Anaemia self-care
January 20, 2020 4:09 AM   Subscribe

I'm experiencing anaemia-related fatigue at the moment and I have no idea if it's the kind of fatigue where resting more will help me feel less tired, or if the only thing that's going to reduce the fatigue is resolving the anaemia.

I was diagnosed with anaemia last November, after experiencing a bunch of symptoms (angular cheilitis, significant fatigue, brain fog, breathlessness & mild dizziness while doing ordinary activities like laundry/showering, cold hands & feet even when the ambient temperature is warm enough). I don't know what's causing it or what kind of anaemia it is, but I'm following up on this with my doctor at the moment (I'm 30, AFAB non-binary, but I don't menstruate and haven't done so since 2013, which is the usual cause of anaemia in someone my age with female-coded physiology).

I've been taking 400mg ferrous sulfate every day since late November, and it's helped a bit (the angular cheilitis is less severe but still present; the breathlessness while doing normal stuff is better) but I still feel really exhausted and the brain fog is causing me more issues now than it was before Christmas. I'm wondering if this is the kind of fatigue that will respond at least a bit if I try some short-term lifestyle modifications (resting/sleeping more, doing less, taking time off work or working from home more often), or if the only thing that will really help is getting the anaemia under control.

I find resting difficult overall and often mentally misclassify how "restful" my downtime actually is - my biggest non-work hobby activity at the moment is editing a long piece of fiction, which in practice is as much "work" as my paid employment is, and I'm spending a decent chunk of my free time doing that. I could rest more but I'd need to be mindful about actually doing it.

But if resting more and doing less isn't actually going to help with the fatigue all that much, I'd rather knuckle through and carry on doing as much "normal" activity as I can; I'd hate to scale back what I'm doing even further, when I feel I've already had to scale back what I'm doing to deal with the anaemia fatigue, only to find that doing so doesn't really change how I feel. In short, if more rest will actually help then I'm willing to try it, but if I'm going to feel crappy either way then I'd rather feel crappy while getting stuff done. Does anyone have experience of whether resting more actually helps with this kind of fatigue?

I'm explicitly not looking for medical/dietary advice - I only want advice about fatigue management when dealing with anaemia, not that I should be cooking with cast iron or eating more tofu etc.
posted by terretu to Health & Fitness (19 answers total) 1 user marked this as a favorite
not resting will exhaust you... but resting will not make you feel much better until you are not anemic. However, perhaps having had anemia has wiped you out and even though your levels are higher you would do well to rest and have early nights until you feel better. I’ve had anemia and feel much better after 2 months of iron supplements... but if it happens to me again I think I’ll be going straight down the IV route.
posted by catspajammies at 4:32 AM on January 20 [1 favorite]

In my case resting really didn't help much - the issue was my brain and body not getting the oxygen it needed. Exercise helped a bit, getting the depleted blood flowing faster, but I had to be very careful because I had a couple of bad falls (bike and going up crowded stairs). Sleep, definitely, and drinking a hell of a lot of fluid to get my blood pressure back up - in my case it was the usual female blood loss story.
posted by I claim sanctuary at 4:44 AM on January 20

When I've been anemic the only thing that had helped is fixing the anemia. Do tell your doctor how miserable you are, and that you are having trouble.

I don't think true lying in bed and resting is really going to help . Your low on one of the fundamental things that make bodies work, no amount of rest is going to make that better. Your tolerance of activity is likely different because your exhaustion isn't just a feeling your whole body is legitimately low on something it needs.
posted by AlexiaSky at 4:50 AM on January 20

I've been going through a bout of iron-deficiency anemia myself for several months now (mine is related to having chronic kidney disease, so this is not my first rodeo). My understanding is that most if not all of the fatigue stems from your body having to work harder to get oxygenated blood pumped throughout it because iron is important to that process. So yes, resting more helps, but as catspajammies said, it won't be very refreshing until your iron levels are high enough.

I know you don't want treatment advice, but I'm glad you're following up with your doctor - sometimes a change of supplement helps. (I am waiting for insurance approval for an iron infusion at the moment because my hemoglobin hasn't increased much after a few months of oral supplements.)
posted by camyram at 4:50 AM on January 20

Bed rest is really boring. Editing takes brain power and can be exhausting though. On bad days, I aim to do a short focused list of must do when my brain is alert then rest, do something calm and relaxed like nap, read a cozy mystery, tidy a room slowly, knit something simple, then when my brain goes back to sharp, another small burst. Basically it's like very depleted health points and the world's crappiest dice rolls. Bed rest is so so boring but you need a aort of simple low brain activity to zone out with sometimes.

I actually found it helpful due to walking the dog to have a consistent daily measurement of how far i could move before being exhausted. I went from 100m to 2km over a few weeks, and now when I can't make that distance, i know something it's going wrong again. Can you incorporate a regular short EASY exercise routine that helps you check your basic health level?
posted by dorothyisunderwood at 5:48 AM on January 20

I had severe anemia and struggled with the same frustration.
I found that resting physically was necessary, but not enough. I needed the mental stimulation of activities I didn't have the energy to do. I had to learn rest mentally as well. Learning to meditate helped a lot. So did learning to strengthen my ability to conjure up calming and pleasing visualisations. Rejecting the pressure to be constantly "productive" in a measurable way. Valuing the moment I am in, rather than constantly worrying about the past and future. Listening to podcasts and books that I find inspiring and hopeful. Improving my sleep habits.
Our world encourages us to develop mental habits that are every bit as exhausting as being physically active.
It takes time to recover from anemia and that can be frustrating, which can create a vicious cycle. I found I had to accept my limitations, stop struggling and stop trying to force myself better.
posted by Zumbador at 6:11 AM on January 20 [6 favorites]

Yes you should be working hard to fix the anemia. You should be going back to your doctor to see what else they can do because there are other causes of anemia than just not GETTING enough iron. If you have a problem with iron absorption, adding iron to your diet won't help, for example.

I tend to be borderline within range but have been anemic for periods, and honestly an iron-rich diet helped more than iron supplements because iron supplements can be hard to break down/absorb. I also had success adding zinc supplements but I forget what the logic was.
posted by DoubleLune at 6:36 AM on January 20

I've had severe anemia, diagnosed when I was 16. For me, ferrous sulfate was practically useless, at one point I was taking like 2 pills (325mg) three times a day. At one point, I felt so bad that I ended up needing and getting an iron infusion and then started on a regular regimen of good iron supplements. Today, I take 2 x 150mg of Polysaccharide Iron and 1 X Ferrochel 27mg (chelated iron) daily and I have zero problems now and no issues with constipation. Both those you can get online, but definitely go a see a doctor, and I will say it wasn't until I saw a hematologist that things really turned around for me.

Good luck!
posted by SoulOnIce at 6:38 AM on January 20

I’m anemic. Rest doesn’t make me feel better.

Oral iron supplements make me feel slightly better. Palafer Prenatal is the best I’ve tried, of many. It’s ferrous fumarate + vitamin C, which helps iron absorption, + folic acid, which you don’t need if you’re not pregnant but it won’t hurt you, and the way they formulated it seems to work well for queasy pregnant people- it’s easier on the digestion than any other kind of iron supplement I’ve tried.

Best of all are occasional iron infusions (Iron Sucrose, delivered by IV). They make me feel like a million bucks! Truly worth investigating.
posted by nouvelle-personne at 6:53 AM on January 20 [2 favorites]

I'm working with the NHS here, so getting any medical attention at all is kind of challenging, let alone advocating for oneself or trying to push for different treatment. I've also found a private clinic in a nearby city that offers iron infusions at a price that I can definitely afford, and I'm tempted to pursue this if I can get the necessary bloodwork records together.
posted by terretu at 6:56 AM on January 20

When I am anemic (which I probably am right now, tbh, and your post has reminded me that it's probably time to get my iron levels checked) I find it very important to be well-rested and that sleeping more is easy, but that it doesn't significantly improve the productivity or wakefulness of my non-sleeping hours. If I am anemic and not sleeping 8 hours a night, I am just useless to the world, but sleeping 10 or 12 or more doesn't help, and napping can even making things worse because then I add nap fogginess on top of my regular fogginess.
posted by jacquilynne at 6:57 AM on January 20

I'm anemic but I also have low blood pressure, which makes the anemia symptoms worse. If you have dizziness when you stand up suddenly (classic symptom) you might also be dealing with this. My doctor said there isn't really a medical treatment for it, but drinking tons of water and increasing salt and potassium in my diet has helped a lot.

I agree that resting doesn't really help with anemia fatigue, it makes life more bearable but resting one day doesn't increase the energy available the next day. It's like, rather than having a regular-sized battery that's just drained, you have low-capacity battery and you can't charge it past the maximum.

Light but consistent exercise (yoga, slow jogging), deep breathing practices, and getting plenty of fresh air have also helped me. Anything to increase the amount of oxygen going into your lungs, so at least you are maximizing that input.
posted by 100kb at 10:06 AM on January 20 [1 favorite]

oh my god absolutely get the infusions if you can, they were the only thing that kept me conscious until i could have my hysterectomy, aka the source of all evils in my body at that time. no amount of resting or iron-rich foods or whatever ever made a difference for me, although obviously my circumstances were very different wrt the source of the anemia.
posted by poffin boffin at 10:43 AM on January 20

Your symptoms suggest that your hemoglobin is quite low, and you are finding it difficult to live with an activity level that is minimally satisfying. Do you have a copy of your blood count? At the very least you can compare between tests to see if your hemoglobin level is increasing as you take iron supplementation. It seems to me that this is a pretty urgent issue, and important to alleviate as quickly as possible.

As others have said, not all anemia is due to iron deficiency. I would suggest talking to your doctor directly about the reason you are anemic, and if you are not satisfied with the explanation please ask for a referral to a hematologist. If it is an absorption problem it will probably not matter how much iron you ingest, and oral iron can have problematic side effects, like abdominal pain and nausea (which I get whenever I start taking oral iron) and constipation. Iron infusions will eliminate this and tend to improve your symptoms much more quickly than oral supplements, but again, that is only adding iron, not solving the underlying cause of your anemia.
There is also the possibility that you are "losing" blood, and this is generally through the GI track. Blood in the stool is generally noticed because the iron in excreted blood causes the stool to turn black, but it you are taking oral iron that smear of stool on a card testing that is done in doctor's offices will not distinguish between oral iron and bleeding. I will say, though, that anemia severe enough to cause the symptoms you describe does not generally occur with occasional minor GI bleeding, as from diverticulitis. I mention the bleeding possibility because hemoglobin levels vary dramatically either because blood is not being formed at the correct rate in the bone marrow (which needs iron to make hemoglobin, the oxygen-binding part of the blood cell. This is why you are short of breath on exertion - not enough hemoglobin) or it is being somehow lost. The kidneys participate because they excrete a substance that supports blood formation. It's like a balance sheet, and either side can be at fault.

Please dig down for the reasons you are anemic. Though many times iron deficiency IS the cause, there are a number of other possible reasons that definitely require medical follow-up.
Best of luck to you!
posted by citygirl at 11:07 AM on January 20

I have iron-deficiency anemia, in fact am in the middle of a series of IV infusions right now, and have been dealing with this for 20+ years. Resting more won't help because the problem is lack of oxygen, not lack of rest. But pushing yourself too hard will end in utter exhaustion. You just have to find a middle road of seeing what you can squeeze out of yourself without making things worse. Heartily recommend pushing for IV iron.
posted by HotToddy at 11:59 AM on January 20

IANY hematologist but... if your symptoms are as severe as you state, you may really have benefit from a course of IV iron if that’s an option for you. It takes months - sometimes longer - for patients to fully replace a major iron deficit with oral iron, because there is a limit to how much iron your gut can absorb. Depending on the formulation, an iron deficit can be reversed in 1 or 2 doses.

The solution to your fatigue is going to be replacing your iron, but you also MUST talk to your provider about an evaluation to see why you are anemic. At 30 years and amenorrheic, you have (as you said) eliminated the most likely culprit for your anemia. I am happy to talk to you in more detail - PM me if you’d like.
posted by honeybee413 at 8:11 PM on January 20

I just remembered something that might be important: a friend of mine had severe anemia and her doctor blamed it on menstruation. It didn't get better after supplements, she got a 2nd opinion, turns out she had a bleeding ulcer. Untreated ulcers can be dangerous so definitely look into that if you can't find a cause for the anemia.
posted by 100kb at 8:56 PM on January 20

A coworker reminded me about a remote GP program we have with our work insurance, and I managed to get a phone call yesterday and now have a haematology referral for next week (which will help me work through the causes as well as hopefully getting an infusion). Thanks for everyone's responses!
posted by terretu at 5:20 AM on January 24 [3 favorites]

Bonus update in case anyone is interested: I saw the haematologist and got a bunch of extra bloodwork done. By that point my haemoglobin was back in the normal range (ferritin on the low end of normal) but it also showed that my B12 levels were low. I've been taking a B12 supplement every day for the last week and I got a B12 shot today, and I'm already feeling a lot better.
posted by terretu at 7:23 AM on February 24 [2 favorites]

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