainfog/fatigue begin around the same time every morning and end around the same time every evening. I feel like this is an important clue, but I can't crack the code (and neither can the doctors I've seen.)
A few things to add to the conversation:
For me, when I exercise lightly (such as a brisk walk or gardening) my brain fog is improved. However, when I exercise more, like my three mile runs, I find myself shaky, fogged and sluggish enough that I often have to sit down for half an hour before I have the fine motor skills to shower. As I run, the road seems to buckle and wave in front of me, with lots of fog and blurry vision. Anyone else have exercise issues?
Also, I have discovered that I have a strong sensitivity to gluten. I tried GF for one of the many diets I was assigned, and then every time I tried to eat it again, I have strong depressive symptoms for about 48 hours afterwards. Every time. I don't know how or if it relates to the other issues, but I thought I'd throw it out there since you mentioned that you tested sensitive to gluten.
Lastly, a few times I've been rushed to the ER for sudden nausea, Kussmaul breathing, strong shaking and difficulty talking. I'd go in by wheelchair too weak to walk, would be given fluids and walk at normal again after an hour or so. One time they tested Ketones in my urine, and diagnosed Ketoacidosis, but I don't have diabetes and wasn't fasting. Anyone on this thread have a similar experience?
iI have also noticed i start to feel reasonable towards evening and thats when i do stuff. i wake up every morning feeling like death so now if i need to go to the supermarket I go in the evening. Ive had CFS for 10 years now and I cant find what triggers the symptoms or what makes the improve. its very strange.
Hello again Sem,
I just wanted to make another suggestion - has anyone looked at your blood volume? It would need to be measured when you have symptoms (daytime) and when you feel better (evening).
I have been struggling with this aspect. Clinics and medical test centres tend to be open business hours, and this can't accommodate differential testing for symptoms that change from morning to night.
Regards,
Sarah
i have the same thing for 13 years now. It is awful. i understand everything you are saying. Doctors are useless. i've given up many times on them. one thing i am getting ready to try is NAD iv infusions. i just listened to a podcast and the guy sounded similar to us. He said it healed him and changed his life. i'm not sure if i can share the podcast here or not.
please message me if you don't get the link.
Hello Sem,
I have another suggestion for you – abdominal blood pooling, aka splanchnic hyperemia. Blood pooling in the abdomen can cause fatigue and weakness because not enough blood is getting to your brain. It can be related to upright posture, to blood being diverted to your digestive system after you eat, or to both. (Also to some serious liver problems and trauma injuries, but I won't list those here because doctors would already know if you had these.)
You can also have blood pooling in the legs.
Hypovolemia (low blood volume) could be involved. (That is chronic "mild" hypovolemia, not the acute kind of blood loss/shock.)
Blood pooling can be treated with compression garments, of course with your doctor's supervision.
Some people also find salt & fluid loading helps (again under the care of your doctor). People with very serious symptoms (frequent fainting and severe debility) may be prescribed IV fluids. These two interventions help by raising the blood volume.
I have discovered that I have abdominal pooling and my symptoms are improved with abdominal compression (not 100% but definitely improved). I don't have any signs of pooling in my legs, and as you can't "see" blood pooling in your abdomen, I only discovered this by chance when working my way through a list of interventions for orthostatic intolerance (OI).
I still don't know why I feel better in the evening or whether I have hypovolemia (waiting to see dysautonomia/OI specialist) but I'm very happy to somewhat relieve the daytime symptoms.
Something worth investigating with your doctor.
Cheers,
Sarah
Good evening, after reading your post, your symptoms are identical to mine except for the
diarrhea. Even your description of issues with light match me. I am wondering if you have made any progress with your diagnosis? I have been dealing with this 5 months, the Doctors are just passing me around, they never have answers but they sure do get the bill out on time. My Primary Care Doctor wants to do a psychological evaluation and I think put me on anti-depressents just like they did to you. I know my problem is real, but if your Doctor does not believe you, your hopes of being properly diagnosed are slim. My wife and I are considering trying to involve the Cleveland Clinic, since several people seem to have had good luck with them. Do you have any advice or comments that might steer me in the right direction? Any help at all would be appreciated. Thanks so much in advance!
Sem,
i share the same problems with you. While I don't have a solution for you, you might find some clues in what I write.
First of all let me tell you that although exercise and diet might be a contributing factor that worsens your problem, it is not the cause. I have lived a very healthy life with Japanese healthy food, mostly vegetarian and exercise every day.
Excise does boost your mood and gives you a better sleep. But still I would wake up in the morning and feel just like you until afternoon.
Coincidentally, I found out that I have ADHD. Which gives me all kinds of problems. You can look it up and see if you also have it. 75% of adults seem to have it. In my case it would impede my otherwise very fluent speech abilities, and gives me a hard time focusing, or makes me sleepy if i have to listen to something not of my interest. But there is much more it does to me.
When my doctor gave me steroids for my asthma, I noticed that I started to feel like newborn. Full of energy, speech fluency was back.
My doctor said it could be a serotonin-dopamine Imbalance. Steroids do affect serotonin levels.
But it doesn’t do anything for ADHD.
That’s where ADHD medicine comes in which does affect dopamine and another chemical in the brain. All of these chemicals are responsible for our moods and energy. Many years of stress,heartbreaks and all kinds of deep worries can cause imbalance.
And all that gets worse with the wrong lifestyle.
Sleep patterns: One important factor in my lifestyle was irregular sleep patterns. Waking up at the same time even if you couldn’t get your 8 hours that day seems very important.
Bright light: First thing in the morning, go outside and look up to the sun( not directly into the sun) This will raise your serotonin levels.
If you have depression or ADHD you will need treatment.
About depression I want to add that there are two different types, unipolar and bipolar depression. The ladder has moods swings ranging from very high to very low.
Conclusion: if you have irregular sleep patterns but no depression or other symptoms it is probably just the sleep patterns.
In all honesty, I think diet and sport is overrated. In fact athletes seem to live only 1-2 years longer in average than someone who doesn’t exercise. I do think that at least walking or moving is quite important. Office jobs were you sit all day is the worst.
As for diet, I can assure you that as long a you don’t eat unhealthy food regularly it doesn’t matter what you eat as long as you get your basic nutrients which you get if you eat normally. I had my most healthy and vital 6months while backpacking through Japan and I ate mostly bananas during the day and a normal Japanese meal in the evening. I did drink a lot of water and walked basically all day. So don’t waste money in bio products and expensive supplements. They won’t make you healthier.
although our issue is not identical it is very similar. it doesnt matter how many hours of sleep i get, i feel totally horrible in the morning. once i have breakfast and a bath, i start to feel better and i feel totally fine in the afternoon. my doctor has suggested Fibromyalgia but i dont think there is a test to confirm this.
As a result of this i never schedule appointment or outings in the mornings because most mornings i have to force myself just to get thru the morning. i feel like a totally different person in the afternoons.
i have regular medical checkups and tests.