Fatigue: when doctors are out of ideas edition
June 25, 2021 9:57 AM Subscribe
For the last couple of years I've been experiencing a higher level of fatigue than was normal for me previously. I've had a bunch of investigations done, my bloodwork is stubbornly normal, I don't have sleep apnoea, and the GPs I have access to are at the "maybe it's chronic fatigue or mental health but we're not going to do any more investigation for potential physical causes" stage. What else, if anything, can I do?
Note: This is all happening in the UK within the NHS, so I can't easily get a second opinion or get referred to specialists just by asking repeatedly - some of the US-centric approaches that often get suggested on the green for seeking out second opinions, insisting on referrals or finding more optimal medical care etc. just don't apply here.
Background
I was diagnosed with anaemia in late 2019 and have been taking oral iron ever since. My haemoglobin is back up to normal (150 g/L as per bloodwork done last month), my ferritin (25.8 mcg/L) feels low compared to what I've heard random people online say they needed that number to be in order to feel okay, but the bottom of the reference range over here is 10 mcg/L and the GP I just spoke to was belligerently insistent that she couldn't even justify prescribing me oral iron (let alone something like an infusion) with numbers that are "normal".
I have scalp psoriasis and hidradenitis suppurativa, both poorly controlled. I've had so many negative experiences of seeking care via the NHS that I've found it hard to get both conditions under control - if I were calling the GP every time I had a painful boil leaking gross-smelling pus, I'd be calling them most days. There is almost no continuity of care within the part of the NHS I have access to, I've seldom seen the same GP more than once, and I've never been offered treatment for the HS beyond the occasional tube of antibiotic gel.
I have a pretty complex mental health & trauma history that I think is best described as complex PTSD + autism, though I've never been formally diagnosed with either, but largely for systemic reasons rather than because I don't meet the criteria for those conditions. I do have a formal diagnosis of bipolar that I've never been able to get off my records even though I'm pretty certain at this point that I'm not bipolar (I haven't taken any psychiatric medication since 2017 and have had no episodes in either direction that have been severe enough to require treatment since then [and only depression, which was always my main issue in the past; no mania or hypomania at all]).
I've had ovarian cysts in the past that required surgery, and some PCOS symptoms but have never been formally diagnosed with PCOS.
The problem
Since the original anaemia diagnosis in 2019, I've had consistently less energy than I'd like. Right now I feel like my energy window is a lot smaller than it was pre-2019 and that I can do something like 25-50% (depending on the day) as much physical exercise and activity as I'd ideally like to be able to do to maintain my physical and mental health. I also feel like I've exerted myself pretty strenuously after doing basic household activities like walking upstairs or doing laundry.
Other investigations
I've had a basic home sleep study with pulse oximetry, no concerns based on the data (the doctor offered me a more invasive followup with more monitoring just to 100% rule out sleep apnoea if I wanted to, but said he didn't think it was necessary, and I declined because I have sufficient sensory issues that even the overnight wristband device from the basic study was hard to sleep with comfortably).
I've had basic thyroid bloodwork done (TSH 1.62 mU/L as of last month, thyroid antibodies normal; I've also had some private bloodwork done to check for free T3 & T4 just in case, but haven't had the results back yet). I've also had an ultrasound of my thyroid, as I've had nodules in the past and it's been feeling uncomfortable and lumpy lately; the u/s showed borderline inflammation that might be thyroiditis, and I've been referred to an ENT specialist to look into this further, but waiting times are long at the moment and I have no idea when this is going to happen.
As of the bloodwork last month my B12 was 295.0 ng/L (again, on the low end of normal; the bottom of the UK reference range is 211 [though, again, I've heard anecdotally about people who didn't feel better until this number was above 500]). I had a B12 shot last year when thaat number was even lower that helped a bit, but, again, I don't think I'd be able to get a doctor to justify treating this when the numbers are "normal" according to their reference range (and, unfortunately, most of the doctors I've spoken to so far haven't been the kind who deeply understand the idea that individual people aren't reference ranges).
Against my better judgement, based on so many shitty experiences of NHS mental health care in the past, I've agreed to let the GP I spoke to today refer me for a mental health evaluation, despite being pretty convinced that this is only going to traumatise me further and with zero faith they can do anything to help my mental health based on years of experience navigating that system without a lot of success. The only thing that's really moved the needle for me in terms of mental health has been private therapy, which I'm already pursuing. Personally, while I'm aware I'm experiencing at least some degree of depression and anxiety, it's low grade - it's been much, much more severe in the past and I've never had physical energy symptoms like this. I've experienced depression-related low energy a lot in the past as well, and it just feels different to how I'm feeling now in a way that I can't really articulate. I don't feel like my body is heavy or it's a waste of time dragging it around like I did when I had depression-related low energy, I just feel like there's nowhere near as much juice in the tank as there used to be. Based on how my recent medical interactions have gone, it feels like I'm now ironically at greater risk of becoming more depressed, because I feel like I've exhausted my options and that no one can help me.
Lifestyle/rambling unhappiness section
Lifestyle-wise, I've been vegetarian for a long time, I generally get a decent amount of sleep (8+ hours) but it's not always refreshing, I take vitamin D supplements year-round. I also take omeprazole for acid reflux (not at the same time as the oral iron or other supplements), a daily antihistamine (cetirizine) for allergies and the progesterone-only pill. I sometimes supplement magnesium if I'm getting more light-triggered migraines or restless legs than usual, but it's not consistent. I don't smoke or drink any alcohol. I drink a lot of water. I work out 4+ times each week, a mix of strength and cardio, but not as much as I'd like to be able to because of these chronic energy issues. I'm 32 and AFAB non-binary, not taking any hormones for this. I don't menstruate due to the pill, so how I got anaemic in the first place is still a mystery that none of the doctors I have access to have any interest in solving (I also saw a private haematologist about it around the time I was diagnosed and she wasn't interested in figuring out the underlying cause either).
I'm very, very reluctant to accept that this is chronic fatigue or mental health related, although I realise both of those things are possible. I'm also feeling incredibly burnt out on the NHS in general, having had too many experiences of extremely crappy and inadequate care from that system by this point in my life. It's a barely-functional system and I struggle with the idea that I'm supposed to accept that it's good enough (indeed, to love and applaud it) and that I'm receiving appropriate care when it's never reliably met my needs for anything more complex than a UTI. I grew up in a house where I did not feel safe or cared for by the people who were supposed to take care of me and now I feel exactly the same about the medical system that is supposed to take care of me, in ways that are definitely retraumatising.
I do have a fairly high level of background health anxiety, coupled with some unhelpful behaviours and patterns around this stuff (lots of compulsive web searching about increasingly-specific medical issues, but huge reluctance to actually go to the doctor about my symptoms). The fact that I've had to push myself pretty hard to keep bringing this up as an issue is both indicative of how significant an impact the fatigue is having on my quality of life, and also seriously further demoralising me about seeking healthcare in the future (something I've seesawed on all my adult life) given how fruitless the process has been so far.
I also have some difficult family/trauma history around this stuff (my parents were medically neglectful, especially when I was a teenager, and my dad died young and unexpectedly of cancer that had extremely vague presenting symptoms, possibly hastened by the fact that his own useless NHS GP was convinced it wasn't cancer, except it was and by then it was too late and he was dead). I have very little trust in either myself or the system to help me maintain a good level of health. I'm also concerned after the GP call I just had that I'm one more appointment away from having "huge fuckin' hypochondriac" permanently stamped on my medical records, and that this is only going to make the system take me even less seriously than it already takes me.
I'm recently back in therapy and plan to bring this as an issue, more because of the distress that process of trying to deal with this fatigue is causing me rather than because I'm seriously entertaining the idea that my fatigue is mental health related. I feel like my body is screaming at me that something's not right but nobody is listening or interested.
The actual question(s)
So, to ask the actual question: what else? Is there anything else I can do to try to find a physical cause for this fatigue? Would I be better off just giving up and accepting that it's something like chronic fatigue or of psychological origin? Even if it is mental health or trauma related, why has this happened now when I felt okay pre-2019? And if it is mental health, trauma or autism burnout related (my job requires me to mask my neurodivergence quite a lot), what can I do beyond therapy to try to repair my energy levels? How does one make peace with the idea that the only medical system they have access to has repeatedly shown itself unable to meet their needs without just falling over from despair and giving up?
I'm doing okay financially and could afford to throw some more money at this if I thought it would actually be useful, but I'm also afraid anything I pay for will also come back normal or inexplicable and I'll have paid a bunch of money I could have saved just to further confirm that I'm a mentally ill hypochondriac. I also can't tell if it would be better to put that money towards something like working with a personal trainer who can help me step up my activity levels over time (I'm getting a lot better about doing exercise consistently, but I'm not good at pushing myself or motivating myself to go harder, and I also have a ton of trauma specifically from my dad being super abusive about my body, food and exercise habits the whole time I was growing up which mean that internal and external motivation on working out more kinda feel too much like abuse for me to be comfortable with that process, even though I know rationally that it's not abuse if I need the help and I'm consenting to it).
I'm feeling very shaken and hopeless and helpless after this most recent round of medical interactions. I'm sorry about the wall of text. I feel like this is a lot, too much, that I'm too much, and that it's easier at this point for an indifferent medical system to wash its hands of me than to actually try to help me at a time when I feel particularly shitty. I'd love some hope and some help if anyone has suggestions.
Note: This is all happening in the UK within the NHS, so I can't easily get a second opinion or get referred to specialists just by asking repeatedly - some of the US-centric approaches that often get suggested on the green for seeking out second opinions, insisting on referrals or finding more optimal medical care etc. just don't apply here.
Background
I was diagnosed with anaemia in late 2019 and have been taking oral iron ever since. My haemoglobin is back up to normal (150 g/L as per bloodwork done last month), my ferritin (25.8 mcg/L) feels low compared to what I've heard random people online say they needed that number to be in order to feel okay, but the bottom of the reference range over here is 10 mcg/L and the GP I just spoke to was belligerently insistent that she couldn't even justify prescribing me oral iron (let alone something like an infusion) with numbers that are "normal".
I have scalp psoriasis and hidradenitis suppurativa, both poorly controlled. I've had so many negative experiences of seeking care via the NHS that I've found it hard to get both conditions under control - if I were calling the GP every time I had a painful boil leaking gross-smelling pus, I'd be calling them most days. There is almost no continuity of care within the part of the NHS I have access to, I've seldom seen the same GP more than once, and I've never been offered treatment for the HS beyond the occasional tube of antibiotic gel.
I have a pretty complex mental health & trauma history that I think is best described as complex PTSD + autism, though I've never been formally diagnosed with either, but largely for systemic reasons rather than because I don't meet the criteria for those conditions. I do have a formal diagnosis of bipolar that I've never been able to get off my records even though I'm pretty certain at this point that I'm not bipolar (I haven't taken any psychiatric medication since 2017 and have had no episodes in either direction that have been severe enough to require treatment since then [and only depression, which was always my main issue in the past; no mania or hypomania at all]).
I've had ovarian cysts in the past that required surgery, and some PCOS symptoms but have never been formally diagnosed with PCOS.
The problem
Since the original anaemia diagnosis in 2019, I've had consistently less energy than I'd like. Right now I feel like my energy window is a lot smaller than it was pre-2019 and that I can do something like 25-50% (depending on the day) as much physical exercise and activity as I'd ideally like to be able to do to maintain my physical and mental health. I also feel like I've exerted myself pretty strenuously after doing basic household activities like walking upstairs or doing laundry.
Other investigations
I've had a basic home sleep study with pulse oximetry, no concerns based on the data (the doctor offered me a more invasive followup with more monitoring just to 100% rule out sleep apnoea if I wanted to, but said he didn't think it was necessary, and I declined because I have sufficient sensory issues that even the overnight wristband device from the basic study was hard to sleep with comfortably).
I've had basic thyroid bloodwork done (TSH 1.62 mU/L as of last month, thyroid antibodies normal; I've also had some private bloodwork done to check for free T3 & T4 just in case, but haven't had the results back yet). I've also had an ultrasound of my thyroid, as I've had nodules in the past and it's been feeling uncomfortable and lumpy lately; the u/s showed borderline inflammation that might be thyroiditis, and I've been referred to an ENT specialist to look into this further, but waiting times are long at the moment and I have no idea when this is going to happen.
As of the bloodwork last month my B12 was 295.0 ng/L (again, on the low end of normal; the bottom of the UK reference range is 211 [though, again, I've heard anecdotally about people who didn't feel better until this number was above 500]). I had a B12 shot last year when thaat number was even lower that helped a bit, but, again, I don't think I'd be able to get a doctor to justify treating this when the numbers are "normal" according to their reference range (and, unfortunately, most of the doctors I've spoken to so far haven't been the kind who deeply understand the idea that individual people aren't reference ranges).
Against my better judgement, based on so many shitty experiences of NHS mental health care in the past, I've agreed to let the GP I spoke to today refer me for a mental health evaluation, despite being pretty convinced that this is only going to traumatise me further and with zero faith they can do anything to help my mental health based on years of experience navigating that system without a lot of success. The only thing that's really moved the needle for me in terms of mental health has been private therapy, which I'm already pursuing. Personally, while I'm aware I'm experiencing at least some degree of depression and anxiety, it's low grade - it's been much, much more severe in the past and I've never had physical energy symptoms like this. I've experienced depression-related low energy a lot in the past as well, and it just feels different to how I'm feeling now in a way that I can't really articulate. I don't feel like my body is heavy or it's a waste of time dragging it around like I did when I had depression-related low energy, I just feel like there's nowhere near as much juice in the tank as there used to be. Based on how my recent medical interactions have gone, it feels like I'm now ironically at greater risk of becoming more depressed, because I feel like I've exhausted my options and that no one can help me.
Lifestyle/rambling unhappiness section
Lifestyle-wise, I've been vegetarian for a long time, I generally get a decent amount of sleep (8+ hours) but it's not always refreshing, I take vitamin D supplements year-round. I also take omeprazole for acid reflux (not at the same time as the oral iron or other supplements), a daily antihistamine (cetirizine) for allergies and the progesterone-only pill. I sometimes supplement magnesium if I'm getting more light-triggered migraines or restless legs than usual, but it's not consistent. I don't smoke or drink any alcohol. I drink a lot of water. I work out 4+ times each week, a mix of strength and cardio, but not as much as I'd like to be able to because of these chronic energy issues. I'm 32 and AFAB non-binary, not taking any hormones for this. I don't menstruate due to the pill, so how I got anaemic in the first place is still a mystery that none of the doctors I have access to have any interest in solving (I also saw a private haematologist about it around the time I was diagnosed and she wasn't interested in figuring out the underlying cause either).
I'm very, very reluctant to accept that this is chronic fatigue or mental health related, although I realise both of those things are possible. I'm also feeling incredibly burnt out on the NHS in general, having had too many experiences of extremely crappy and inadequate care from that system by this point in my life. It's a barely-functional system and I struggle with the idea that I'm supposed to accept that it's good enough (indeed, to love and applaud it) and that I'm receiving appropriate care when it's never reliably met my needs for anything more complex than a UTI. I grew up in a house where I did not feel safe or cared for by the people who were supposed to take care of me and now I feel exactly the same about the medical system that is supposed to take care of me, in ways that are definitely retraumatising.
I do have a fairly high level of background health anxiety, coupled with some unhelpful behaviours and patterns around this stuff (lots of compulsive web searching about increasingly-specific medical issues, but huge reluctance to actually go to the doctor about my symptoms). The fact that I've had to push myself pretty hard to keep bringing this up as an issue is both indicative of how significant an impact the fatigue is having on my quality of life, and also seriously further demoralising me about seeking healthcare in the future (something I've seesawed on all my adult life) given how fruitless the process has been so far.
I also have some difficult family/trauma history around this stuff (my parents were medically neglectful, especially when I was a teenager, and my dad died young and unexpectedly of cancer that had extremely vague presenting symptoms, possibly hastened by the fact that his own useless NHS GP was convinced it wasn't cancer, except it was and by then it was too late and he was dead). I have very little trust in either myself or the system to help me maintain a good level of health. I'm also concerned after the GP call I just had that I'm one more appointment away from having "huge fuckin' hypochondriac" permanently stamped on my medical records, and that this is only going to make the system take me even less seriously than it already takes me.
I'm recently back in therapy and plan to bring this as an issue, more because of the distress that process of trying to deal with this fatigue is causing me rather than because I'm seriously entertaining the idea that my fatigue is mental health related. I feel like my body is screaming at me that something's not right but nobody is listening or interested.
The actual question(s)
So, to ask the actual question: what else? Is there anything else I can do to try to find a physical cause for this fatigue? Would I be better off just giving up and accepting that it's something like chronic fatigue or of psychological origin? Even if it is mental health or trauma related, why has this happened now when I felt okay pre-2019? And if it is mental health, trauma or autism burnout related (my job requires me to mask my neurodivergence quite a lot), what can I do beyond therapy to try to repair my energy levels? How does one make peace with the idea that the only medical system they have access to has repeatedly shown itself unable to meet their needs without just falling over from despair and giving up?
I'm doing okay financially and could afford to throw some more money at this if I thought it would actually be useful, but I'm also afraid anything I pay for will also come back normal or inexplicable and I'll have paid a bunch of money I could have saved just to further confirm that I'm a mentally ill hypochondriac. I also can't tell if it would be better to put that money towards something like working with a personal trainer who can help me step up my activity levels over time (I'm getting a lot better about doing exercise consistently, but I'm not good at pushing myself or motivating myself to go harder, and I also have a ton of trauma specifically from my dad being super abusive about my body, food and exercise habits the whole time I was growing up which mean that internal and external motivation on working out more kinda feel too much like abuse for me to be comfortable with that process, even though I know rationally that it's not abuse if I need the help and I'm consenting to it).
I'm feeling very shaken and hopeless and helpless after this most recent round of medical interactions. I'm sorry about the wall of text. I feel like this is a lot, too much, that I'm too much, and that it's easier at this point for an indifferent medical system to wash its hands of me than to actually try to help me at a time when I feel particularly shitty. I'd love some hope and some help if anyone has suggestions.
Note: I live in the UK and have for over 10 years, struggling in the US (couldn't afford to go to a doctor) and on the NHS (being taken seriously).
IF it is possible for you, consider going private to seek more information.
On the whole, private appointments are 30 - 45 minutes, compared to NHS appointments which tend to be 8-10 minutes. There are often tests on the day of, which take a lot less time to return compared to the NHS. The downside is that these appointments are often in the region of £130 and tests will incur extra fees, but they'll tell you the price beforehand and you can decide whether you want a test or not.
When I went private, the answer to a similar issue I had was found within that appointment. Even then the doctor had found an answer to the possible issue, he still asked many questions and took the consultation very seriously.
(If you're anywhere near Birmingham or don't mind travelling, please PM me.)
posted by Ms. Moonlight at 10:10 AM on June 25, 2021
IF it is possible for you, consider going private to seek more information.
On the whole, private appointments are 30 - 45 minutes, compared to NHS appointments which tend to be 8-10 minutes. There are often tests on the day of, which take a lot less time to return compared to the NHS. The downside is that these appointments are often in the region of £130 and tests will incur extra fees, but they'll tell you the price beforehand and you can decide whether you want a test or not.
When I went private, the answer to a similar issue I had was found within that appointment. Even then the doctor had found an answer to the possible issue, he still asked many questions and took the consultation very seriously.
(If you're anywhere near Birmingham or don't mind travelling, please PM me.)
posted by Ms. Moonlight at 10:10 AM on June 25, 2021
I have had fatigue from that generation of antihistamines too. Flonase (daily nasal spray that takes a week to build up) has been better.
Is taking an oral B12 supplement over the counter for a bit an option, just to see if that helps? Or did supplements not work for you?
posted by needs more cowbell at 10:26 AM on June 25, 2021 [2 favorites]
Is taking an oral B12 supplement over the counter for a bit an option, just to see if that helps? Or did supplements not work for you?
posted by needs more cowbell at 10:26 AM on June 25, 2021 [2 favorites]
That B12 level sounds a bit concerning to my mind (as someone who has pernicious anemia, a B12 deficiency) It is within the "normal" range, but it is low normal. If I were you I would consider a supplement. My deficiency is managed well (and this was by my doctor's instruction) by taking a 1000 mcg vitamin B12 pill daily.
I will agree that, like needs more cowbell, I also get fatigue from that generation of antihistamines.
posted by gudrun at 10:33 AM on June 25, 2021
I will agree that, like needs more cowbell, I also get fatigue from that generation of antihistamines.
posted by gudrun at 10:33 AM on June 25, 2021
You may want to consider reframing the question from "What is the single physical cause of my fatigue?" to "What can I do to improve my fatigue?". You have a lot of the autoimmune-type symptoms that often crop up for those of us on the spectrum, and those likely contribute to your fatigue as well as other issues. It's probably not that your "fatigue is a mental health problem", it's more likely that both physical and psychological issues contribute to the fatigue and it may be impossible to pinpoint a specific issue because it's probably a complex thing where multiple causes interact with each other. Personally, I cluster mood, energy, and vague pain symptoms into the "mental/physical" category, which are very different from purely mental things like cognitive problems.
From what you've written, there are definitely things you can try on the physical side to help. The one that stands out to me is that you don't mention trying any digestion/gut health solutions and that was the key for me. A regular set of probiotics are the most important thing that keeps from being fatigued so that is the first thing I would try, along with maybe some prebiotics (I use a glutamine supplement) to keep your gut going. I don't have any specific strain recommendations as I don't know what's available over in the UK but I would probably start with the basic "digestion mix" at your local store.
The other thing that helped my fatigue personally when it was it's worse was light therapy, although the Vitamin D supplements probably accomplish the same thing. Some combination of switching antidepressants (on Wellbutrin now) and learning to meditate definitely helped me as well. All I know is that I used to be very fatigued, and that is basically never a problem for me now. I don't know what will work for you, but I'm sure there's something that will help. Those of us on the spectrum seem to have a "fragile" homeostasis in several ways, but it seems to differ heavily per person so there's no universal solution. Good luck!
posted by JZig at 10:45 AM on June 25, 2021 [4 favorites]
From what you've written, there are definitely things you can try on the physical side to help. The one that stands out to me is that you don't mention trying any digestion/gut health solutions and that was the key for me. A regular set of probiotics are the most important thing that keeps from being fatigued so that is the first thing I would try, along with maybe some prebiotics (I use a glutamine supplement) to keep your gut going. I don't have any specific strain recommendations as I don't know what's available over in the UK but I would probably start with the basic "digestion mix" at your local store.
The other thing that helped my fatigue personally when it was it's worse was light therapy, although the Vitamin D supplements probably accomplish the same thing. Some combination of switching antidepressants (on Wellbutrin now) and learning to meditate definitely helped me as well. All I know is that I used to be very fatigued, and that is basically never a problem for me now. I don't know what will work for you, but I'm sure there's something that will help. Those of us on the spectrum seem to have a "fragile" homeostasis in several ways, but it seems to differ heavily per person so there's no universal solution. Good luck!
posted by JZig at 10:45 AM on June 25, 2021 [4 favorites]
I've had some similar issues (fatigue, anemic, low ferritin which I managed to get into the normal range through diet and supplements, borderline low B12). I'm also mostly vegetarian. I haven't had any follow up bloodwork but on the original test, the B12 level was 327, the cut off for deficiency was 200, and the doctor didn't instruct me to take supplements. But there was a note on the paperwork that 200-400 is somewhat low (can't remember how it was worded). Anyway I started B12 supplements and it does seem like they have helped some(actually rotating a B12 supplement with a B-complex one).I still get really tired some afternoons but it's more like 2 days a week than 6 days a week now.
posted by dogwalker3 at 10:45 AM on June 25, 2021
posted by dogwalker3 at 10:45 AM on June 25, 2021
Have you ever been evaluated by a rheumatologist? Psoriatic arthritis causes extreme fatigue for me.
posted by The Underpants Monster at 11:30 AM on June 25, 2021 [3 favorites]
posted by The Underpants Monster at 11:30 AM on June 25, 2021 [3 favorites]
I don't have an answer but wanted to throw out a few peripheral thoughts.
Low B12 can be due to malabsorption, in which case injections are needed, or due to low dietary intake (apparently rather common in vegetarians, including me), in which case B12 tablets are all that you need to remedy it. I've been taking 1000 mcg (micrograms) of B12 three days a week for something like 5 years now. B12 is important in the formation of red blood cells and my GP clued in by looking at my blood-test results (levels of something maybe iron-related which I now can't remember). Anyway, B12 supplementation is something you could do yourself, though it would probably take of order 3 months before you felt any effects.
The mental health evaluation may be an opportunity to get your C-PTSD detected and treated. It might be worth leaning into that, even if that is not the primary cause of your fatigue.
Finally it could "just" be autistic burnout. I've been going through that for the past year-plus, and incredible levels of exhaustion (both mental and physical) have been part of it for me. It could be possible that the anaemia episode (followed shortly by the pandemic, and then all the stress of dealing with the medical system) tipped you over an edge that you'd already been close to. I think that mental and emotional fatigue (in addition to physical) is a big part of autistic burnout, though, so please judge this idea based on your own internal data. I saw a GP for ordinary burnout about 2 months ago and he told me to "take some significant time off and get my mind away from work stress" (two weeks being apparently not nearly enough) and "get significant exercise, including cardio" (sorry...).
posted by heatherlogan at 1:40 PM on June 25, 2021 [2 favorites]
Low B12 can be due to malabsorption, in which case injections are needed, or due to low dietary intake (apparently rather common in vegetarians, including me), in which case B12 tablets are all that you need to remedy it. I've been taking 1000 mcg (micrograms) of B12 three days a week for something like 5 years now. B12 is important in the formation of red blood cells and my GP clued in by looking at my blood-test results (levels of something maybe iron-related which I now can't remember). Anyway, B12 supplementation is something you could do yourself, though it would probably take of order 3 months before you felt any effects.
The mental health evaluation may be an opportunity to get your C-PTSD detected and treated. It might be worth leaning into that, even if that is not the primary cause of your fatigue.
Finally it could "just" be autistic burnout. I've been going through that for the past year-plus, and incredible levels of exhaustion (both mental and physical) have been part of it for me. It could be possible that the anaemia episode (followed shortly by the pandemic, and then all the stress of dealing with the medical system) tipped you over an edge that you'd already been close to. I think that mental and emotional fatigue (in addition to physical) is a big part of autistic burnout, though, so please judge this idea based on your own internal data. I saw a GP for ordinary burnout about 2 months ago and he told me to "take some significant time off and get my mind away from work stress" (two weeks being apparently not nearly enough) and "get significant exercise, including cardio" (sorry...).
posted by heatherlogan at 1:40 PM on June 25, 2021 [2 favorites]
When I had anemia it was due to undiagnosed. Celiac disease, which can certainly make you feel like crap in many ways. I just skimmed your post and it doesn't seem like you’ve been checked for that.
posted by ChristineSings at 3:01 PM on June 25, 2021
posted by ChristineSings at 3:01 PM on June 25, 2021
Also here to suggest celiac/coeliac disease as a possible culprit. It’s not uncommon to have no obvious gastrointestinal symptoms. Fatigue and low vitamin/mineral labs despite adequate intake are definitely possible issues. In my practice we recommend against pursuing a gluten free diet until you’ve been tested (with an intestinal biopsy, because a GF diet can make the biopsy come back falsely negative). However, if you’re not sure you’d actually be able to get that testing, it would be reasonable to go GF and see if it helps. Unfortunately I would expect it to take weeks-to-months before feeling a difference.
posted by obfuscation at 4:27 PM on June 25, 2021
posted by obfuscation at 4:27 PM on June 25, 2021
Maybe a long shot, but ceterzine makes me tired too. And maybe it's all in my head (doctors look at me like I'm crazy if I've mentioned it) but I feel like if I take it daily all the time then I get depressed.
posted by ghost phoneme at 5:40 PM on June 25, 2021
posted by ghost phoneme at 5:40 PM on June 25, 2021
The fact that you have hidradenitis suppurativa with recurring boils makes me think you could have a chronic bacterial infection, which might explain your borderline iron values despite supplementation, because all human bacterial pathogens except the Lyme spirochete require iron to thrive, and your body can respond to such infections by sequestering iron:
Your experiences with the NHS seem to be distressingly common, and there appears to be a big push on right now to consign anyone with Medically Unexplained Symptoms (MUS) to the Biopsychosocial wing without formalities of much real testing -- because tests are expensive. But people with ME (CFS in the US) are fighting back hard, now reinforced by people with Long Covid who are facing similar missing treatment. Virology Blog is a good place to find science based opposition to the NHS, and there's a post today mentioning various patient groups you might be interested in.
posted by jamjam at 7:48 PM on June 25, 2021 [2 favorites]
Systemic infection or inflammation causes a decrease in intestinal iron absorption and impairs the release of recycled iron from macrophages. Decreased availability of iron may deny this essential element to invading pathogens and may inhibit their multiplication and other metabolic processes but also results in anemia of chronic disease.I'm also concerned after the GP call I just had that I'm one more appointment away from having "huge fuckin' hypochondriac" permanently stamped on my medical records, and that this is only going to make the system take me even less seriously than it already takes me.
Your experiences with the NHS seem to be distressingly common, and there appears to be a big push on right now to consign anyone with Medically Unexplained Symptoms (MUS) to the Biopsychosocial wing without formalities of much real testing -- because tests are expensive. But people with ME (CFS in the US) are fighting back hard, now reinforced by people with Long Covid who are facing similar missing treatment. Virology Blog is a good place to find science based opposition to the NHS, and there's a post today mentioning various patient groups you might be interested in.
posted by jamjam at 7:48 PM on June 25, 2021 [2 favorites]
I was also going to suggest Celiac disease, but besides that, other food sensitivities can cause fatigue. The acid reflux and low iron are what brought this to mind, as I have dealt with both. I think psoriasis can be related to food allergies as well. What helps me is a low-inflammation diet, which is unfortunately somewhat more challenging, though still possible, for a vegetarian (sorry). You could consider an elimination diet (where you eat a limited diet for a short time to identify trigger foods) or keeping a journal of what you eat along with symptoms.
posted by Comet Bug at 12:33 PM on June 26, 2021
posted by Comet Bug at 12:33 PM on June 26, 2021
Since several people said B12, I just want to point out that there are different types of B12 and some people respond to one type better than others! If you go that route, I would read up on the types first, then find a supplement that has a good mix.
posted by tofu_crouton at 7:49 AM on June 27, 2021
posted by tofu_crouton at 7:49 AM on June 27, 2021
I'm going to suggest the Curable app. I know you don't want to go down the mental route. I finally decided to give Curable a try because I was so infuriated with the very idea of it that I kept googling it to debunk it and kept finding stories of people's whose lives had been changed by it.
It is designed for addressing chronic pain but many many people with fatigue like you describe have been helped by it.
The problem I needed to address was knee pain. It was clearly not "all in my head", my knee is visibly fucked up, to the naked eye and in x-rays. However the surgery I'd had left me in the same amount of pain as I was in before the surgery. For several tedious reasons, medical and financial, there was no way I could have more surgery to try and get a better result for at least a year and so I was trying to find anything to get me through that year.
Even though my knee is still just as physically fucked up and I will probably eventually get a knee replacement (the surgery I was waiting a year for) for now I experience a pretty mild amount of pain, work on my feet 8 hours a day and regularly hike miles as my main hobby.
Apparently there's a complicated system in your brain that "decides" what is an appropriate amount of pain (or fatigue) for you to experience and sometimes the system is giving your more pain (or fatigue) than needed for the actual physical situation but once the cycle begins, well, it's a vicious cycle.
The Curable app through various exercises can help you get in there and interrupt the cycle.
They also have a free podcast
and I would especially recommend the two episodes with the 3 app founders in which they describe their chronic illness journeys called "Pain is the Worst"
I'm wishing you all the best and hope whatever you do you find a way out of this health (and health system) problem. This internet stranger is pulling for you!
posted by Jenny'sCricket at 2:16 AM on June 28, 2021
It is designed for addressing chronic pain but many many people with fatigue like you describe have been helped by it.
The problem I needed to address was knee pain. It was clearly not "all in my head", my knee is visibly fucked up, to the naked eye and in x-rays. However the surgery I'd had left me in the same amount of pain as I was in before the surgery. For several tedious reasons, medical and financial, there was no way I could have more surgery to try and get a better result for at least a year and so I was trying to find anything to get me through that year.
Even though my knee is still just as physically fucked up and I will probably eventually get a knee replacement (the surgery I was waiting a year for) for now I experience a pretty mild amount of pain, work on my feet 8 hours a day and regularly hike miles as my main hobby.
Apparently there's a complicated system in your brain that "decides" what is an appropriate amount of pain (or fatigue) for you to experience and sometimes the system is giving your more pain (or fatigue) than needed for the actual physical situation but once the cycle begins, well, it's a vicious cycle.
The Curable app through various exercises can help you get in there and interrupt the cycle.
They also have a free podcast
and I would especially recommend the two episodes with the 3 app founders in which they describe their chronic illness journeys called "Pain is the Worst"
I'm wishing you all the best and hope whatever you do you find a way out of this health (and health system) problem. This internet stranger is pulling for you!
posted by Jenny'sCricket at 2:16 AM on June 28, 2021
oh darn, I did the links wrong
Curable website
Curable podcast
posted by Jenny'sCricket at 2:23 AM on June 28, 2021
Curable website
Curable podcast
posted by Jenny'sCricket at 2:23 AM on June 28, 2021
Response by poster: Thank you all for these suggestions, it's amazing (in both the good and the bad way) that a handful of random strangers on the internet can be more helpful and compassionate than the people who literally get paid to help me out with this stuff.
I was tested for coeliac back in 2014 when I first began experiencing IBS-like symptoms, and that test was negative. I eat wheat most days and haven't noticed ill effects from it (compared to dairy, which I'm increasingly unable to tolerate and can definitely feel the effects of after consumption).
I'm going to start by making some changes that are within my control, like getting back into regular B12 supplementation (I was also hoping to stop taking cetirizine temporarily to see if that helped, but by day 2 of not taking it I had horrible allergy symptoms including itching all over, and had to start taking it again, but in the longer term I'll look into different options for allergy management) and trying to further increase my activity levels if I can do that without setbacks.
I'm also thinking more about what I can do in the near term to deal with stress - as well as living through the pandemic and dealing with crappier health than I'd like, I've also had a couple of bereavements (family friends) in the last year, work has been consistently stressful (I've bounced from pandemic emergency business continuity response to an internal reorg to an intense project to figure out what flexible working will look like post-pandemic, and also recently had to make a complaint against our CEO, which has definitely been stressful), I injured my ankle a month ago and I'm still experiencing pain & instability from the injury etc. I generally expect a very high standard of consistent achievement from myself regardless of any mitigating circumstances (thanks, abusive childhood in which compulsive overachievement was the only behaviour that guaranteed any positive attention!), but just reading back that list makes me feel tired, and maybe there's also some mileage in the idea that this is a normal amount of fatigue to be experiencing in light of all of that stuff going on by normal human standards, rather than the robotic standards I expect from myself. Long story short, I'm incredibly glad I'm back in therapy and have an appointment later today.
I'm also open to pursuing some kind of private medical option, but I feel like I need at least a bit of down time to recover from this experience before willingly flinging myself back into the uncaring maw of medicine.
posted by terretu at 2:55 AM on June 28, 2021 [2 favorites]
I was tested for coeliac back in 2014 when I first began experiencing IBS-like symptoms, and that test was negative. I eat wheat most days and haven't noticed ill effects from it (compared to dairy, which I'm increasingly unable to tolerate and can definitely feel the effects of after consumption).
I'm going to start by making some changes that are within my control, like getting back into regular B12 supplementation (I was also hoping to stop taking cetirizine temporarily to see if that helped, but by day 2 of not taking it I had horrible allergy symptoms including itching all over, and had to start taking it again, but in the longer term I'll look into different options for allergy management) and trying to further increase my activity levels if I can do that without setbacks.
I'm also thinking more about what I can do in the near term to deal with stress - as well as living through the pandemic and dealing with crappier health than I'd like, I've also had a couple of bereavements (family friends) in the last year, work has been consistently stressful (I've bounced from pandemic emergency business continuity response to an internal reorg to an intense project to figure out what flexible working will look like post-pandemic, and also recently had to make a complaint against our CEO, which has definitely been stressful), I injured my ankle a month ago and I'm still experiencing pain & instability from the injury etc. I generally expect a very high standard of consistent achievement from myself regardless of any mitigating circumstances (thanks, abusive childhood in which compulsive overachievement was the only behaviour that guaranteed any positive attention!), but just reading back that list makes me feel tired, and maybe there's also some mileage in the idea that this is a normal amount of fatigue to be experiencing in light of all of that stuff going on by normal human standards, rather than the robotic standards I expect from myself. Long story short, I'm incredibly glad I'm back in therapy and have an appointment later today.
I'm also open to pursuing some kind of private medical option, but I feel like I need at least a bit of down time to recover from this experience before willingly flinging myself back into the uncaring maw of medicine.
posted by terretu at 2:55 AM on June 28, 2021 [2 favorites]
What jumped out to me most is the complex PTSD + early 30s + increasingly exhausted. It might be worth looking into the impacts of complex trauma on your physical health - I'd recommend The Body Keeps The Score. That's to say i'd suggest I think your exhaustion is not exactly physical but not entirely mental because the body "takes on" anything that can't be dealt with/processed mentally. Most people with CPTSD don't start to feel the physical impacts til early 30s at least. Feel free to memail me if you'd like to chat!
posted by london explorer girl at 4:46 AM on June 28, 2021 [1 favorite]
posted by london explorer girl at 4:46 AM on June 28, 2021 [1 favorite]
Many possibilities, but I’ll just throw in my anecdata: I suffered almost two years of progressively worsening fatigue, sleeping 12-16 hours a night and still exhausted, plus heart palpitations and tachycardia, doctors basically gave up - I stopped taking Zyrtec/cetirizine and it all cleared up within a month. I now take Allegra and Nasicort, along with some other asthma and allergy meds (turns out I am allergic to pretty much everything), and my life is 1000% better. Most people do fine with Cetirizine so that may not be your issue but it’s worth changing it up to see for sure.
posted by MartialParts at 8:17 AM on June 28, 2021
posted by MartialParts at 8:17 AM on June 28, 2021
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posted by metasarah at 10:09 AM on June 25, 2021 [7 favorites]