Perpetual exhaustion and fogginess co... - Pernicious Anaemi...

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Perpetual exhaustion and fogginess continue to affect my entire life

zheshi14 profile image
13 Replies

For starters, I have NOT been diagnosed with pernicious anaemia or B12 deficiency. I have had my B12 serum levels tested on multiple occasions over the years, and the serum levels are always slightly elevated, even without taking any B12 supplements at all. For a while, I was convinced B12 malabsorption was the source of my problems, but after trying (at different times) methylated B12 sublinguals, getting 4 injections over the course of 4 weeks, as well as recently trying methyl B12 complex, I doubt this is my issue, but for some reason can't let it go. Here is my background:

When I was 16 (23 now), I noticed one morning I was a little tired for some reason. I have been perpetually fatigued ever since then. Not even a second of feeling well again. I've gradually gotten tireder and tireder over the course of the past 7-8 years, to the point where I'm at now where I can hardly function because the exhaustion/fogginess and resulting symptoms have become so debilitating. So basically, my life revolves around me being exhausted, something that is very difficult to ignore/skate around.

*Many of the symptoms below have been here since the fatigue/fogginess started, BUT have very gradually gotten worse and worse as time goes by.

SYMPTOMS:

· Chronic fatigue/fogginess 24/7. Used to be more of a mental fatigue/burned out feeling rather than a sleepy feeling, but has gradually escalated to both.

· Non-restorative sleep. I'll wake up to pee in the middle of the night and don't even feel like I'm in real life I'm so out of it. Can barely walk straight correctly to the bathroom. I tend to feel a teeny bit better if I can get 9+ hours of sleep though.

· Energy bursts are now non-existent.

· Disassociation feeling that has gradually emerged

· Drugged/drunk-like type feeling 24/7, especially as day progresses. Like I'm not quite in real life. Never fully feel "there"

· Cognitive decline/impairment (Concentration, alertness, memory, focus, processing/recalling/stumbling over words and sentences, confusion, etc.)

· Motor skills/coordination decline

· Lightheaded upon standing often

· Low arousal (jump scares, loud noises, etc have gradually affected me less and less as time has gone by).

· Feel anxious/stressed/overwhelmed more easily.

· Everything feels like a chore, like an ordeal I get to check off. Even if it is something extremely minor or something fun.

· Decision making is poor, even for relatively minor things.

· Hypersomnia (Usually fall asleep very easily, rarely have insomnia)

· Eye floaters + Light sensitivity (seem more sensitive to bright light/sunlight)

· Numbness all over body. Tough to explain, but extremities/body parts feel so utterly exhausted and numb-like to the touch. Like I can feel my arm getting touched by my hand, but can’t feel my hand touching my arm.

· Senses feel dulled. Hearing, taste, smell, touch, all feel weakened and suppressed.

· Libido low. Orgasm feels much less intense.

· Alcohol usually hits me much harder now. As a result, I feel intoxicated more easily/quickly. Sometimes 1 beer and I'm already feeling drunk.

· Slow now both mentally and physically.

· Head almost always feels very tired and heavy, but I don't get headaches that often.

· Anhedonia and apathy as I’ve gotten tireder and tireder. I have gradually become indifferent to most things. I literally come across as an emotionless zombie now because I am so damn exhausted 24/7. Almost nothing phases or interests me anymore. I am emotionally flat lined.

· Perfectionist/high standards kind of person. High IQ, high expectations for myself. I also tend to internalize often.

· All of these symptoms seem to flare up more when I’m sick, stressed, get less sleep, etc.

· Never really have had any hobbies or passions as a result of losing interest quickly and being too tired/unable to focus.

· Stuff constantly coming to me to look up/check/remember/do, etc.

· For the longest time, used anxiety/worry/fear/forgetting things/ to cope and get stuff done

· Never been good with just falling asleep/napping like others

· Feel like I need lots of sleep to “recover”.

ADDITIONAL INFO:

I've had virtually any and all medical tests done, everything comes back perfect. Tried so so many different types of medications, supplements, and nootropics. Diet changes, exercise changes, etc.

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 and worse over time. 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 hidden 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 out of it, it's embarrassing. I come across like an intoxicated zombie, especially at night.

To wrap up, realistically I think it is the result of a cumulative combination of:

1. Generalized anxiety that maybe I didn’t/don’t realize is anxiety. Maybe a bit of a de-realization + “accustomness” in feeling like this for so long. I’ve always felt my anxiety was more about behavioral responses and wearing myself out.

2. Undiagnosed ADD possibly (just recently started Adderall which seems to help a tiny bit).

3. Personality characteristics that definitely don’t help (Type A personality, perfectionist tendencies, high achiever/expectations, strong moral compass, tend to worry more than I should, too hard on myself, overwhelmed/stressed, etc.)

4. Possibly a bit of depression as a result of how much this has impacted my life. Relationships fading cause I couldn’t function. Hobbies/interests lacking due to fatigue as well as having to spend all day having to use coping mechanisms to make up for my symptoms, etc.

But even when I feel I have addressed the aforementioned issues, I still feel awful, which keeps me coming back to maybe it's a physical issue.

Any advice? Assurance this is not a B12 issue?

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zheshi14
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13 Replies
fbirder profile image
fbirder

It doesn't sound like B12, but to rule it out for certain I would have an MMA and, if possible, hCys test. Methylmalonic acid and homocysteine are two chemicals used up in reactions mediated by B12. If there is insufficient B12 getting into the cells then they don't get used up and levels in the blood are raised.

What you describe does sound similar to a friend of mine. Although she suffered from bipolar so the exhausted, depressed, symptoms alternated with manic phases. She finally got things sorted after seeing a psychiatrist who decided that it was partly psychological and partly physiological. She started experimenting with a cocktail of various drugs and has, for the last five years or so, been incredibly better.

zheshi14 profile image
zheshi14 in reply tofbirder

I also am highly doubtful it’s related to B12 for a variety of reasons, however I don’t want to skip over something so easily fixable, you know? Plus it can’t hurt to add some B12.

Assuming it is in fact psychologically related, I’m just not sure what to do. Medications haven’t helped, therapy did virtually nothing to ease symptoms, activities, etc. I’m sort of stuck...

EllieMayNot profile image
EllieMayNot

Perhaps some sort of thyroid disorder? What the general medical community considers "normal" in terms of thyroid hormones isn't always optimal or even functional. There is a Thyroid UK forum here on HealthUnlocked. If you have your test results for your thyroid hormones, there are a lot of very educated individuals who will be able to offer insight based on your most recent levels as well as knowing if further thyroid testing might benefit you.

healthunlocked.com/thyroiduk

Whatever the underlying issue, I hope you find real answers and real relief!

Nackapan profile image
Nackapan

Have you had autonomic testing ?. You mentioned getting up from sitting making you light headed. I hope you carry on getting tests for physical and mental health.

Sleepybunny profile image
Sleepybunny

Hi,

It's possible to have symptoms of B12 deficiency with normal range B12.

Some on this forum have been diagnosed with Functional B12 deficiency;where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

B12 deficiency can have a profound effect on mental health.

b12deficiency.info/b12-and-...

I am not medically trained. More B12 info in pinned posts on this forum.

zheshi14 profile image
zheshi14 in reply toSleepybunny

Thank you for the reply.

I have heard of people having B12 absorption issues while at the same time having “normal” or high levels of B12 in blood serum. But I’m a bit confused regarding this. I’m also not very knowledgeable when it comes to this. But if there is normal levels of B12 in blood, doesn’t that mean it’s actively in the body?

Galixie profile image
Galixie

You mentioned that your B12 results are always slightly elevated. An elevated level when *not supplementing* should be taken seriously by a doctor. After your B12 came back elevated, were additional tests run?

Have you looked at any of the chronic fatigue forums such as phoenix rising (forums.phoenixrising.me/)? You might find additional avenues to research and rule out.

wedgewood profile image
wedgewood

It sounds a bit like M.E. or C.F.S .( Myalgic Encephalomyelitis or Chronic Fatigue Syndrome)

You could try reading a book that Dr Sarah Myhill has written on the subject. Obtainable on Amazon — Diagnosis and treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis — it’s Mitochondria, not Hypochondria . £13.18 . Or Kindle edition £4.74

That is the area of medicine that she has concentrated on , after giving up General Practice . I really think that it would be a worthwhile read for you . Very best wishes to you .

5576 profile image
5576

Would be worth having Vit D tested as well if you haven’t already x

Cartimo360 profile image
Cartimo360

Have you been tested for POTS ?

Judithdalston profile image
Judithdalston

Just to say that for some ailments within range blood tests might not be good enough eg for hypothyroidism TSH, and accompanying ferritin, folate, vit D and B12. Have you actually got test results rather just be told they are ‘normal’ or as you say ‘perfect’?

dogmama2 profile image
dogmama2

I would also encourage you to have autonomic testing done. I have POTS and your symptoms sound very similar to mine in the beginning. I would also suggest a vitamin D and thyroid test, like the others mentioned, as well as ferritin.

crw2ddd profile image
crw2ddd

I had those symptoms for a while in addition to have an irritable bowel in the morning. I was found to actually have hashimotos thyroiditis. If they had done a comprehensive thyroid test much earlier they probably would have found it before my TSH shot up to over 100. I just had my TSH tested for years before diagnosis. But in actuality you need FreeT4 Free T3 and TPO and TG antibodies in addition to ferritin B12 folate and vitamin D. If you post your results on the ThyroidUK pages with ranges they will advise you. Many many people go undiagnosed for a long time needlessly.

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