Does anyone else have fatigue (a drained feeling) that wears off at a certain time each day? I have had this for 15 years, gradually extending longer and longer into the day. It used to be I would feel better mid morning, but now it lasts most or all of the day. I feel very drained, a bit wobbly, can't do anything strenuous, and cannot stand still for long (start to feel faint). I also look a bit pale.
Once it wears off, usually with about half an hour, I feel fine and can do gardening, chores, weight training, even a bit of jogging. It does not appear to be blood sugar related, at least not in a simple way, as having a snack and a rest makes no difference. I do feel a high carbohydrate brekky makes it worse, but a low carbohydrate brekky doesn't fix it. No tachycardia, so that seems to rule out POTS (although it could be another type of dysautonomia).
I can't even find a mention of anything similar in the literature – so frustrating! Some people referred to a "wall of fatigue" descending on them, which sounded just like what I have, only my wall "lifts".
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kushami36
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Yes my fatigue starts to lift about 3 to 4pm and I now do any chores around then. Very strange. I thought at first it was the amitryptaline I take at night but tried not taking them and it’s the same. In the mornings I feel weak and shaky but later on can even hoover!
I'm so glad to hear from someone else with the same timing (not glad that you have fatigue of course, that sucks). I have been searching and searching for any mention of such a thing.
Do you find it lifts fairly quickly? Mine lifts in about half an hour. It's like someone gave me a shot of something.
I have been doing some compulsive googling, and finally found something that seems worth trying:
I don't think I have POTS (no racing pulse), but I do have a lot of these symptoms, so I think my problem lies in this area (dysautonomia). I also read that POTS and OI patients report feeling better in the afternoon than in the morning.
(I had wondered if it was a problem with blood sugar, but thus far tests haven't shown anything in that regard.)
I am seeing my GP tomorrow and am going to request a referral to the OI/POTS program I linked to.
I will post again if I have anything to add. Thanks very much for responding – I really appreciate it.
Interesting! I saw my GP today and she agreed that given that I had most of the symptoms on the list it was worthwhile for me to try the physio program. It's not something she could diagnose, however, so I might also try to see a specialist.
My first appointment at the physio clinic is in early March. I am cautiously hopeful. I will definitely report back once I start the program.
My GP wasn't sure when I spoke to her – she said that if you have tachycardia (racing heart) you would probably be referred to a cardiologist. Some articles mention a neurologist. I think it can be something you always have, or it can brought on by another illness or injury, so that makes it complicated.
Maybe talk to your GP about the symptoms and see what they think?
The article is interesting. I was referred to a cardiologist last summer because I was having missed heartbeats and palpitations. He did an echocardiogram and various tests and said I had a heart murmur but the missed heartbeats were not dangerous. He said if it got worse he’d put me on betablockers.
Hello Pat, I had my first appointment with the physio, but it was all introductory - taking history, explaining the program, collecting baseline data etc. - so nothing to report yet.
I asked at the physio clinic about who usually diagnoses orthostatic intolerance/POTS/autonomic problems, and the answer was "a cardiologist". So it sounds like you have already been checked over by someone who *could* diagnose such a problem. (Not that that means they necessarily would!)
Do you feel a bit worse after showering? I've started showering in the late afternoon or evening, when it doesn't make me feel wobbly or sweaty. Luckily I don't have to go anywhere in the morning at the moment.
I did stumble onto a hospital blood pressure specialist clinic that might be able to help and will ask my GP for a referral.
Thankyou for the info which is very interesting. When I went to the cardiologist it was because of missed heartbeats. He did 24 hour heart monitor and an ultrasound and echocardiogram. He said I had a slight leaky heart valve and ectopic heartbeats. That was it really. No further treatment nor follow up.
Yes I feel dreadful after bath or shower. I tend to do that before I go to bed these days.
Hi, I hope you get better soon. Have you been tested for the condition "Complex Carbohydrate Intolerance" (CCI)? CCI occurs because we lack the enzyme necessary to digest complex carbs. Also, try drinking Collagen Protein Powder EVERY DAY, and take a "probiotics" Bio Cultures Complex 40 Billion CFU with 15 Bacteria Strains, BOTH should really help you. You can buy at Amazon.
Thanks for the suggestions. Although I mentioned that a high carbohydrate brekkie can make me feel worse, that was probably a bit misleading of me. Sadly, a low carbohydrate breakfast doesn't make me feel any better, just "less bad", if you know what I mean!
I have tried various dietary modifications and they have had no effect on the fatigue. Also, it seems unlikely that a dietary factor or food intolerance would resolve every night around 7pm and then return in the morning.
It's all rather mysterious and perhaps someday I will be a case study in a journal.
Sorry I wasn't more clear about the dietary stuff. Thanks for taking the time to read my post and respond.
Hi kishami36 I have surrered with fatigue for about the same amount of time. I had encephalitis as a teenager which is inflamation of the brain, so I know the long term affect of the illness can be fatigue. Each day is a struggle in the winter months, little energy, feeling constantly tiered and as a result means doing tasks more difficult.
Have you noticed what times of the year it is at its worse?
Does anything help with the tiered feeling?
Does it get worse after doing a lot of activity or "brain power"?
I am trying to manage my fatigue by been more aware of any triggers.
I'm sorry to hear that. It is hard to accept that resting or "taking it easy" doesn't fix this kind of fatigue. And of course we still have to get things done even when we don't feel up to it.
I am opposite to you in that I feel better in winter. I never liked warm weather though, even when I was healthy, while everyone else was enjoying summer I just felt hot and bothered and couldn't wait for autumn to come. If we live in opposite hemispheres we could do a house swap!
The odd thing with my fatigue is that it goes away of an evening, and I feel pretty normal then. It does get a bit worse at the time if I push myself to do things in the morning, but it doesn't seem to be affected either way by anything else in my life (diet, stress, sleep).
I have three leads to follow: specialist blood pressure clinic, orthostatic intolerance physio exercises, and possible low cortisol.
I struggle in the morning and evenings with a good productive period between 10-5pm so attempt to get everything done in that time. This can lead to doing to much which makes fatigue worse.
I struggle with over heating but prefer to be outside and the longer warmer days means I can get in the garden, walking and generally more active. The things I have noticed is as I have got older as a sports coach I am less tolerant to long tiering/active days. This resulted in having to stop working last year, currently rethinking lifestyle. I live in the UK so long winters with gloomy skies, but spring is around the corner now 😀
These posts are really helpful as this is the main issue I’m facing now after viral encephalitis. Mornings are worst. But I find I can do thing between 11 and 6 in my case but still have to sit down after about an hour for a rest. Doesn’t take long 15 to 20 mins. My fatigue is accompanied by a ‘tight’ head. Not headache exactly. Again I would be interested if this happens to others.
Sorry to hear that you have been unwell. I haven't made any progress on my fatigue yet, but I'm still working on it.
You could have a look at orthostatic intolerance (OI) with your doctor if the symptoms sound like what you are experiencing in the morning. OI can be caused by having had a serious illness of any kind. There are some fairly simple measures you can try if your doctor okays it.
A low-carbohydrate breakfast is another option. This study showed it helped people with type 2 diabetes regulate their blood sugar better, so it might also help people without diabetes. Again it's something simple to try if your doctor okays it.
(The headline is a bit misleading – doesn't have to be eggs!)
The website painscience.com is an excellent source for evidence-based info on headaches. Tension headaches can feel like tightness. painscience.com/tutorials/h...
The tips on for massaging muscle points on your head sometimes help me with the tight feeling/pain.
Hi! I am new here and am relating to your symptoms. I have saved some of your words so I can research and check out the links you provided. I've simply told my Dr I have been exhausted for 20 years. I take provigil to stay awake. I also take vyvanse for another diagnosis. These allow me to get through the day but I am still tired. If I allow myself, I can go to sleep anytime, day or night and never feel rested. Side note, I fall asleep easily, sleep minimum 8 hours straight and have extreme difficulty getting up. I'm happy I found you and your post! I hope you are getting answers?
Just a bit of an update. After two years of no help, I finally got confirmation that my symptoms do correspond with orthostatic intolerance from an unexpected source ... my endocrinologist! Even though we haven't found an endocrine cause, she is a really switched on doctor who knows a bit about everything. For example, she's heard of OI, POTS, dysautonomia, etc. (amazing) and knew straight away (or found out) where to refer me.
I am waiting now to see the specialist (the only one listed in Australia!), and working my way through the recommended interventions for OI in the meantime, e.g. increasing salt and fluid intake, wearing abdominal compression garments, dividing up meals into smaller, more frequent portions.
My wonderful endocrinologist also started me on fludrocortisone because we strongly suspect I have low blood volume. It's not working yet but I really appreciate how she has tried to help me. GPs have been useless and cardiologists wuss out if you are foolish enough to mention dysautonomia (hint: call it syncope or presyncope instead i.e. stick to describing symptoms).
I still don't have an explanation for the pattern of my symptoms, or why they go away in the late afternoon, but at least now I have a name for them.
There is not a huge amount of info out there on orthostatic intolerance *without* heart or BP symptoms, but I recommend watching YouTube lectures from the following doctors:
Dr Satish Raj
Dr Peter Rowe
Dr Nick Gall
They often touch on OI when covering POTS.
The Ehlers-Danlos Society have many excellent videos that cover POTS and OI and are of interest to all, not just those with EDS.
Also, there is interesting research on identifying new OI syndromes by Dr Peter Novak. He calls these "POTS without the T".
By the way, because my symptoms worsen about an hour after meals, for a long time I thought that I might have reactive hypoglycemia (RH). In the end I ruled that out by purchasing a blood sugar meter.
However, it is interesting to note that orthostatic intolerance, postprandial abdominal bood pooling, low blood volume, POTS and RH have a recommended intervention in common: reducing high carbohydate foods and dividing meals up into smaller portions e.g. six small meals per day rather than three main ones.
Well, I finally found out what is wrong with me. I have a condition called OCHOS, or orthostatic cerebral hypoperfusion syndrome.
It means that when you are upright the blood flow to your head and brain falls abnormally. It is measured as cerebral blood flow velocity using a transcranial Doppler ultrasound.
Healthy people may have a small reduction in cerebral blood flow of say 5% during tilt table testing.
People with OCHOS have a reduction of around 20%.
As it is a syndrome, there probably isn’t one single cause. In my case, it’s an unidentified and probably unknown auto-immune or auto-inflammatory disease causing my cerebral arteries to constrict. Those with abnormal vasoconstriction tend to have high blood pressure.
For other people, it could be low blood volume or poor venous return / blood pooling in lower body. This group tends to have low blood pressure.
My daily pattern of symptoms remains unexplained, although I have found research showing that some auto-immune and auto-inflammatory diseases have marked daily patterns. of inflammation markers in the blood.
In the cases of vasoconstriction like mine, treatment is via calcium-channel blockers or ACE inhibitors to dilate the arteries. It is working, but I have to try various ones because I had trouble with side effects on the first one.
In people with the low blood pressure version, treatment is via volume expansion, compression leggings, and medications to raise blood pressure and increase vasoconstriction as appropriate.
So that’s my story! I am still to see a rheumatologist who may prescribe immunosuppressive medication, which I found out works (by chance), hence the auto-immune supposition. Or I may just continue with CCBs or ACE inhibitors.
OCHOS is not the only example of cerebral hypoperfusion with orthostatic intolerance symptoms. It has also been found in CFS and Long COVID, although I don’t think anyone has explored treatment yet. The Health Rising website has good articles covering this topic.
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