Running on fumes
April 28, 2018 10:50 AM   Subscribe

I can't do anything. I'm always tired. It feels so physiological but every neurologist and other specialist I've been to says it's anxiety or depression or a mix of the two. But I don't know if to believe them when literally doing anything feels like dragging around a ball of lead that's resistant to anything. No medication has worked, including Adderall after its honeymoon period. Same goes for any and all antidepressants and therapy. I don't want to waste my life.

Is this really psychological? I used to be able to write 10 pages in a few hours. Now doing anything other than eating or ordering on Amazon feels like climbing a mountain through the thinnest air. I can't put a sentence together. Can't take a shower unless I'm forced to by an external obligation (doctor appointment, etc). I've had every medical test imaginable performed. Nothing. No sugar, vitamin, sleep or hormonal issues are evident. Imaging of the brain and cervical nerves is unremarkable.

What are the thoughts underlying this pervasive, utterly disabling inertia? I never have the endurance to stick with anything that could change my circumstances. This isn't about separating my worth from my productivity. What do I need to do to fix this? I'm so tired. I feel nothing. Everything is SO hard. Hope me?
posted by marsbar77 to Health & Fitness (41 answers total) 23 users marked this as a favorite
Have you researched chronic fatigue syndrome, fibromyalgia, or mitochondrial dysfunction (broken ATP processes in particular)?

Lots of data on the internet about these that might give you a clue if you're convinced it's physiological. Reading internet posts is a task about equivalent to shopping on Amazon, so right now that's your best gateway to figuring out what is wrong.
posted by ticktickatick at 10:57 AM on April 28, 2018 [2 favorites]

The first thing I thought of when reading your question was chronic fatigue syndrome, also sometimes called chronic fatigue immune dysfunction. I am not a doctor, but a famous soccer player (Michelle Akers) had it and she had to fight through it to be able to continue her career. The way she has described it sounds like what you describe. I'm sure there are other possibilities though. I would keep researching and not accepting that it's just depression or anxiety if you don't think those fit or treatment for those haven't worked.
posted by AppleTurnover at 11:08 AM on April 28, 2018

I felt that way for about two years, a few years ago. Eventually got it together to make an appointment with a well-regarded chronic fatigue specialist. He turned up after his registrar had interviewed me for a while, then told me he thought I might be "grieving excessively" over my mother having died four years prior.

FUCK that guy. What a waste of 700km of driving he turned out to be.

I started feeling better after I took to eating one hot chili pepper every day (the little red birdseye ones, raw, just crunch the bastard up and swallow it down and deal with the pain and the sweating and the drooling and the hiccups). Did that for about a month, after which I had regained sufficient motivation and freedom from pain to start having another serious tilt at losing weight.

I won't say it couldn't hurt, because it fucking does. But it helped me.
posted by flabdablet at 11:09 AM on April 28, 2018 [4 favorites]

Response by poster: To clarify: I feel a little better for an hour or two when I do something like use a hypnotherapy app or manage to get to the gym ( if ever, because I'm in a wheelchair) so... I dunno. On the one hand, I want very much to "find something", on the other hand, I'm dreading that something being things like CFS because I know that it's one of those things with no real light at the end of the tunnel and that you're just forced to deal with for the rest of your life. Depression, as amorphous as it is, allows for just a little more hope. And there's reason to still suspect that that's what it is. But again...I'm at a loss. Okay, done threadsitting
posted by marsbar77 at 11:14 AM on April 28, 2018

What fladablet says above, basically- inflammation. They did a chili pepper a day, I take supplements and do kundalini yoga regularly. My life is 1000% different today. You do you, but maybe start thinking about the issue in these terms/solutions? Kundalini yoga involves A LOT of breathwork and deep breathing, which addresses inflammation and stress, and that's why I think it works.
posted by jbenben at 11:18 AM on April 28, 2018 [3 favorites]

How is your sleep? I had TERRIBLE sleep for a couple years because of a combination of depression, breathing problems, and getting less exercise than I ever had (was in grad school). Getting on Ambien and Wellbutrin (a stimulant as well as an anti-depressant) helped jump start things so I could be marginally functional. So did exercising every day and eventually getting sinus surgery for my breathing issue. But at the heart of it was, I need SLEEP. Good quality sleep and enough of it.
posted by rue72 at 11:18 AM on April 28, 2018 [5 favorites]

I know that it's one of those things with no real light at the end of the tunnel and that you're just forced to deal with for the rest of your life.

I'm not the only person I know who no longer has CFS, which is a syndrome (pattern of symptoms) rather than a condition with one single untreatable cause. I'm sure there exist untreatable underlying conditions that cause CFS, but just having the symptoms doesn't automatically mean you have one of those.

And being constantly horribly tired and aching all over for no apparent reason is fucking depressing, so they're probably not really separable.
posted by flabdablet at 11:19 AM on April 28, 2018 [5 favorites]

You can do Kundalini yoga in a wheelchair. There are plenty of youtube videos, but I know you would be welcome at any dedicated kundalini teacher's class. See if you can find one in your area.
posted by jbenben at 11:20 AM on April 28, 2018 [1 favorite]

This was me. I have a vitamin B12 deficiency. I started getting shots about 6 weeks ago, and am kinda finally starting feel normal again. Still not good, but better than I've felt in a long time.
posted by Green Eyed Monster at 11:22 AM on April 28, 2018 [5 favorites]

This sounds like me also. My thyroid tested in the "normal" range, though kind of on the low side of normal. In consultation with my doctor, I began to take synthroid/thyroid medication, and that has made a huge difference in my overall health and well being.

My friend also comments that this sounds similar to her fibromyalgia.
posted by gudrun at 11:34 AM on April 28, 2018 [4 favorites]

Have you been tested for Lyme Disease? I ask because I know three different people who dealt with these symptoms for a long time (FIVE YEARS in one case) before being diagnosed with Lyme disease. In the case of the friend who wasn’t diagnosed for five years, she went from being a super active 25 year old to being on disability and spending time in a wheelchair because it got so bad. She tried some other things like diet and such that did help a little for a while, but nothing really helped until she was diagnosed and began treatment for Lyme disease.

Also, this may be obvious, but if you have not been tested for Vitamin D deficiency and/or anemia, do get checked for both. I had both one winter and it made me feel much like you. (I know you said you’ve been tested for anything, so these are probably ruled out, but it’s shocking to me how many people with Lyme disease go undiagnosed.)
posted by lunasol at 11:38 AM on April 28, 2018 [2 favorites]

Seconding the recommendation to get checked for Lyme.
posted by Sheydem-tants at 11:54 AM on April 28, 2018

Nope Nope Nope Nope Nope. Get you a doctor that BELIEVES YOU! (easier said than done.)

I have written about illness before. Here's a good how-to.

Use what I wrote in that answer to actually, clearly explain the changes that have happened and the things you can't do. This is not normal functioning healthy body stuff. This isn't just anxiety. If a doctor suggests that and nothing else, find a fucking new doctor.

It is VERY likely you have some sort of chronic illness - as noted above there are things that there isn't a definite test for or things that are tricky to test for.


I know it's scary to think there may be something that you have that may not go away. But TRUST ME - knowing it means there ARE treatments. There are things to do for stuff like CFS. There are specialists for it. AND that means you have a better understanding of what you may need accommodation for in life such as workplace or scheduling accommodation to make your life more manageable.

Feel free to DM me if you want or find me on Instagram. I personally have POTS - which is really hard to diagnose and causes severe fatigue and other issues. I also have IBS, GERD, Endometriosis, Anxiety, migraines, vision problems, vertigo, and have had gallbladder disorder and appendicitis. It took going through MANY doctors that told me there was "nothing wrong" after super basic blood work before nearly ALL of that was found out and a few years and two surgeries later I'm in a much better place.
posted by Crystalinne at 12:12 PM on April 28, 2018 [11 favorites]

Not a doctor, but as someone on a stimulant for ADHD Adderall seems like it would not be a great medication for what you described—did anyone try you on Modafinil/Provigil?
posted by Polycarp at 12:15 PM on April 28, 2018 [5 favorites]

A friend of mine tested negative for Lyme, but the symptoms persisted and when she insisted on a second test it was positive and she responded to the medication. So there's that to consider.

Your symptoms also sound similar to the autoimmune fog I got when my autoimmune conditions are flared up. (Which is all tied in with the inflammation mentioned by others above.) And as flabdablet pointed out, comorbidity with depression is absolutely a common thing.

Nthing the advice about vitamins D and b12, too. I take prescription strength supplements of both, and they do make a difference.
posted by The Underpants Monster at 12:30 PM on April 28, 2018

It sounds like you still aren't getting enough exercise. There certainly may be other stuff going on, but while you're getting that sorted out, exercise may be a good place to focus in the meanwhile.

From Wikipedia on major depressive disorder:
Physical exercise is recommended for management of mild depression,[132] and has a moderate effect on symptoms.[133] Exercise has also been found to be effective for (unipolar) major depression.[134] It is equivalent to the use of medications or psychological therapies in most people.[133]
From the Wikipedia page on ADHD:
the long-term effects of regular aerobic exercise in ADHD individuals include better behavior and motor abilities, improved executive functions (including attention, inhibitory control, and planning, among other cognitive domains), faster information processing speed, and better memory.[153][154][155] 
From wikipedia on management of cerebral palsy:
It has been argued that people with cerebral palsy need to maintain a higher level of fitness than the general population to offset loss of functionality as they age.[9]
You marked best answers to your exercise question, so it looks like you have options.  If you need to work up motivation to get exercising, check out the book called "Spark: The Revolutionary New Science of Exercise and the Brain "
posted by aniola at 12:57 PM on April 28, 2018 [1 favorite]

Oh, right. And from the Wikipedia page for anxiety disorder:
Lifestyle changes include exercise, for which there is moderate evidence for some improvement [...] [88]
posted by aniola at 1:03 PM on April 28, 2018

Have they checked your iron levels? You can have low iron without being anemic. The reference range for iron and specifically ferritin is absurdly large (think 10-200). A lot of doctors dont check iron levels, and if they do, they'll tell you you're normal, even if your ferritin is, say, 12. A lot of people don't feel good until their ferritin is above 50 or even above 80. There is research to back this up, but most doctors are remarkably ignorant about it. Low normal ferritin can make you feel incredibly sick.

Get it checked. Doctors can be remarkably dismissive but the fatigue you're describing sounds so similar to my experience with iron deficiency and anemia. Sometimes you need to go though a lot of doctors before you find one who listens.
posted by Amy93 at 1:19 PM on April 28, 2018 [5 favorites]

I have had similar feelings... and my first thought was "allergies" - which I noticed you didn't list on your 'every test imaginable' list. Worth checking if you haven't. Some geographical areas are better/ worse for people with certain allergies to live etc.

Also, it's in the realm of the pepper idea, but explore Cold Shower Therapy. It has made a major impact on my life/well being etc.

and best of luck to you... keep fighting/ exploring/ testing...
posted by mrmarley at 1:22 PM on April 28, 2018 [1 favorite]

If your insurance allows self referral to a specialist, make an appointment with a rheumatologist that can do some blood work to check for any virus or autoimmune problem that is associated with fatigue. The good rheumys are used to checking for some weird stuff, and will believe you. And in fact, depression and anxiety can have a physical component as well, so don't assume this is in your head even if it sometimes involves those sort of classic psychological symptoms.
posted by crunchy potato at 1:44 PM on April 28, 2018 [8 favorites]

Just because depression medication and therapies haven’t worked doesn’t mean you can rule out depression. Depression is notoriously difficult to treat, even with medications and therapies. Not to be a bummer. Don’t stop trying, whatever it is.
posted by kapers at 2:06 PM on April 28, 2018 [4 favorites]

I also going suggest making sure it's not anemia, iron or B12.
posted by bongo_x at 2:52 PM on April 28, 2018

A severe vitamin D deficiency knocked me on my ass for a year. I used to get home and drop until morning, supplementing (after a test) fixed it.
posted by cotton dress sock at 2:56 PM on April 28, 2018

I was so exhausted for so many years that I cried when my GP ruled out a thyroid condition. I was desperate for a treatment, and failing that, at least a diagnosis.

A diagnosis of pernicious anemia and regular B12 injections have made a huge difference. PA causes depression and anxiety. Testing for B12, vitamin D and thyroid is simple, often overlooked, and worth asking for.
posted by DarlingBri at 3:02 PM on April 28, 2018 [2 favorites]

Going to second gudrun's suggestion of thyroid. Most docs will do a blood test, say, nope, you're in the normal range, can't possibly be that. I went around with that for two years of increasing fatigue and other symptoms that screamed hypothyroid until I finally found a holistic doc that looked at the symptoms, put me on natural thyroid, and I immediately felt 100% better. Yours may not be thyroid, but don't let doctors brush you off with "oh, it's depression." That just means they can't do a blood test for depression so it is their preferred default, "I can't figure this out, it must be all in your head" diagnosis. I know it is hard to be persistent when you are so exhausted. It took me a while to find a doc who thought beyond the textbook but didn't try to push too much woo.

Mary Shoman's Living Well with Hypothyroidism was a game changer for me.

Good luck.
posted by Preserver at 3:03 PM on April 28, 2018 [4 favorites]

Yes, please find a doc who listens to you. My ANA titers do not always show up in a way that reveals my systemic lupus, and I have fibromyalgia and borderline thyroid as well. Keep checking. An accurate diagnosis may take a while. And may not be the answer you want, but knowing how to start trying treatments is a big step!
posted by Nancy_LockIsLit_Palmer at 3:13 PM on April 28, 2018 [2 favorites]

In addition to thyroid check your parathyroid. My registered nurse MIL took years to bet diagnosed and have turmos removed from her parathyroid.

Also, I just wanted to note, for those suggestions exercise... kindly... that doesn't work for everyone and everything and I highly recommend first seeing what issues may be going on with your body before embarking on an exercise regimen that may make things worse.

Truly, a treatment for POTS is exercise but only YEARS into getting treatment for other issues am I finally able to even start doing light exercise. I was far too sick to do anything physical, even standing for more than minutes long some days.

There is also a large misconception that body problems are solved by exercise when they aren't. So, OP, dont' worry if you can't do physical exercise right now. Don't guilt yourself over it. Firstly, find out what is going on and THEN see what the treatment recommendations are.
posted by Crystalinne at 3:13 PM on April 28, 2018 [4 favorites]

When you say "no sleep issues are evident," do you mean that you've had an actual sleep study done? If not, get one set up as soon as you can. You sound like someone who might be suffering from sleep apnea without realizing it. This is quite common and generally very treatable.
posted by Anticipation Of A New Lover's Arrival, The at 3:37 PM on April 28, 2018 [4 favorites]

Lots of great recommendations above, and I wanted to add that for me getting a diagnosis of autoimmune (and other) disease, even though it meant multiple conditions that I have to deal with for the rest of my life, improved my depression. Because it validated the sense I'd had for years that something was wrong and got the doctors to stop telling me all I needed was more exercise, less stress, weight loss, better sleep, etc., and that "everybody's overtired these days".
posted by camyram at 4:09 PM on April 28, 2018 [2 favorites]

I don’t have clear signs of blood sugar issues from blood tests but I generally feel exhausted if I eat a meal that’s carb-heavy, especially first thing in the morning. I don’t need to avoid carbs entirely or anything, but I need to mix them with protein and some fat, and ideally also some green vegetables, so I don’t feel sleepy/fatigued. Even granola/oatmeal and other whole grains will do this to me, and I think it’s gotten worse as I’ve gotten older.

I don’t know if this is part of your issue or not but it’s something that’s fairly easy to test out by changing what you eat for a few days, so that’s something.
posted by needs more cowbell at 4:19 PM on April 28, 2018 [1 favorite]

A few people have mentioned chronic fatigue syndrome. I have what's sometimes called chronic fatigue syndrome, though I prefer the older name myalgic encephalomyelitis. I also have had a bout of bad depression in the past, before I developed ME/CFS, and I remember the fatigue that went along with it well. What happens with ME/CFS is different, though.

People with ME/CFS have a hallmark symptom known as post-exertional malaise or post-exertional neuroimmune exhaustion. That means if they extend themselves beyond their current limits, all their symptoms get worse (sometimes in a delayed fashion), at least temporarily and sometimes permanently. This question is not perfectly diagnostic because people with ME/CFS can have varying tolerance for activity (I can't exercise at all; some can a little), but when you do get to do some exercise or push yourself to get some things done that you don't ordinarily do, do you find that somewhere between right afterward and three days afterward you feel much worse, or does it not have that effect? People with ME/CFS will feel definitely worse in that timeframe. It's used as a diagnostic test for that reason.

Drop me a MeMail with your location if you'd like some possible suggestions on doctors who could help you rule out or in ME/CFS. There are surprisingly few who are specialists in it.
posted by jocelmeow at 5:13 PM on April 28, 2018 [3 favorites]

hi, i'm you. get tested for type 2 diabetes.
posted by j_curiouser at 5:50 PM on April 28, 2018 [2 favorites]

I also came to ask if you have had an in-lab sleep study. If not, it's worth doing.
posted by medusa at 6:35 PM on April 28, 2018 [2 favorites]

Yep, in-lab sleep study with a neurologist board certified in sleep medicine. If you already had one and either a) the overnight test was normal or b) the issues the sleep study identified are now corrected (apnea, restless legs, behavioral sleep problems, etc), then go back and say, "Hey, not getting any better. Getting worse." They can order another overnight polysomnogram (PSG) to be followed up with a multiple sleep latency test (MSLT) the next day. If you the tests show a certain level of measurable sleepiness, that will unlock some medicine options.

Sleepiness, fatigue, and related problems suck. It's debilitating and extremely hard to diagnose the root cause.
posted by Stewriffic at 6:52 PM on April 28, 2018 [2 favorites]

There are some medical practices that do a ton of testing by default, and believe that fatigue is a symptom with treatable root causes.
posted by batter_my_heart at 6:54 PM on April 28, 2018

It sounds like you still aren't getting enough exercise.

In my case, it was rage and frustration that general practitioners kept on saying that to me that led me to seek a consult with the (unfortunately also useless) CFS specialist.

Not getting enough exercise? Well NO SHIT, SHERLOCK. But perhaps that might have something to do with having found that any attempt to do anything reasonable like walk for more than five minutes at a stretch caused me to spend the following two days completely flattened by pain, to the extent of having no option but spending days in bed between frankly agonizing visits to the toilet? I FEEL HORRIBLE. Do you REALLY think I'm so incompetent at life that a bit of gentle exercise wasn't the FIRST thing I'd already tried?

One of the very few things that sucks worse than chronic disabling pain is the endless barrage of well-meaning but completely useless advice from people who have never had to deal with it themselves.

My own suggestions are probably every bit as useless, but at least they're coming from a place of actual rather than merely imagined sympathy.
posted by flabdablet at 7:44 PM on April 28, 2018 [17 favorites]

I came in to suggest hyper-parathyroid issues, usually caused by one or more tumors (nearly always benign) causing one or more of your four parathyroid glands to overproduce. That creates excessive calcium in your system, which causes brain fog and screws up your vitamin d levels as well. Exhaustion is typical. The good news is that the symptoms will abate within a few weeks of having the tumor(s) removed, the remaining gland will compensate, and the surgery is outpatient laparoscopic, so pretty easy. Consult an endocrinologist and rule thyroid issues in/out at the same time.
posted by carmicha at 8:09 PM on April 28, 2018 [2 favorites]

Has your breathing (specifically, your carbon dioxide levels) been checked? Muscular weakness can cause carbon dioxide retention, which could be the cause of your symptoms. (At least it was in me, when I felt that way.)
posted by Soliloquy at 8:12 PM on April 28, 2018 [2 favorites]

This is how I felt all the time before I was diagnosed with celiac disease. You said you've had lots of tests performed, but just in case I'd get a test for celiac, and try other food intolerances as well.
posted by cnidaria at 9:30 PM on April 28, 2018 [4 favorites]

Have they done an EKG? I had an atrial arrhythmia for years without knowing it - all I knew was I was exhausted all the time. They had tested me every which way and found nothing, and then one doctor decided on the spur of the moment to give me an EKG. They ran it three times to make sure it was right, then told me to get to the ER immediately. It was scary as hell, but it’s better to find out than to just drop dead from a stroke one day.
posted by MexicanYenta at 4:30 AM on April 29, 2018 [2 favorites]

Provigil (modafinil) may be for you, if you haven't tried it yet.
posted by Anticipation Of A New Lover's Arrival, The at 4:02 PM on April 29, 2018

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