Severe fatigue and brain fog destroyi... - Pernicious Anaemi...

Pernicious Anaemia Society
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Severe fatigue and brain fog destroying my life!

Hello friends,

I have been dealing with these same issues for far too long! Little long, but here goes:

Starting when I was 16, I woke up one day and noticed I was a little tired for some odd reason. I have been tired ever since that day. I am currently a 23 year old otherwise healthy male. Not even a day or a minute of feeling well again. I've gradually gotten tireder and tireder over the course of the past 6-7 years, to the point where I'm at now where I can hardly function because the exhaustion and resulting symptoms have become so debilitating. All of the symptoms seem to match sleep deprivation but I have been using a CPAP machine for very mild mixed sleep apnea (AHI of about 6.5) for a few months with no change in energy. Although the CPAP has gotten rid of my bad night sweats that I previously experienced nearly every night. So basically, my life revolves around me being exhausted. Most of the symptoms below have gradually gotten worse and worse as time goes by.

Overall, it feels like I was hit by a truck. From the moment I wake up to the moment I pass out from sheer exhaustion at night. Everything feels like it's suppressed by this fog that has gradually gotten worse. For example, caffeine’s effect, sex drive, post-workout adrenaline and endorphins, getting plenty of sleep, etc. I can sort of FEEL all these things for the most part, but it feels suppressed and pushed down from this utter exhaustion. It’s like nothing can surpass the fatigue and fog. It's gotten to the point where I feel like I'm living my life from the backseat and am just going through the day mindlessly. And the thing that sucks is that I WANT to do things and live life, and am still pretty optimistic, but I'm just too fucking out of it, it's embarrassing.

SYMPTOMS:

•Chronic fatigue that has very gradually gotten worse and worse over 7-8 year time span. Never a moment of feeling better. Used to be more of a fatigue feeling, now it's escalated to bad fatigue plus intense sleepiness

• I now feel drugged/hungover 24/7.

•Absolutely zero energy now

•Cognitive decline (EX: concentration, alertness, memory, focus, BRAIN FOG, processing/recalling words, etc. Like it’s gotten to the point where I have to often plan what I’m going to say in advance and make sure I get each and every word right.

•Decision making is awful

•Coordination/balance feels out of wack like I'm drunk at times

•Motor skills, hand-eye coordination, spatial awareness have declined sharply.

•Feel like I move extremely slow now both mentally and physically

•Dizziness upon standing often

•Extremities/body parts feel so utterly exhausted and numb-like to the touch. Gradual decline as well.

•Head almost always feels very tired and heavy

•Consistent yawning throughout the day

•I feel more anxious/stressed easily, where everything feels like a chore

•Feel intoxicated MUCH more easily/quickly. It's been a gradual decline as well

•Have a perpetual drunk-like feeling like I'm not quite in real life. Never fully feel "there"

•Lower libido

•Night sweats often

•I fall asleep very easily most nights

•Sensitive to sunlight/bright light. Also get eye floaters

•I literally feel awkward and dumb now because I am SO fucking out of it and I'm sure others have noticed.

TESTS I'VE HAD DONE:

Blood panels tests, urinary tests, vitamin/mineral deficiency checks, hormones, heart scan, chest scans, head MRI, cortisol AM and PM levels, HIV, hepatitis, celiac, anemia, food allergy testing, full thyroid testing, antibodies, h. pylori, ENT doctor to rule out any structural issues. As mentioned on here many times, YES I have had my magnesium, Vitamin D, Vitamin B12 serum, testosterone, calcium, iron, glucose, folic acid levels thoroughly checked numerous times, and basically anything else that could pop up as a result of testing

THINGS I'VE DONE/TRIED:

Currently on my fourth anti-anxiety/depressant Prozac (really don't think this is the issue, but I'm low on options now), Modafinil, Adderall, kratom, CBD, a few months using a CPAP machine for very mild mixed sleep apnea, methylated B12, methylated folate, more sunlight/sports, not masturbating, more caffeine/no caffeine, glucose tablets, quality dark chocolate, antihistamines, diet changes, more exercise/less exercise, therapy, meditation and deep breathing exercises, spiritual healing, sleeping elevated, taping my mouth closed when I sleep, naturopathic docs, and SO MANY damn supplements including kava kava, chamomile, 5-HTP, ashwagandha, magnesium, melatonin, fish oil, vitamin D3, etc.

ADDITIONAL INFO:

I find it kind of weird that strong stuff like Adderall, Modafinil, kratom, CBD gummies, caffeine, or antidepressants make virtually no difference in me, no matter the dosage (not taken all at once). Some of this stuff sometimes makes me feel a little anxious/on edge, but that's about it. Exercise doesn't really seem to affect me one or another, I do not suffer from insomnia (in fact I fall asleep very easily most nights), I have not been exposed to toxic mold (lived in 5 different places since this started), my diet is extremely healthy, appetite is good, I do not have any joint pain, never had surgery, stay very well hydrated, my childhood and family life are extremely well, I have slightly elevated CO2 levels in my blood (but nothing dangerous), slightly elevated bilirubin levels, slightly elevated B12 serum levels, and slightly elevated ferritin levels. I might be missing a couple things but this is pretty much the jist of it.

Does this sound like possibly a B12 malabsorption issue? I know that this is a Pernicious Anaemia group, so I'm sure people are going to say YES!, but please share your thoughts. I hate feeling like this everyday and watching my life fly by me.

18 Replies
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Sometimes test results are borderline low/high although they are in range. This is especially true for things like B12 and other vitamins/minerals. It seems like there is less than optimal oxygen supply to your body (constant yawning and sleepiness). What were your MCV, MCH, RDW levels. Also did you get tested for B12 after/during supplementing with B12. Because testing B12 after oral supplements would show raised B12 levels even though you might have PA symptoms.

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You say you have "mixed" sleep apnoea. I was first diagnosed with that & put on a CPAP which made it so much worse & my AHI's averaged 80 times per hour.

I then had to use an ASV machine instead of a CPAP.

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Yes, mixed. More central hypopneas than obstructive.

Did the ASV help? What was your AHI to begin with? Obstructive sleep apnea?

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Yes the ASV really helped as I was told CPAP makes central worse.

80 times per hr on CPAP down to around 5 on ASV.

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Could it be a B12 absorption problem? Yes.

Is it a B12 absorption problem? Impossible to say.

You say you've tried B12 supplements. Pills or injections? For how long? What were your B12 levels? Before and after starting supplements?

If pills have increased your serum B12 significantly then it's not a B12 absorption problem.

That's not to say it isn't a B12 problem. To tell that for sure you would want to test levels of methylmalonic acid and homocysteine. These are two chemicals used up in reactions mediated by B12. If there is a problem with the vitamin getting to the places it's needed then the levels of these two chemical will be increased.

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I've tried regular B12 and B-complex supplements, I've tried methylated sublingual B12 tablets, and I have gotten a shot on two separate occasions, one of them being today. The other one was about 4 months ago. Don't feel any different after the shot today...

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zheshi14 Out of your very many symptoms you mention I am struck by those relating to extreme fatigue and exhaustion in excess of what people with Chronic Fatigue Syndrome normally describe. You also mention cognitive symptoms which seem almost stroke-like except that yours do not resolve. Difficulty breathing too.

I can personally relate to this. My physical symptoms got to a stage where I would go into periodic paralysis. I later discovered this improved in so many important way when I took potassium (and perhaps phosphate too) although they were showing up as normal on repeated blood tests. B12 very markedly worsens the symptoms (although B12 may just be revealing something caused elsewhere in my body) even though this can't be due to just a transient increase in B12-induced RBC synthesis as I have had severe symptoms for 1 or 2 years.

I'm most definitely NOT saying what I found for myself is also your cause but it shows how carefully you may have to check and double check previous tests in case something was overlooked.

Psychotropic meds, such as your Prozac, can cause a very wide range of adverse effects in some people, so I steered clear of these after having been prescribed them with no benefit over the years.

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Interesting. My potassium levels are good. Could there be an issue with potassium malabsorption? Is that thing?

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zheshi14

My response to potassium and phosphate puzzles me. My potassium tests are low-normal but I believe the serum tests does not measure "active" potassium within the cells.

Everyone tells me I shouldn't be supplementing potassium or phosphate as it is potentially dangerous and yet these are both exceptionally good at correcting many of my long-lasting and most disabling symptoms. I need to get all this looked at by a specialist to get an explanation.

I can' t believe I have both an undiagnosed B12 problem and also an undiagnosed electrolyte problem. My amateur guess is the B12 problem is the main one and causes the other problems but who knows.

You appear to have looked at everything on your medical journey but do not mention organic acids, raised ammonia, lactate or B12 which are areas I am considering. Of course, it's not possible for me to say if they are relevant to you.

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Cetus

Yeah, i agree.

I highly highly doubt you have both a B12 issue AND an electrolyte issue. Seems highly improbable, but again, still possible.

I got a B12 injection yesterday afternoon. I've only ever gotten one other one my entire life a few months back. If I do have a B12 problem, would I already instantly feel better/different? Or does it normally take weeks/months of treatment to feel better?

Also, I started Vyvanse today. So far out of everything I have tried I notice the biggest difference with this.

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Oh man, do I feel for you. It does sound like some sort of anemia, but that would have been found in tests. Then again, I have pernicious anemia, confirmed by intrinsic factor antibody test, and yet anemia never showed up in my labs. I did not have fatigue like yours though. The only way I discovered my B12 problem was getting huge doses in an IV and then feeling better. The one time I have felt such overwhelming fatigue as yours, I was being treated for hyperthyroidism and I took too much medication which suppressed my thyroid and I could barely move for days... Discovering the thyroid issue (a hot nodule) took a long time because my TSH came back just barely inside the "normal" range until my symptoms got very bad. So blood labs can make it seem like you don't have a thyroid issue when you really do. Still, if not anemia, and not thyroid issue, then chronic fatigue syndrome seems a possibility, and I am not sure what that entails, or what helps. I do wish you luck in finding an answer, it took me four demoralizing years to find mine --

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I guess I need to get tested for the intrinsic factor. Do you know if that's a common test that is readily available?

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It is common, but you have to convince your doctor to order it. I had a doctor willing even though I didn't have any low B12 lab results, just my experience of B12 making a difference for my neurological symptoms. I still don't understand exactly why my brain and nerve symptoms could be so severe and I did not get anemia and all that fatigue that comes with it. But there it is.... As I understand it though, not everyone with pernicious anemia tests positive for IFA. I've read ranges of anywhere between 30% to 50% of people with definite PA come up negative for Intrinsic Factor Antibodies. But false positives are very rare, so to have a positive test is pretty much definitive.

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If possible, I would recommend that you read, 'Pernicious Anaemia, The Forgotten Disease' by Martin Hooper. Many of the symptoms you have mentioned are covered in this book. You can buy it on Ebay, or better still, order it from your library to save costs. He writes about the 'fogs' and 'the strange exhaustion' and 'the yawns' amongst many other symptoms. It may help, I really hope it does. I hope you find your answer soon and get some proper help and stop suffering like this. Best wishes.

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This sounds so familiar. It’s my life but fortunately for me mine is episodic, comes on out of the blue and leaves me drained. Lasts for months then I feel I’m getting better and back I go. Not related to mood etc and I’ve missed out on a lot of stuff due to physically being unable to go.

I have Menieres Disease and find I have same drained feelings after attacks but other times no links.

I too have had many tests . I asked for copies of results and I found that my thyroxine levels fluctuate a lot and so I’ve increased my iodine intake by taking kelp supplement. This can make me a little too edgy so I take supplement as soon as I feel my energy dip.

I can’t get doctors to prescribe thyroxine and can’t afford to buy it privately so I’m doing what I can.

I am now experiencing muscle weakness in all four limbs but Neurologists haven’t found cause. I’m thinking it’s all part of same thing but ...

So frustrating and annoying when you can’t get anywhere with the medics.

Try asking for thyroid test first then keep going back until you get an answer.

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Just one out of the box thought incase it's none of the above - did you have any vaccinations before this trouble started?

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You must MUST have your thyroid tested?

TSH, Ft4 , Ft3 .

And thyroid antibodies tested.

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Am so sorry to hear what you are experiencing & what is happening to you.

I have had hypothyroidism for years and more recently developed B12 deficiency. Mine is all autoimmune as a result of another condition.

Its really important that you get actual copies of all results and dont rely on the doctors just saying its fine cos in range. Ranges in blood tests can be wide and you maybe in range but low. Many doctors dont understand this.

I was diagnosed with CFS but actually I was suffering with hypothyroidism but my bloods were low but in range. The TSH blood tests demands patients to have a very high level before they will do anything -the effect of waiting for this to happen is that many people can be very ill for years. Currently the level is set at over 10 -it used to be 5.8. So you can imagine there are a lot of people feeling dreadful being told they are 'fine'

I suggest you start your own log:gathering copies of all your blood test results, alongside notes on your symptoms and signs plus any treatments or supplements you are taking, all dated. So for my thyroid my symptoms & signs were extreme fatigue, dry skin, dry eyes, blood pressue rising, constipation, hearing diffculties, blurred vision from dry eyes, hair loss, weight gain, puffy face (eventually moon face classic of hypothyroidism). Low temperature, low pulse rate (last two measured first thing in the morning on waking), mild anemia. Hypothyroidism can lower B12 and lower iron level too.

For you I wouldnt try to separate out the signs and symptoms into which potential conditon it could be but just list them. And then compare the signs and symptoms with those listed for either B12 deficiency and hypothyroidism A pattern will evolve. The blood tests will help.

On the thyroid front make sure not only your TSH, Ft4 & if poss your Ft3 is tested but also you are assessed for antibodies -TgAB & TPOAb & if poss Trab. Your GP can do these tests. If not Blue Horizon can do them.

Keeping a log is a great resource to look back on. What isnt clear at the time becomes clearere when you can refer back. Including what supplments etc you are taking and how you respond will also help. Being methidical will win thriugh in the end. Its a case of the hare and the tortoise.....the tortoise wins!

Am not so knowledgeable on B12 but if its any help my blood test when not on supplements showed low but in range with a result of 275. However I had many symptoms of B12 deficiency including neurological symptoms, horrendous increasing weakness/tremors etc that did not respond to high b12 supplements but did respond with daily B12 injections. My intrinsic factor test was negative (it only picks up 50% in any case!)

The truth is 10min GP appointments do not give GPs time to unravel chronic conditions unless they are obvious so they will run on standard lab tests, and anti depressants are their go to meds if everything is in range. You could try private. I did this and had an hour consultation! Very helpful! It gave me the confidence to do the B12 jabs. Later on a NHS neurologist supported me in my decision so they are now on the NHS. I still inject B12 alternate days. my GP was amazed at the difference in my physical condition that the b12 jabs did. One off jabs may not be enough & arent for me.

Above all dont give up! Keep coming on healthunlock post to either Thyroid Uk or PA or both. There are some really knowledgeable people on both sites who can really help.

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