r/POTS • u/rockpigeonfan POTS • Aug 14 '26
Question Do you experience ‘bricks tied to me’ fatigue?
Hey everyone. What it says on the tin. I was recently diagnosed with POTS and I get a lot of fatigue/tiredness with it, however, I am finding that the day after I try do something more active I am experiencing a worse kind of fatigue that feels like having heavy bricks tied to me, and my muscles become very weak. Is this a common POTS thing? I’ve only really seen people say ‘fatigue’ generally so I’m not sure exactly what that encompasses.
37
u/Istoh Aug 14 '26
Yes. But I describe it as "Waterpark Tired" when people without a chronic illness ask me about it.
I say, "Have you ever been to a water park? Or gone swimming all day in the middle of summer? You know how you feel when you finally stop, and you get home and you realize just how tired you actually are now that the fun is over? That's me. That tired is what my fatigue feels like. And it feels like that almost every day. You can nap after the water park and feel better. My fatigue doesn't ever fully go away even if I sleep."
It's a great way of the point across because most people have had that "water park" experience, and remember what that level of exhaustion feels like.
12
u/Prestigious_Turn577 Aug 14 '26
This describes it perfectly! Minus the satisfied feeling of having had a fun active day. Something about waterpark tired or beach tired was always so relaxing.
9
u/annarosebanana89 Aug 14 '26
This is a great description! Especially how when you are having a blast at the water park you know on some level that you are tired and gunna be absolutely wiped out later, but you are able to keep going due to adrenaline and dopamine. And even though you know it's coming, when the the exhaustion hits it's always a little surprising how much it really effects you.
I think it's hard for PPL on the outside to see us able to push ourselves for some things but not for other things.
For example, I've been thinking about Ren Fest and actually going this year and prepping for what accommodations I'm gunna need to make it work and stuff, for a month already. The day I'm going is still a month out. My in laws hear about me having one day of fun, because I'm looking forward to something for once and they immediately wonder why I don't have a job "even if it's just at the gas station or something, they'd probably let you do only 30 hrs a week if you need!"
Frankly, any money I'd make is not worth the additional stress on our whole family. I'm a stay at home mom which I'm doing good at, despite my disabilities. I also have the responsibility of managing and maintaining the majority of the interior of our home, which I'm fucking failing at (school starts soon!) So my husband already has to take on a lot of the house, like mopping and scrubbing bathrooms, because I am unable, in addition to whatever I am unable to do just because it is too much.
I have to make daily decisions like "should I take my daughter to the park today or should I shower?" Because I can't do both. But I'm lazy for not "just working 30 hr weeks at the gas station while my daughter is in school."
4
u/Istoh Aug 14 '26
Your inlaws sound like mine. I do work (40+hrs a week), but they get on my case about needing a wheelchair for long outings or being hesitant to buy an apartment with a walk up, etc.
3
u/annarosebanana89 Aug 14 '26
Exactly! I dread the day they find out I regularly use electric carts if I go into a store and that I use wheelchairs at zoos, malls, etc... they still think I need to give up my seat for a 50 yr old man who just walked in that works a physical job. Um... No... No I will not.
2
u/Istoh Aug 14 '26
I sit in the handicap section if the train/bus because then if I pass out the driver knows I'm disabled.
2
2
2
u/rockpigeonfan POTS Aug 26 '26
This is a great way of explaining it! That’s exactly how it feels. Like you’ve just got home after a really exhausting day but you haven’t actually done the exertion necessary to feel like that. Thanks for sharing.
18
u/Interesting_Car8858 POTS Aug 14 '26
Yes!! I describe it as it being like bricks weighing my legs down usually (though it affects other parts of my body too, but I feel it the most in my legs)
15
u/pretty_handsome_17 Aug 14 '26
Yes yes yes. I also call it my 20lbs backpack. Also like I’m wearing ankle weights sometimes.
20
u/blackheartrhinohide Aug 14 '26 edited Aug 14 '26
Look into PEM (Post Exertional Malaise) associated with ME/CFS, a lot of folks with POTS also have it and the type of PEM is the defining feature. If your symptoms align with that, be very careful with overexerting because it can worsen your baseline over time 😭 because the energy envelope changes day to day it makes it especially challenging to do so often leading to flares, crashes, etc.
Also yes I get this and its very bad after very little exertion. I have described it to others as the fatigue that comes with the flu. That just cant get out of bed, your eyes feel better closed, and every muscle and joint aches feeling.
2
u/Independent_Gap9280 Aug 15 '26 edited Aug 15 '26
I was going to also say it sounds a bit like PEM, but I recently realised my night medication has a rebound effect during the day. I have Clonidine at night to calm my system but it makes my daily fatigue and brain fog even worse. I didn’t realise this until I googled why I was cold at night even with extra blankets and external heat source. It mentioned calming the system too much (the cold) and possible rebound during the day of fatigue and brain fog. I’m in Australia and it’s winter so I don’t want to lay under several layers with my furkids to get warm but still be cold for 3 or 4 hours.
edit for typos
1
u/rockpigeonfan POTS Aug 26 '26
Sorry to reply so late to this! But this is interesting. I have a friend with ME/CFS and they describe this too. I’m not certain that my fatigue aligns with PEM but I’m definitely going to look into it. Mine is kind of weird because sometimes it starts right after the exertion and sometimes not until the following day. But anyway, thank you for the reply!
1
8
7
u/_nickittynic Aug 14 '26
Very much yes.
It turns out my B12 and other nutrients are super low and the death fatigue is improving a little with supplements. (Probably malabsorption from chronic diarrhea from dysautonomia. But it took years and years for any dr to think of checking.) Might be worth getting checked out if you haven't already
14
u/realwhalefish Aug 14 '26 edited Aug 14 '26
This is called Post Exertional Malaise (PEM). It's not a recognized POTS symptom but anecdotally I think lots of us get it. My best guess is that it's because of the increased orthostatic stress of exercising on our bodies. I did 6 months of the CHOP protocol (forced to stop due to an injury) and it has helped with this! So did starting a beta blocker.
16
u/hazelemons Aug 14 '26
PEM is a symptom of ME/CFS and you absolutely should not exercise at all if you have ME, it will only make you worse
3
u/frogisdancing Aug 14 '26
Did you get really bad fatigue when starting the chops protocol? I tried it a couple of times for just a week or two each time, and each time I crashed so hard afterward and my baseline went down so I’m afraid to try it again. Interestingly, when the weather is cool and dry and I’m not flared, I’m able to go walking for a bit. But for some reason recumbent exercise really takes it out of me.
3
u/realwhalefish Aug 14 '26
YES the 5-6 weeks were so hard. It got better from there. This was also my 2nd attempt at it, I stopped the first time after about 2.5 months because I just wasn't keeping up.
5
u/Melon_Heart_Styles Aug 14 '26
So PEM isn't just fatigue, there are other symptoms as well. It also isn't a symptom of pots. The r/cfs sub has a lot of good info about PEM. We in the chronic illness community need to be careful about mislabeling symptoms and whatnot.
-1
u/lass20987 Aug 14 '26
PEM can be caused by Lyme and also Covid
0
u/Melon_Heart_Styles Aug 14 '26
I've seen some people argue that it is only a symptom of me/cfs (it's considered the hallmark symptom) but I'm skeptical. However, as I said above, above, it is not considered a symptom of pots.
I don't know much about Lyme disease, so that's interesting. I am aware that long covid can cause pem, I think the jury is still out whether that type of long covid is actually me/cfs caused by covid or an entirely separate illness.
1
u/eclectricinity Aug 15 '26
How I describe my leg (mild-medium POTS) soreness and tiredness is if you did a 10k every day and never took a rest day. Oddly the compression leggings I wear are designed for just that.
5
5
u/vario_ Aug 14 '26
Yes, this is one of my worst POTS symptoms. I say it feels like someone is pulling my limbs to the floor.
6
u/Prestigious_Turn577 Aug 14 '26
Yes! It feels like I wake up the day after exertion and my body is 10x heavier to drag up the stairs. Like it takes much more effort through my hips to step. I do have hEDS also though.
It’s a distinctly different feeling from muscle soreness, too.
3
u/snozberry_shortcake Aug 14 '26
Yes. I've usually described it as there being "too much gravity." I saw someone online describe it as feeling like a bag of rice. "Bricks tied to me" is very accurate too. Just awful. 😞
1
4
4
3
u/Gloomy_Spring5638 Aug 14 '26
Yes since I was a teenager. I’ve had pots since then. ADHD meds help the fatigue & brain fog/adhd.
3
u/locardsghost POTS Aug 14 '26
I get this heavily after doing a lot like I can’t sit outside for a few hours or walk around for a few hours without feeling like my body is made of lead and it lasts for a few days. This is a new issue for me a few months ago I used to be able to walk 10k+ steps a day and have busy days and sure I’d nap when I got home but my body felt fine so I suspect Lyme which I’m being tested for
3
u/Trashliee Aug 14 '26
I feel as though I physically cannot keep my eyes open. Like, sleep must come NOW no matter how I fight it. Usually happens after a work day with excess walking/standing and sitting/mild stairs.
Does anyone experience this as well? Not bone-tired but brain-shutting-off-now tired?
3
u/oneyedsally Aug 14 '26
I call it bone weary fatigue, or I say it feels like I’m trying to walk while underwater.
2
u/The_upsetti_spagetti Aug 14 '26
Yes! It was so bad my doctor and I thought I had another issue, like something neurological. After a ton of blood tests and an MRI, still just POTS to blame
2
u/KindInfluence3742 Aug 14 '26
Yes this is exactly how it feels for me. My body gets so heavy and I can’t move.
2
2
2
u/selkieflying Aug 14 '26
It can be, yes. I've had periods with my dysautonomia where muscle weakness and fatigue are very prominent symptoms. I would also make sure your iron, b12, and various vitamins are all within normal ranges.
2
u/Own_Improvement555 Hyperadrenergic POTS Aug 14 '26
Yes, especially after exerting myself. I had work yesterday and I’m really feeling that today. I do also have comorbs (hEDS, mcas, and getting testing to see if I have dismotility, autoimmune, or vascular compressions, or a combination of those)
2
u/NoCureForCuriosity Aug 14 '26
I always described it as walking through jello, but, yeah, pretty common. The best thing I learned over time was traffic lights for my energy.
Green light - doing good, feeling pretty normal Yellow light - symptoms showing up, fatigue Red light - on the floor
The idea is that you figure out how far you can go into the yellow before it ruins the days after. For me it's like 1%. As soon as yellow hits I have to shut it down. At this point my family is used to it. I just don't go if they're going to do something that I know is going to put me in the yellow. Like right now, my wife is taking the dog on a walk. It's too hot out and I hit yellow too hard yesterday so I'm hanging out and chilling in bed.
2
u/mn9211 Aug 14 '26
Yes I get this often. It’s so hard to describe to people who don’t feel this regularly.
4
u/dunmerza Aug 14 '26
This does sound like post exertional malaise which is a hallmark of ME/CFS and it’s very common to have both conditions - possible you have mild ME/CFS? I’d look into it and see if it fits x
The trouble is no one considers it til it progresses to moderate / severe. Wish I’d worked it out when I was mild.
1
u/rockpigeonfan POTS Aug 26 '26
I have considered this, as my friend has ME/CFS and they said the same thing. I’m not certain that I am experiencing PEM as sometimes the fatigue occurs right after exerting myself instead of the following day. And as far as I know I don’t usually get fevers. But I will definitely keep an eye on it as I know how often ME/CFS is comorbid with POTS. Thanks for sharing.
1
u/Inkr_ Aug 14 '26
My fatigue is like a house is tied to me and I can only lay down... It's worse after beta blocker kicks in and find myself with more energy in the evening. But the beta blocker keeps me out of ER so 😆
1
1
u/SpongyWorthy Aug 14 '26
I have this and for some reason drinking coffee helps.
2
u/rockpigeonfan POTS Aug 26 '26
Yes I did try this after seeing it suggested by multiple people, but unfortunately coffee either makes me tired or gives me panic attacks! I’ve also seen people suggest improving iron levels so I’m going to see if that makes any difference. Thanks for sharing.
1
u/Optimal-Alarm7574 Aug 15 '26
Coffee is a stimulant, so your getting the similar effects of adrenaline I creasing your heart rate which helps pump blood back up to your heart and lungs to reoxygenate and circulate
1
u/ruxxby471 Aug 14 '26
Ye, but I also have had untreated SLE for 6 years which absolutely explains all my “out of the box” symptoms, including the bone deep muscle aches + constant debilitating fatigue
Diagnosed in March, starting infusions next week it’s been rough, but I’m glad I at least know the cause
1
u/ashphyxiated POTS Aug 14 '26
When I feel this way, I know my entire day is written off. Don’t know how I’d fare if I was employed tbh. That’s when I know my fatigue is at its peak.
1
u/extremelysardonic Aug 15 '26
I call it bone deep exhaustion but I really like “bricks tied to me”, that’s so apt haha
1
1
1
1
1
u/Adj_focus Aug 15 '26
I explain it like my body is “powering off” and my body will make me horizontal in x minutes if I don’t do it myself!
1
1
u/samgarr07 Aug 15 '26
i usually say it feels like i'm trying to run in quicksand but yeah basically
1
u/GaydrianTheRainbow POTS Aug 15 '26
I definitely frequently describe it as my limbs feeling like they are made of lead. I also have ME/CFS and other comorbidities though so I can’t say whether it is the POTS, something else, or a combination thereof for me.
1
u/StraightSquare9744 Aug 20 '26
I call it "corpse dragging days" because it feels like I'm dragging around my own dead weight.
1
u/Subject-Olive-5279 Aug 25 '26
I just got diagnosed last week. But I’m pretty sure I’ve had it for years. The fatigue has gotten bad over the last two years. I am energetic and my usual self and then I hit the wall. And I literally have to lay down. I have no other choice. I need to sleep. And once I get a certain amount of sleep I can function again for a while. But I’m just sick of the exhaustion. I wish I didn’t need to lay down.
1
u/Total_Jello_6691 Aug 14 '26
I don’t have POTS and I have this. I finally decided to keep going. If my fatigue is bad enough I nap then just keep going. It’s taken a couple months but I’m finally seeing some improvements. Not a lot but I’ll take any improvement in stamina.
95
u/tazerleeloo Aug 14 '26
This is how I’d describe my fatigue, yes, however I have co morbidities too so it can be hard to determine what the actual “cause” is
19
u/VolatilePeach Aug 14 '26
THIS. I’m being treated for my POTS (I’m on so many meds 🥲) but I STILL have major fatigue. I’m trying to see if it’s my endometriosis flaring and getting worse and/or if I have MCAS and/or if I have cervical instability. I’ve got appointments and referrals to address these, but it’s a waiting game to see if I’ll get any answers and help. I just wish we didn’t have to go through a million hoops and doctors to deal with some of the most annoying symptoms.
3
u/Scary_Meaning_4466 Hyperadrenergic POTS Aug 15 '26
Have you tried a low histamine diet for MCAS? There's also a supplement called DAO that helps breakdown histamine you injest. I just bought some of this. https://a.co/d/08rAgx7D
Oh I also take xyzal and famotidine 2x/day for my MCAS and singulair at night. Singulair you need a script for though. I'm also waiting to get in with an Immunologist so I can get better MCAS treatment because even this regimen is not enough since I got covid in January. MCAS is the worst when it's not under control.
Have you found your food triggers? Wheat is my biggest, I noticed giving up wheat helped my endo pain too. I'm guessing you're already drinking enough sodium and water?
Before I got covid this year though I got my mcas under control pretty well with diet. The Anti-Inflammatory Diet helped me a lot in the past, it is pretty restrictive though. A lot of people don't like that, but for me it was worth it to be feeling so much better. Covid threw gasoline on the fire on all my inflammation though and it's all out of control now.
If you can get a doctor to prescribe you monoclonal antibodies the research behind that is promising. To get it covered by insurance you would have to have migraines and have to have another type of prevention fail. Theres even a study that shows monoclonal antibodies reducing some woman's endometrial lesions it's crazy.
2
u/VolatilePeach Aug 15 '26
Wow! Thanks for all the info and the link! I haven’t tried an anti-histamine diet yet as I’m autistic and really struggle with food. It’s easier on my brain if a doctor tells me to do it than if I try to do it on my own 😅 but I’ll look into and see if I already incorporate certain things. I am hoping that if I get the potential MCAS under control, my endo won’t be as bad (if that’s what’s occurring; I had surgery once for it but the doctor only burned it off and didn’t check anywhere else besides bladder, reproductive organs, and liver). I’m currently on 2 Allegra twice per day and I’m on Protonix and Colestipol for my stomach, so idk if I can take famotadine right now. I’m imagining my meds will change when I see the allergist next month. When I had my huge panel blood test from the POTS doctor, my histamine levels weren’t large enough for him to completely suspect MCAS, but it was also winter, which is when I feel best. It was also before I started experiencing what I think is endo related issues.
2
u/Scary_Meaning_4466 Hyperadrenergic POTS Aug 15 '26
I really like this doctor, she's an expert. Maybe if a YouTube doctor tells you lol, because if you wait on your personal doctor for all the best interventions you could be waiting a long time ...
Especially with our conditions, they're not as well known and especially with the dietary issues you can't typically count on like a PCP to give you good nutritional advice. I can't think many doctors of any specialty to give us good nutritional advice.
I've found you've really got to get out there and research with POTS/MCAS/endometriosis/hEDS to get real answers and find treatments diets lifestyle changes that help a lot.
I think these might help you.
https://youtu.be/cBojJpZ0PrI?is=lDuunzTT414mjXtx
https://youtu.be/DhNIsB8BdLQ?is=1kQEQythme6-dN5U
https://youtu.be/sSq1D5URb-8?is=Y5SpVBVih4IKpVSQ
2
72
u/Etoiaster POTS Aug 14 '26
Yes. I always feel like I am tired to the bones. Like exhausted on a deeply existential (not philosophical but physical existence) level that permeates every single cell in my entire body. My legs and arms are made of both jello and lead, my bones are heavy and weary.
I am tired of being tired, always. I have histamine issues, nerve issues and joint issues on top of + C-PTSD and ADHD. I feel like the win conditions for this crap were rigged from the start 🫣😅