Life is a living hell, crippling fati... - Pernicious Anaemi...

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Life is a living hell, crippling fatigue and brain fog

23, Male, Caucasian, 5'10, 165 lbs

Hello all,

I'm sure many of you can relate to my story so here goes.

My health has felt like it’s been in the crapper for way too long. When I was 12-13 I was diagnosed with mild GERD (acid reflux). It affected my sleep a little bit from what I remember, but not hugely. Right around this time I also started developing a bit of general anxiety, but again wasn't debilitating. And then, starting around age 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. Not even a day or a minute 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 and resulting symptoms have become so debilitating. So basically, my life revolves around me being exhausted. Most of the symptoms below have gradually gotten worse and worse as time goes by.

SYMPTOMS:

· Chronic fatigue that has gradually gotten worse and worse over 7-8 year time span. Never a moment of feeling better. It's to the point where I'm at now where I can hardly function because the exhaustion and resulting symptoms have become so debilitating. So basically, my life revolves around me being exhausted. Used to be more of a fatigue feeling, now it's escalated to bad fatigue plus sleepiness

· 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.

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

· Dizzy upon standing often

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

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

· 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

· Dry mouth often. Also increased thirst a bit

· 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 sex drive

Very slight head/neck jerks recently

· Night sweats (have subsided since using CPAP)

· I fall asleep very easily most nights

I do feel slightly better when I wake up as opposed to before I go to sleep, but I suppose that's like everyone

· Acid reflux history, now just minor, off and on (largely subsided)

· Somewhat sensitive to sunlight/bright light. Also get eye floaters

· Not sure if this means much, but the moons on my fingernails are very small/nonexistent

· When I started feeling bad, I noticed I used to be a lot more on edge. So I would get startled and jump easily, got pissed off and agitated easily, stressed/anxious easier, and had no patience for anything. So that spiked for a while, but as I got tireder and tireder most of this stuff went away to the point where I'm a zombie now and don't react to anything.

I have had practically every sort of test done. Blood tests, urinary tests, vitamin/mineral deficiency checks, heart and chest scans, cortisol levels checked. Everything comes back PERFECT and just about everything has been ruled out it seems. I have tried for the hell of it multiple anti-anxiety/anti-depression medications, none of which helped me in the slightest. My diet is healthy, I still try to exercise most days of the week (although it's gotten harder to due to my shear exhaustion). Exercise does not make me feel better or worse. I do not suffer from insomnia. I do not have ADD/ADHD. I do not suffer from any joint pain or any real pain for that matter. I average 7-9 hours of sleep a night and usually fall asleep very easily, although I do usually wake up 1-2 times a night to pee. I stay very hydrated throughout the day.I do not get sick that often, maybe two colds a year, never had mono.

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. I was recently diagnosed with mild sleep apnea (mostly central sleep apnea, not obstructive) and have been using a CPAP machine for a couple months now (haven't noticed a difference yet). I also started using Nuvigil last week to see if that could help with the tiredness but nope, nothing. I also even had an extensive food intolerance test done and am mostly sensitive to kidney beans (rarely eat them though). Every other sensitivity is very mild (barley, cherries, halibut, mushrooms) or nonexistent.

Things I've had done/been tested for:

Blood vitamin/Mineral deficiencies

Magnesium levels

Calcium check

Iron levels (I have slightly elevated ferritin)

Heart and chest scans

Cortisol levels AM & PM

Urinary analysis testing

TONS of blood tests

3 different anti anxiety and antidepressants just for the hell of it

Food allergy testing

Changing diet (Keto, gluten free, dairy free)

h. pylori

Lyme

Mercury/lead poisoning, toxic metals

Testosterone levels

Thyroid panels

Candida

Antibodies

More exercise, less exercise. Don’t feel much different either way really.

More caffeine, no caffeine

******Everything comes back negative. The only things that have come back positive is mild sleep apnea (mostly central sleep apnea (CSA), not obstructive sleep apnea. Been using CPAP for a couple months with no noticeable difference in energy yet. Also just started using Armodadinil (Nuvigil) today. I also have slightly elevated Vitamin B12 and ferritin levels. Not sure if that means anything though. So currently what I am doing/taking is:

Continuing CPAP

Started taking methylated B12 and folate about 6 days ago to see if maybe the problem is with B12 absorption. Has actually maybe made me feel a bit worse

Armodafinil (notice virtually no difference no matter the dosage)

Vitamin D3, Omega-3 fish oil, stopped taking multivitamin last week

Trying to at least exercise a bit, keep a healthy diet.

Have an appointment next week with ENT doctor to rule out anything structurally related

Try yet another anti-depressant/anxiety if nothing else works.

I think I've done pretty much everything short of getting a brain scan, stool sample, or spinal tap, all of which seem kind of unnecessary and "out there" but who knows.

Any advice/thoughts? What first comes to mind? I am extremely desperate and at my wits end with this shit...

27 Replies
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I just wanted to say that I was extremely moved by your post, it is just beyond awful that you are suffering like this. There are some wonderful experts on here and i am sure they will give you great advice. I am not medically trained in the least but all I can say is that I am diagnosed with M.E because of the endless, crushing fatigue and have had many similar symptoms.I also now believe I have PA because one of my blood tests said enlarged red blood cells and i have vitiligo and was a vegetarian for years and had teeth out under nitrous oxide. Oddly, I also have no moons on my nails and ridges. I wish I could help more but I know other people will. I can only send a ton of empathy and best wishes.

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Thanks for the kind words. Sorry to hear you are going through a similar ordeal.

Not sure if the no moons holds much merit, but thought I'd mention it.

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Sounds like utter misery. Autonomic testing spinal cord mri?? Blood pressure monitoring 24hrs if dizzy when standing. If the anti depressants not helping have a 'drug holiday" keep working through the deletion list. Is your b13 elevated from supplements or injections? Has it ever been low? I hope the quest for health has a good outcome for you and you get to know what the problem is. Keep recording and hopefully you will find a medic that shows interest and can put the jigsaw puzzle together.

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I am looking into getting a brain scan and a possible spinal check.

I have no clue why my B12 was elevated. I didn't take any B-12 supplements at the time. According to the 2 separate tests, it's been slightly elevated both times.

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Hi Zheshi are you in the U.K?

You say that after supplementing with "methylated B12 and folate about 6 days ago to see if maybe the problem is with B12 absorption. Has actually maybe made me feel a bit worse"

Strange as it may sound it is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Do you know what your B12 level was when tested?

Were you tested for "Intrinsic Factor Antibodies" (IFA)?

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

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Hello clivealive, I am in the U.S.

I have heard about the "worse before better" while talking with others. Hopefully it's true in my case cause I do feel noticeably worse this week. Like I mentioned, I've had some form of tiredness for about 7-8 years now, so quite a while, but not nearly as long as some other people. I don't have the numbers with me now, but will get back to you on that.

I have not been tested for IFA. Is that easy to get?

Thanks for the input.

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Not sure about in the U.S.A. but in the U.K a general doctor can order the I.F.A test on the National Health.

Have a look at this video of one of your fellow countrywomen.

Goodnight from the U.K.

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Hello Zheshi, I am so sorry for what you are going through. I am in the same boat as all my tests came back negative for PA but my symptoms sound like I have some sort of b12 dysfunction since i have hashimoto's. I am weak, shaky, dizzy ,off balance and have gi problems as well and also terrible muscle and skeletal pain since i fell off my bike in March of 2018 and it has not healed. I have been tested for lyme which was negative also but have been told that lyme tests are very inaccurate. There is supposed to be a good one in California by Igenex which is supposed to be the best one as lyme is the great imitator as we all know. I am thinking of trying it also but i hear it is expensive and insurance does not cover it. I am currently self injecting b12 every other day to see if this is my problem as all my tests come back negative. As e66 said, there are a lot of smart people on here that can help you. Good luck in your journey and I hope I was of some help. I am in bed most of the day also due to weakness and balance issues. I am not medically trained but have been through the ringer for the last 2 years. I hope and pray that we all get better. Just hang in there, maybe start getting the b12 injections and see what happens. They say on here that it takes a couple of months to notice a difference.

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Sorry to hear you are going through something similar. It truly is awful. I have pretty much ruled out Lyme in case, but maybe it's the answer for you.

I will continue with the B12 supplements and see if I notice a difference. I'm really hoping so...

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Hello Zeshi, Unfortunately all my tests were negative like yours so I am just shooting in the dark hoping the b12 will solve my issue. I have had 14 injections so far but not feeling any difference yet. I do hope you get help on this forum and move on to better health.

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Hi, many of your symptoms sound exactly like what I suffered from for years. Doctors could not figure it out, all they did was give names for my symptoms: disc bulges, erythromelalgia, POTS, SFN, neuromas in my feet, pernicious anemia, chronic fatigue, and more. Had lots and lots of tests, including MRIs, CAT scan, etc. Not much turned up except the PA and a hematologist thought I might have porphyria. It turned out that I had Lyme disease, diagnosed with the help of a friend through social media (I'd had it for at least ten years). I found a Lyme literate doctor (had to go outside the medical/insurance system to find one). She's been treating me for nearly two years and I'm getting better.

Please research Lyme disease as a real possibility. Typically it is accompanied by several co-infections that cause additional symptoms. My horrible foot pain was caused by Bartonella. My POTS, shortness of breath, and sleep problems (I often woke gasping for air) was caused by Babesia. Traditional medicine is very ignorant of Lyme, largely because of the underlying politics. Not everyone gets a bull's eye rash, I didn't. The ELISA test most doctors rely on is crap. I had that test twice, once at my HMO and again at Mayo Clinic a year later, both were negative so Lyme was ruled out and I suffered several more years. You'll need to seek out a Lyme literate doctor who can run more sensitive tests like IGeneX (US) or Armin (Germany).

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Yes, I had the ELISA test. Came back negative. Will definitely look more into it though. Glad to hear you are feeling much better! Thank you for the reply.

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You will need to find a Lyme literate doctor (LLMD) to order testing such as IGeneX. My GP refused when I asked her. Main reason was she consulted the infectious diseases doctor on their staff, and ID docs are the worst for dealing with Lyme (do some research and you'll learn this). When she told me she'd talked to the ID doc I knew I absolutely had to find an LLMD.

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I tested things in part by getting a b12 shot. They are easy to find if you live in or near a larger city in the US. One of the places I have lunch at has a lady who comes once a week to give b12 shots for $20 a jab. Pretty cheap and easy way to see if b12 is the issue. I think that if you have any reaction it means there is something b12 related going on. If you don’t have a b12 issue then the shot should have no effect. Shots made me feel way worse initially. I couldn’t walk down the hallway in our house without bouncing off the walls repeatedly. So it could be miserable (even more miserable) for a few days/weeks/months until the nerve damage starts repairing and your body adjusts. Only caveat to all this is that some people have written here that it is possible to develop some kind of resistance to b12 if you take high doses. I don’t understand any of that but it seems like it would be an unfortunate outcome. Having said that many people do get shots and they help. I went from useless to 70% functional in 6 months. So if it is b12 related there is a path to feeling much better. And as others will point out b12 alone is not enough - you need folate and other things to repair the damage if you have had b12 related issues all those years. Btw, I am not medically trained so no idea what is causing your problem (or even mine really) but a lot of your symptoms sound exactly like mine. No moons on nails for example - thumbs now have them back. The people on this forum kept me from going to a very dark place when I was initially diagnosed. I will be forever grateful for their kind words and support. Really intelligent, caring and generous people here.

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I have heard the same things about B12 possibly making you feel worse. We'll see. I'm going on only 1 week now, so don't feel any different yet, but will keep you all updated on this!

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Sounds good. Note that if you for some reason require really high b12 blood levels the oral doses may not get you there.

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You mentioned acid reflux- did you take omaprezole or lamaprezole for this condition?

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I briefly took Prilosec

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Really sorry you're suffering in this way.

I haven't read all the other replies yet as I'm running late for something but I will do later.

The one thing I will mention though is your sleep apnoea.

I too was diagnosed with severe "mixed" sleep apnoea in December 2016 where I stopped breathing 80 times per hour per night. I wasn't & am not overweight. Then, after a CPAP made it worse, they said I too had just the "Central" sleep apnoea. (CPAP will make "central" sleep apnoea worse!)

I was taken off the CPAP & put on an ASV machine that did improve it but, the thing is, since my diagnosis of Pernicious Anemia & regular B12 injections, my sleep apnoea has virtually vanished!!

I use a Resmed CS pace-wave ASV & you get a "My-Air" app with it which monitors & records "AHI's" per hour, (similar to how hospital monitor) From 80 times per hour now down to 0.1, 0.2, always under 5.0 since. I've asked at the sleep clinic if my PA & now regular treatment has cured me & is there a link They don't think so but, I'm convinced that there is!! I put my thoughts down to the Macrocytic Anemia I had & lack of oxygen in my blood, made sense to me!?

Good luck.

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Hi there,

So sorry you are struggling at such a young age! I have Fibro, Hashimotos, pernicious anemeia, GERD, TMJD and the list goes on! I will just chuck my 2 cents in an say it is possible you have more than one issue! A lot of what you listed fits “Fibro” but you should also maybe look up Haemachromatosis too. The two conditions have been often confused and may explain iron levels. Just a thought and hope it helps. My 15yr old has had reflux since a baby and now has vit D, iron deficiencies and more recently TMJD. To say I am concerned is an understatement, so I wish you luck and energy and if you need any further help let me know! 🙏🏻

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I suggest you post similarly on the Thyroid UK forum: healthunlocked.com/thyroiduk

However, please include the results (with reference ranges) for at least the thyroid panels you have had.

The reference ranges for thyroid tests are wide and it is perfectly possible for all tests to be in their ranges but nonetheless have a thyroid issue.

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Only thing to add, have you been tested for diabetes? You probably have but good to rule out.

Hoping you feel better soon.

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So sorry to hear you have been progressively getting worse over the last 8 years. When you say the results came back negative is this the Drs stating this? You really need to have all the test results for the last 5 years and if you can request them all blood test results; then I suggest you put them into a spreadsheet to see the results for timelines. It’s sounds arduous to do but trust me I did this for my illness and it helped when getting the drs to listen to me as I could evidence decline over a period of time and also allowed me to note how I felt on various doses. Not sure if your in the UK but being in the bottom range of a test result should not be seen as “within normal parameters”.

Hope this helps.

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Hello did you read The Magnesium Miracle by Carolyn Dean she is a Doctor and helps ppl with fatigue

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I'm sorry you feel that bad and when I read about your story/ symptoms I felt like I was reading about myself. I'm no expert but this site is amazing with really helpful people/advice. I looked at my nails and I have barely any moons either. I had many of the same symptoms before diagnosis, still have some of them. Have they even checked your B12? If so what were the results?

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Your story really resonated with me and my heart goes out to you. I've been on a healing journey myself for many years, going to doctors and healers and incessantly researching to try to figure out why I'm not functioning like I used to. I had a revelation 5 months ago when smart meters went up in our neighborhood and my 5 year old and I had dramatic reactions. This led me to countless hours of research on EMFs after sticking my head in the sand around that issue for years. I now believe this is at the root of all my health issues I've worked so diligently to resolve all these years.

My health especially took a nosedive 10 years ago. I started having migraines, debilitating fatigue, brain fog, skin issues, apathy, etc. which was very unlike my can do, tackle anything life before. I now look back and see that's when I got WiFi and a smart phone.

Now that I've spent every free minute researching this for 5 months, I'm convinced that EMFs are affecting all of us on a cellular level. Some people are more sensitive than others, particularly those with any metal in their bodies--tattoos, fillings, pins from surgery, heavy metal poisoning . . . There are now thousands of peer-reviewed scientific studies showing a direct correlation between the exponential increase in EMFs and the rise in cancer, brain tumors, heart issues, dementia, chronic illness, behavior issues, depression, and anxiety.

It's an extremely complex issue and a steep learning curve, but more and more research is coming out every day. I now have meters to test for all 4 types of EMFs and have consulted with several experts around the US.

Here are a few websites for more info:

lucysanford.com/limitless-s... (Her first video blew me away and describes much of my life on my healing journey.)

emfanalysis.com/about/

mdsafetech.org

lucysanford.com/symptoms-of...

There are many, many more sites, but this will give you an idea.

I'm happy to answer questions anyone may have about this. As 5G rolls out and EMFs continue to increase, we will see many more people becoming sick. There are ways to protect yourself. One of the best things you can do is turn off your WiFi at nights (or better yet, hardwire your computer with an ethernet cable), put your phone in airplane mode especially at night, use speakerphone instead of Bluetooth or holding it to your head, get rid of cordless phones and baby monitors.

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How have you been getting on with your issues lately, have they improved at all?

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