Brain fog, fatigue, and more.
July 9, 2010 3:11 PM   Subscribe

Intense, prolonged brain fog and feeling of awfulness. Have already seen doctor.

I figured I'd give this a shot. I went to my doctor a month ago and he did all the "usual" blood tests and everything is in the normal range. I'm going to go back and tell him I'm still not better. He asked a miliion questions which was great. I'm going to give him the list I made below.

Recently all these things got pretty intense (reason for doctor visit), and that made me realize I've been faintly feeling most of them for years--it made a lot of puzzle pieces fall into place about how these issues have affected me and why I've made certain life choices.

1. Brain fog, feeling stupid, feeling drunk, difficulty finding words, difficulty forming thoughts, difficulty doing my job and following conversations, extra effort to enunciate clearly and words still sometimes slur together, thinking takes effort, pressure in head, eyes don't want to focus. Sometimes people ask if I'm drunk or high. (I don't drink at all. Never really have. No drugs.) Friends haven't noticed a recent change, except that maybe I'm a bit quieter. I do get a funny look when I slur a couple words together or involuntarily mumble.

2. I don't look forward to sleep--it's almost as if sleeping is useless. I fall asleep within twenty minutes and wake up naturally after eight hours but don't feel refreshed at all--I'm spaced out and non-functional for 45 minutes after waking up. By 2pm I'm completely useless. My eyes always feel like they want to close. Girlfriend confirms that I don't snore. I *don't* wake up gasping. I remember my dreams. I seem to sleep through the night. I move around a lot before falling asleep, but that's it. (My Dad is thin and does have central and obstructive sleep apnea though... I'm quite thin too.) I can't really do things at night for fear of being non-functional the next day. When I get home doing anything but sitting around takes a massive, massive act of will. I somehow manage to cook.

3. Slightly achy and sore all the time, feel weak and fatigued, trouble maintaining weight, when lifting weights over time I gain strength slowly and have trouble keeping it. If I'm standing I'm generally leaning against something. Always moving my head and popping the joints in my neck. Neck never feels like it's lined up quite right.

4. Sometimes when I'm just standing around I feel like I'm fainting but never do. I lose vision sometimes when standing up abruptly, but I know that's not uncommon.

5. Always thirsty. Drinking lots of water doesn't seem to do anything. Adding electrolytes to my water doesn't seem to do anything.

6. I have a faint rash on both sides of my waist but not in the middle. Sometimes my ears are itchy but nothing visible. I don't have bags under my eyes, but the inner corners of my eyes are always dark. Tongue looks normal.

7. One good thing: I used to be completely unable to tolerate high and low temperatures, but neither bothers me anymore.

8. Restricted diet but not too weird: I haven't eaten eggs, milk, wheat, or corn for years. Went on a low salicylate diet two weeks ago with maybe a slight benefit. I take a non-generic, hypoallergenic multivitamin. Not vegetarian/vegan.

9. Glands (or whatever they are) on both sides below my jaw always feel swollen.

10. Sometimes, a ghastly, crawly feeling like wanting to claw out of my skin. Sometimes a tendency to breath hold. I never feel particularly panicked, though. Heart rate doesn't go up, breathing generally slow and deep.

11. Ventilation in my apartment isn't that great, but wooden floors and a HEPA air filter.

12. I was in therapy on and off for a couple years. *Mild* anxiety, never depressed, don't feel depressed now. Still experience joy, interest, etc. Life situation not awesome but fine. Have friends, family, and interests. This is not psychological. (I have experienced prolonged, intense stress in my life, though.)

13. My sleep hygiene is pretty awesome. White noise, very dark, room temp is cool, usually sleep alone.

14. I did find some sort of tick creature (half the size of a dime) on me many, many years ago. After much flicking with my finger, it finally let go.

15. Sometimes my girlfriend says my skin is very, very warm. My core temperature tends to be below 98.6, though.

16. Excessive earwax production my entire life. Eardrums quickly get covered again after ears are cleaned out. Eustachian tubes always feel clogged. Turbinates in nose chronically swollen. Postnasal drip all the time.

17. I look tan, athletic, and healthy. Sigh.

So, overall, I've been limping along for about a decade (I'm 29 now) thinking that this was normal, but now that things have gotten worse, I realize things haven't been normal for ten years. Everything takes too much effort and the situation is affecting my relationships and work. Still limping along, calm, taking care of myself, but frustrated and concerned. It's been like this for weeks. I'm going to go back to my doc, and my health insurance is ok, but I'm a student and visit/lab copays, etc. would be a constant drain if he even deigns to go through the million tests that will probably have to happen.

Ideas? I don't really want to manage symptoms. I want to fix it...
posted by zeek321 to Health & Fitness (44 answers total) 15 users marked this as a favorite
Lyme disease?
posted by lockestockbarrel at 3:21 PM on July 9, 2010

If you think you were bitten by a tick, you should see a Lyme disease specialist, not a clinic or family practitioner. Brain fog is a pretty common symptom of Lyme disease, as is joint soreness and aching. Lyme can be difficult to diagnose, as once you've developed chronic Lyme disease, the standard Lyme tests administered by your GP won't detect it.

You should also think about going in for a sleep study to rule out sleep apnea.
posted by burntflowers at 3:22 PM on July 9, 2010 [2 favorites]

I would really recommend continuing to talk to your doctor about this. It is unlikely that Metafilter will diagnose better than a GP or therapist, and as such can only offer guidance and experience over being able to fix it.

As it happens, I knew someone who displayed similar symptoms who was diagnosed with M.E. Like I say, though, their symptoms were chronic and extreme, so don't freak out without consulting your doctor further. It could just as easily be a long-term result of your anxiety and depression.

It looks as though you're also clumping together 17 separate things and creating a massive anxiety wall in your head. At least some of these symptoms need consideration by a doctor, but many of them are just a result of being, well, human.

You're healthy, you eat and sleep well, you're maintaining a relationship, you're self-aware enough to seek help when you need it. I don't think I've ever managed all of those at the same time.
posted by dumdidumdum at 3:27 PM on July 9, 2010

Came in to recommend a lyme disease clinic.

And randomly ask if you eat a lot of fish. There is a doctor here in the bay area that sees a lot of people with elevated mercury levels - she calls it "fish fog".
posted by Wolfie at 3:27 PM on July 9, 2010

Pursue the possibility of Lyme disease. I'd also get a referral to a neurologist.
posted by tetralix at 3:27 PM on July 9, 2010

How about Chronic Fatigue Syndrome? Some of your symptoms seem to match ... though, you know what they say about doing medical research on the internet... it's great for the hypochondriac.
posted by crunchland at 3:27 PM on July 9, 2010

I don't have specific diagnosis suggestions, but as the daughter of a man who struggled against similar symptoms for years before getting any real help, I must ask if you have any close friends/family members that you can bring in to advocate on your behalf (you mention that you have a girlfriend, but I don't know how close you are and if she has the time/inclination to do this). Being sick and fatigued is the worst time to try and deal with various doctors and specialists on your own.

If not, you can see if there are any services local to your area - sometimes non-profit organizations will provide nurses on a sliding scale to assist in these sorts of situations.
posted by muddgirl at 3:29 PM on July 9, 2010 [1 favorite]

Also, you need to prepare yourself for the possibility that this is the "new normal" for you - that there is no "fix". After a barrage of tests my father was diagnosed with CFS, which essentially means "We don't know what's causing your symptoms". He's pretty much on permanent symptom control.
posted by muddgirl at 3:31 PM on July 9, 2010

I think the next step would be to get a referral to a neurologist, get thorough bloodwork and an MRI to rule out Lyme and other such neurological conditions. The neurologist will be better equipped than the GP to ask the right questions and get the right tests relevant to the concerns you've listed above. It could save you a step or two and the copays that come with.
posted by dayintoday at 3:32 PM on July 9, 2010

What were the "usual" tests the doctor ran?

Did you get your TSH (thyroid stimulating hormone) tested?

What about fasting blood sugar?

Many doctors don't test men for thyroid function, but many of your symptoms sound similar. I am not a doctor.

Do you have allergies/hayfever?

posted by annsunny at 3:32 PM on July 9, 2010

Someone I know with MS experiences a lot of symptoms similar to what you describe. Might be worth seeing a neurologist. If they suspect it, they will also check you for Lyme disease, B12 deficiency, neurosyphilis, and a bunch of electrolyte disturbances too. Hopefully your doc has already looked into these things, but maybe not.
posted by vytae at 3:34 PM on July 9, 2010

you're totally hypothyroid, dude. are the outside edges of your eyebrows thinned/thinning?

Throughout life, disorders associated with hypothyroidism include headaches, migraines, sinus infections, post-nasal drip, visual disturbances, frequent respiratory infections, difficulty swallowing, heart palpitations, indigestion, gas, flatulence, constipation, diarrhea, frequent bladder infections, infertility, reduced libido and sleep disturbances, with the person requiring 12 or more hours of sleep at times. Other conditions include intolerance to cold and/or heat, poor circulation, Raynaud's Syndrome, which involves the hands and feet turning white in response to cold, allergies, asthma, heart problems, benign and malignant tumors, cystic breasts and ovaries, fibroids, dry skin, acne, fluid retention, loss of memory, depression, mood swings, fears, and joint and muscle pain.

lots more here.

if tests confirm, try to get treated with dessicated swine thyroid and not the synthetic.
posted by kimyo at 3:39 PM on July 9, 2010 [1 favorite]

Response by poster: (I know you are are not my doctor!) Everything almost exactly in the middle of the normal range:

glucose, urea nitrogen, creatinine, eGFR, sodium, potassium, chloride, CO2, calcium, protein, albumin, globulin, bilirubin, alkaline phosphatase, AST, ALT, TSH, white/red blood cells, hemoglobin, hematocrit, all sorts of immune system stuff (neutrophils, etc., etc.) and on and on.

Since it was sudden onset, he said wait a few weeks and I'll probably feel fine. Just scheduled a new appointment.
posted by zeek321 at 3:42 PM on July 9, 2010

Response by poster: Oh, also, I don't seem to have any digestive issues. Totally regular, no discomfort. Only one thing: pretty prone to acid reflux (but no heartburn).
posted by zeek321 at 3:44 PM on July 9, 2010

It could be many things, but one thing to check is Lyme. But do NOT go to your run of the mill infectious disease specialist: you need to find an infectious disease specialist with a sub-specialty in Lyme Disease and someone whose perspective is informed by recent scholarship on the subject.
posted by SuzB at 3:45 PM on July 9, 2010

Response by poster: Pretty healthy libido (that is, off the charts, 24-7). Also, I get sick *all* the time.
posted by zeek321 at 3:46 PM on July 9, 2010

The sinus thing- I know a number of people who thought they had CFS, Lyme etc but turned out to have chronic sinus infections. After what one of my friends called "roto rooter surgery" the difference in her health and energy was amazing. She had such a long standing infection that she had deformed bony growths all up in there and massive amounts of tissue removed. She was 30 or so.

We all worked I'm an industry where exposure to irritants (sawdust, chemicals, dust, salt) was a daily occurance so YMMV but maybe see am ENT?
posted by fshgrl at 3:48 PM on July 9, 2010

I would go see a neurologist. The question and answer form they give you as a new patient asks about a lot of the symptoms you listed above. (Trouble sleeping, loss of vision, brain fog, etc.)
posted by np312 at 3:50 PM on July 9, 2010

In the spirit of "throwing stuff against the wall to see what sticks" diagnosis (IANAD or even close), your list of symptoms made me think of two things:

1. Migraine. Not all migraines have the classic asymmetric-pain-and-visual-aura symptoms. Your #1, 3, 5, 12 are reasonably common migraine symptoms. I don't know how you'd go about diagnosing it for sure— see a neurologist, I suppose— but if you do have atypical migraines, perhaps there'll be a few migraine triggers that you can simply avoid, and if not, there are various migraine-specific drugs.

2. Caffeine. You don't mention caffeine at all. I bring it up because coffee in particular affects my sleep in a subtle way: I still sleep through the night, but it's not terribly restful, and I end up with brain fog and fatigue and aches, which I'm naturally inclined to fight with… more coffee. Bad idea for me! I have a couple of friends who also react poorly to coffee. If I were you I'd try eliminating caffeine for a couple of weeks (if you currently use it heavily then taper off slowly, of course) simply because it's a really, really easy thing to check for.
posted by hattifattener at 4:44 PM on July 9, 2010

Did you get your lead levels tested, out of curiosity? Some of the symptoms you describe are common to chronic lead exposure.
posted by Ouisch at 4:46 PM on July 9, 2010

I don't want to get too personal, but if your extreme thirst is also met with lots of clear urine, you may be looking at a pituitary deficiency. This can have some of the symptoms similar to thyroid problems mentioned above, but as you have had your TSH tested, thyroid *seems* to be contraindicated.

Still, you didn't have T4 and T5 tests done, so you can't really rule out thyroid.

Adrenal fatigue syndrome can cause that brain fog, too.

So, with all the hormonal stuff that could be related going on, I'd personally seriously consider seeing an endocrinologist.

Sounds like time for a specialist.
posted by misha at 4:49 PM on July 9, 2010

Response by poster: No caffeine ever. Clear urine except within a few hours of taking a multi.
posted by zeek321 at 4:52 PM on July 9, 2010

Always Thirsty -- check for diabetes.
posted by KRS at 4:59 PM on July 9, 2010

zeek321, check your MeFi mail.
posted by jocelmeow at 5:04 PM on July 9, 2010

Seconding the sleep test to rule out sleep apnea.
posted by baho at 5:23 PM on July 9, 2010

Always Thirsty - Check for Sjogren's wife has many of these symptoms, she has multiple diagnoses for adrenal insufficiency, thyroid issues etc, but our doctors think that the Sjogren's is at the heart of it. Problem is, many doctors will tell you that Sjogren's is an "annoyance" disorder that just affects the mucous membranes - this is viewpoint that is about 20 years out of date. Research is showing that more and more symptoms can be attributed to it, including many endocrine and sometimes neurological problems.
posted by WASP-12b at 5:29 PM on July 9, 2010

Systemic lupus?
posted by sa3z at 5:36 PM on July 9, 2010

It's interesting how, when you have a few clear symptoms, there are SO MANY things that could be wrong with you. And everybody will be convinced that what's wrong with you is the one thing they know well. If I believed every website that has symptoms matching mine, I have everything from Multiple Sclerosis to Cushing's Disease; the list of what COULD be wrong with me is about a mile long, and everything on it is terrifying. It's easy to panic and freak out when there are so many things that *could* be wrong with you.

Let the doctors do the diagnosing! If you're worried you may not be able to present all the details clearly, write it all down so it's handy when you're there, and you can refer to it if the brain fog messes you up.

For what it's worth ("here's what's wrong with me! I'm sure it's what's wrong with you too!"), you did mention that you don't feel like sleeping accomplishes anything... my brain fog and general malaise let up a lot when I started getting more refreshing sleep. Poor sleep quality can totally wreck your life. It's worth considering a sleep clinic as one of your options--sleep apnea isn't the only cause of poor quality sleep.
posted by galadriel at 6:02 PM on July 9, 2010 [1 favorite]

-Did you get the actual test results? Or did the doctor call you up and tell you they are all within range? You are a paying customer, you should have them in hand by way of fax or pick them up.
-Next question, did you have your "regular" doctor do these tests? Because you really should of had an Endocrinologist do the majority of them. A really good doctor may be able to give you a good check up and give a good read on what's wrong with you, but if it's not something that he could tell you what's up before you walked out the door than you should be heading off to a specialist. If you go see an Endocrinologist than see one that specializes in reproductive therapy and hopefully one that has dealt with enough men to even give you the proper tests. Here's a forum post from some guys who read voraciously on the subject of hormone imbalances

I have no idea what you have. I've had brain fog before and it isn't any fun. I found out what it was for me and I took care of it.
posted by P.o.B. at 6:54 PM on July 9, 2010

Response by poster: Thank you, everyone. Still watching this thread. Totally gonna work with the doc(s), but having a little bit of hive mind at my back really does make me feel better. Will constructively, sanely refer to this if there's a dead end. Bleh.
posted by zeek321 at 7:25 PM on July 9, 2010

Endocrine geek and neuro geek, infectious disease geek if the other geeks don't turn up anything. Low vitamin D can cause aches, pains, and brain fog/ fatigue, too, but you'll need a blood test for that-- don't just go throwing vitamin D in there in huge doses without the test first.
posted by fairytale of los angeles at 7:31 PM on July 9, 2010

I was going to mention Vitamin D3, but *shrug* the FDA's RDA on it is 400 iu. I've read your body can produce 500 times that on a nice sunny day. That puts it in one of those "experts agree on this, but other experts say this" areas that I'd rather not tread.
posted by P.o.B. at 7:50 PM on July 9, 2010

I am NOT a doctor, but do write medical articles professionally.My Experience turned out to be Lyme Disease. The 'rash' does not happen with everyone. This disease took $39,000US to diagnose, because they kept testing me using ELISA, and because they kept coming back negative they did not follow up with the Western Blot. Be VERY proactive, ask the doc to test BOTH protocols!!!!!!!I suffered horrible, horrible pain and after three months of crippling symptoms I'm now on chemo and feeling much better. This is an emerging infectious disease that is calling attention to the fact that it is not only Lyme CT USA that has this malady, but even those in the deep south and Africa, SA, and many other countries share this problem. Good news, it IS treatable!
posted by ~Sushma~ at 8:10 PM on July 9, 2010

Fatigue and brain fog are also common symptoms of auto-immune diseases. Since nobody else has suggested it directly, ask your doctor about auto-immune markers (especially ANA, for lupus) and consider a rheumatologist as well. They are the masters of mystery diagnoses.
posted by hydropsyche at 4:43 AM on July 10, 2010

Wow, dude - not to understate or trivialize your symptoms, but as I read your list I thought to myself, 'hey this could be me!'

Seriously, I could take on all of those symptoms. I never really think of it as a disorder, because I've always felt that way. I just figured it was the way I was made. And, since my life has always been very high-functioning and above-average, why change?

To get around #1, I just drink mad doses of coffee.
posted by TheOtherSide at 5:41 AM on July 10, 2010

My husband and a former roommate had ongoing symptoms like that for a few months--it was a low-level gas leak from the furnace. Have you had your gas lines checked? Carbon monoxide levels
posted by mimi at 5:44 AM on July 10, 2010

Response by poster: For those with similar symptoms, this morning I removed *all* grains, and *all* seeds from my diet. Bulk of calories: fruit with a little bit of meat, but no bananas or super-exotic stuff. Also, "vegetable fruits" (that is, tomatoes and cucumbers). And, romaine lettuce and celery. (I *may* try "true root" vegetables--e.g. carrots.) I'm only eating "true botanical nuts," and not very many (true botanical nuts = actually more or less a fruit, but they have some seed-like qualities.) A tiny bit of canola oil and a tiny bit of olive oil. I may add fish or krill oil after I see what the environmental impacts are. And that's it!

See here:

The basic rationale is try to almost exclusively eat plant foods that *want* to be eaten. (Not necessarily raw and not veg*n.) So, kinda paleo. I'm going to cook meats and fish around 220F--that is, comfortably above boiling to kill parasites without denaturing the meat too much, leaving the meat in plenty long because of the low heat.

This is pretty much the only diet I haven't tried yet on the planet.

I just ate rasberries, cherry tomatoes, romaine lettuce, a tiny handful of filbert nuts, and a green apple (only kind of apple I like). That was a half hour ago, and my mouth got all tingly and felt my glands below my jaw swell up a little bit, and I have a bit of a stomachache. BUT, my head feels noticeably clearer, and I feel a "healthy tired," not an "anxious, useless tired." Too soon to draw any conclusions! (Most recently I've been eating lots of rice and beans and potatoes because they're supposed to be reasonably hypoallergenic/tolerable. Oops.)

Hope this helps other people. Will report back here in a few days or MeFi-mail me until the end of time.
posted by zeek321 at 11:24 AM on July 10, 2010

Response by poster: To be totally clear, where I start "Bulk of calories...," and everything following, that's the NEW diet that I'm trying. Grains and seeds were in the old diet.
posted by zeek321 at 11:26 AM on July 10, 2010

One more question: Have you been tested for celiac disease?

Well, two: Have you been tested for allergies, especially food?
posted by annsunny at 3:39 PM on July 10, 2010

IANAD, and you have already said you're going to work with your doctors. That acknowledged, I used to have some bad brain fog with my fibromyalgia. L-theanine (Suntheanine) prevents that for me. You can get it inexpensively on Amazon.
posted by bryon at 3:08 PM on July 11, 2010

Response by poster: For those keeping score: In retrospect, things took a huge turn for the worse when I ate a lot of amaranth (and other stuff, which confounded the issue), which is a seed that cooks like a grain. Soon after that, split peas, lentils, and rice became staples of my diet (all of them "seeds")... because I was spooked and erroneously tried to eat hypoallergenic stuff. Today and yesterday, I ate only fruit, meat, romaine lettuce, cherry tomatoes, and tree nuts. I am very, very tired, but the ghastly, living-hell brain fog has lifted.

Now my mind feels like a much more tolerable "tired-slow," and I don't have that feeling like I want to claw out of my skin every waking moment. Hopefully sleep tonight will start to lift this fatigue--presumably, I hope, my body is working on healing whatever was seriously screwed up--and I'm going to stay the hell away from grains and seeds for a while.

I may drop even the tree nuts. I do have concerns about getting enough calories, but one thing at a time.
posted by zeek321 at 4:06 PM on July 11, 2010

Have you tried an elimination diet? You can look up (or buy in book form) a schedule of removing almost everything from your diet and then adding back foods in specific categories one at a time to see how they affect you. It sounds like you've suspected your diet of being a problem for a long time, so it might be a good thing go go through the process of methodically, systematically working out what foods you need to avoid. Doing it less methodically can be misleading, if you normally eat food A at the same time as food B, or don't realize that food C isn't in the category you thought it was. Elimination diets also encourage you to stick with each given diet for a while (a couple weeks, say), which helps you avoid getting fooled by delayed reactions or unrelated problems (like, maybe you get brain-foggy from time to time even without a food trigger).

(It's probably a good idea to mention the idea to your doctor, if you're going to do it and are seeing your doctor anyway.)
posted by hattifattener at 12:35 AM on July 12, 2010 [1 favorite]

Lyme, Lupus, Fibromyalgia and ME. Perfect for years of fruitless doctor hopping. Do not go that way unless you've excluded more simple causes.

If you assume all the tests are perfect and you doctors have not made any errors AND considering:
- your state is affected by your diet
- all your blood levels are OK (what about CRP by the way?)

You could question which one you're suffering of:
- an obscure disease
- an excess of something (to be determined by elimination diet, celiac disease, allergies etc.)
- a lack of something

In the last case I'd consider
magnesium deficiency (does not show in blood tests, except in extreme cases).

The last one explains at least the kidney issues, higher resistance to pain (CNS influence), panic attacks and chronic fatigue. The rest of the symptoms could be explained by some opportunistic infection or parasite (would explain the weight issues).
posted by Eltulipan at 9:25 AM on July 12, 2010

Or maybe you're just not getting enough calories, or the right balance of calories, in your diet. I really, really hope you've been discussing your elimination diets with a dietician or a licensed nutritionist.
posted by muddgirl at 10:51 AM on July 12, 2010

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