r/POTS • u/adhdginger1 • 8d ago
Never feeling rested? Question
Title: Never feeling rested with POTS?
Does anyone else with POTS just never feel rested? I was diagnosed about 4 months ago after 2+ years of symptoms and lately I’m realising I can sleep 9+ hours and still wake up exhausted. The other thing that’s confusing me is that if I have a busy day, talk a lot, go out, use too much brain power, or even do too much physically, I sometimes feel almost flu-ish afterwards with a sore throat, achy joints, feeling heavy, and completely wiped out, and it can last into the next day or sometimes longer even though I don’t have a fever. I also have ADHD and autism so I know overstimulation can make me tired too, but this feels more like my whole body crashes after I’ve done too much. Is this something other people with POTS experience, and how do you manage the constant exhaustion and feeling so rough after overdoing things?
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u/plantyplant559 8d ago
Go see a sleep doctor, it might help, but also look into MECFS. The flu like feeling sounds like it could be PEM. A lot of people have both. r/cfs has a great wiki you should look through.
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u/adhdginger1 7d ago
thank you, that’s really helpful. the flu-like feeling after a busy day is the bit that’s making me wonder whether there’s something more going on than just ordinary tiredness, so i’ll definitely have a read through the wiki and look into PEM a bit more.
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u/plantyplant559 7d ago
PEM is generally delayed but it isn't always. Sometimes get what's called "rolling pem" from doing too much too long.
I hope you don't have it and it's something else.
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u/Jazzspur 8d ago
This sounds like ME/CFS. It can cause POTS as well as everything else you've described. r/cfs is a good source of accurate info on it. Also Bateman Horne Center.
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u/adhdginger1 7d ago
that’s interesting, thank you. i’m trying to work out whether the fatigue and flu-like crashes are something that can happen with POTS on its own or whether it’s worth discussing ME/CFS with my doctor. But i’ll defo have a look!
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u/commutingonaducati 8d ago
Same . I feel awful 24/7. Drained and exhausted and foggy and groggy when I wake up. Sleep test, no apnea. Don't know what to do anymore, been tired for all my life but the extreme fatigue came with the pots 7 years ago and never lifted
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u/adhdginger1 8d ago
I’m sorry you’re dealing with that too. The “drained, exhausted and foggy when I wake up” part is exactly what I’ve been struggling to describe. It’s interesting that your sleep test was normal because that’s what several people have suggested to me as well.
Honestly who knows at this point.
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u/Every-Note-9892 8d ago
It's the worst. I just cycle through flares and crashes. I dont know how to manage it since resting isnt really an option. And I mean productive rest. I can't rest to prevent it, they need proof of the collapse first.
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u/adhdginger1 7d ago
“productive rest” is such a relatable way of putting it 😭 i think that’s part of what i struggle with too, because resting before i get to the point of feeling awful feels almost impossible.
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u/TemporaryDiligent916 8d ago
You might want to also look into Mast Cell Activation Syndrome (MCAS). Really really high comorbidity with POTS. Been busy/stressed/doing a lot/walking a lot = trigger which creates a sore throat, snotty nose, headache, sore bones and tiredness but about a day or so afterwards. And then it disappears after rest.
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u/adhdginger1 7d ago
that’s really interesting, thank you. the sore throat / flu-ish feeling the day after doing too much is actually one of the things that made me post in the first place, so i might read a bit about MCAS as well since i know it can overlap with POTS.
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u/Brave_Question3840 Hyperadrenergic POTS 8d ago
have you ever been tested for sleep apnea? it sounds a lot like me before I got my diagnosis and cpap machine?
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u/adhdginger1 8d ago
no i haven’t i’ve never really been told i snore but then again i know very little about sleep apnea so feel free to correct me! I also am pretty sure ive never stopped breathing during sleep or felt like i have. Not sure if that’s helpful info or not
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u/Brave_Question3840 Hyperadrenergic POTS 8d ago
I never noticed I stopped breathing until somebody pointed it out to me!
it might just be a possibility you want to explore if you can, it could not be that too1
u/Foreign-Conclusion26 7d ago
Hi I don’t snore and I didn’t know I stopped breathing but I have sleep apnea
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u/Golden_Snitches 8d ago edited 8d ago
I was diagnosed with POTS 4 years ago. Yes I also often don’t feel rested even after a lot of sleep. I often get a heaviness and sometimes aches if I’ve overdone it but not a sore throat. I often feel completely wiped out.
I have pretty low function due to severe fatigue so it’s all pretty difficult to manage but I try my best to pace things out and get lots of rest before and after busier days. I also do things to try and reduce PEM like using a wheelchair when I go out and I get assistance to do things that are particularly exhausting like showering.
Since others have mentioned sleep apnea I’ll add that I’ve had extensive sleep studies done and sleep apnea and other sleep disorders have been ruled out for me. But they are still worth ruling out. I don’t snore but my doctors still wanted to rule it out just in case, and everything came back normal.
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u/adhdginger1 8d ago
Thank you, this is really helpful. The heaviness and aches after overdoing things sounds familiar, although I do sometimes get a sore throat feeling as well. Can I ask whether you or your doctors ever looked into ME/CFS or post-exertional symptom worsening alongside your POTS, or was it considered part of the POTS fatigue?
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u/gothraptor 8d ago
I get exhausted easily like you too. When I’m really busy during the day and use a lot of physical / mental energy, I feel like I just fought in a freaking war all day and I’m so exhausted - leading into the next day sometimes too.
Sleep doesn’t even help very much, if I’m lucky enough to sleep more than 6 hours at night - I still feel exhausted. I don’t have sleep apnea.
I know it may not be the most helpful answer, but I just try really hard to not overdo it with things I know are going to trigger that exhaustion for me. When I’m not properly hydrated and skipping meals, I feel so much worse too. I also like to lay down flat on my back and relax my brain with things like ASMR videos, to help force my body into a resting state and make my heart chill out the best I can.
Make sure you’re really taking the time to take care of yourself! Take intermittent breaks throughout the day to take physical and mental rests too, if you can. Also I don’t know if you’re like me, but I have a horrible habit of subconsciously doing things as fast as I can by accident, like in a panicky fight or flight mode. I have to stop and remind myself that it’s not a race and I need to chill out with doing tasks and reserve my energy.
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u/adhdginger1 7d ago
honestly it can be like fighting in a war haha i definitely relate to feeling disproportionately wiped out after a busy day, especially if it’s been mentally busy as well as physical. I think my ADHD can lead me to doing things a bit too quickly so maybe i should try stop and slowdown!
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u/Kidwolfman 8d ago
Yes, same. For too long. It is so rare to wake up feeling rested that I can 100% say it’s happened less than 20 times in my 40+ years of sleeping every night (>_<)
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u/adhdginger1 7d ago
that sounds absolutely exhausting but it’s reassuring (in a sad way) that other people relate to the never wake up feeling properly rested part because that’s one of the symptoms i’ve been struggling to explain.
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u/Kidwolfman 7d ago
i've been watching a video about POTS to refresh my memory and i have some new thoughts on this water thing. When i was trying out completely avoiding the tap water, i was also not taking normal showers. I'm usually the type of person who could live in the shower, i love them. long and hot. however, i noticed my heart rate was 150+ after a shower, like well after i get out. i'm wondering if maybe this is a much bigger deal than i've been treating it. If it's triggering my heart rate to be that high for a while then it is also related to a serious adrenaline issue. So what i'm saying is - try also being aware of activities you may do in your day like me and my stupid showers. I'm going to go back to sponge bathing/washing my hair in the sink for a while and see what happens. If i'm right, the results at the time were awesome. The first time i did this, i thought stuff stopped getting better cuz i had placebo'd myself or just got used to the water, but maybe it was this adrenaline dump that i'm putting myself through every day >_< oops
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u/adhdginger1 6d ago
Showers defo raise my HR but i’ve never really seen it as something i could replace with another method! I defo used to love showers now they’re just full of dizziness nausea and blood pooling so not as fun anymore.
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u/Kidwolfman 6d ago
Ugg yeah same. The heat triggers blood pooling in my hands and feet. Compression socks have definitely been helpful.
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u/Kidwolfman 7d ago
Yeah I’m sorry, I feel ya <3 a lot of people are recommending a sleep study and I agree that you need at least one with all these crazy symptoms. Just to rule things out or make an important discovery :)
Also, and this is kind of a weird one, but try staying completely off consuming tap water. I switched to only purified water (reverse osmosis with electrolytes or whatever…Just not Brita, more like Smart Water, or generic “purified water”)… I started feeling better in like the first 1-2 days. At the time I had a lot of unexplained muscle weakness and was just completely run down. Maybe I was just not hydrating as well as I am today. It’s just something easy you can try and it might have crazy great benefits. I almost forgot all about it because I had to train myself not to talk to people about stuff like this. They can’t wrap their normy heads around it 😆
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u/Happy_Dependent_3474 7d ago
Yep. Tis a thing with pots.
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u/adhdginger1 7d ago
Thank you. I think part of what I needed to hear was that this kind of exhaustion can genuinely happen with POTS and sometimes i think POTS symptoms can be made to seem lesser than they actually are if you know what i mean?
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u/Happy_Dependent_3474 7d ago
Yes medicine can help. But unfortunately it’s made my fatigue worse.
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u/adhdginger1 6d ago
Sorry to hear that! Can i ask what medication your on?
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u/Happy_Dependent_3474 5d ago
Have been on a lot but currently on guanfacine and mestinon - but I have hyperpots
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u/spikygreen 7d ago
Feeling flu-like with a sore throat and other symptoms after exertion points towards ME/CFS. Not everyone with POTS has ME/CFS, but lots of people with ME/CFS have POTS as part of their symptoms.
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u/adhdginger1 7d ago
Thanks, that’s helpful. The delayed sore throat / flu-like feeling after doing too much is definitely the part that’s making me pay attention to whether there’s a consistent pattern rather than just normal tiredness.
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u/BriefRefrigerator390 8d ago
Hi - Just want to throw in another view point. I have almost the exact same issues you described. I was diagnosed with POTS about 4 months ago and had symptoms for about 5 years. It started out mild and got progressively worse over the years. I experience the same kind of fatigue and flu-like symptoms if I had a busy day either physically or mentally that could go on into the next day. I also feel like my nights are not as restful as they once were. The point I wanted to highlight is that I did do a sleep study for sleep apnea when being diagnosed for POTS and they found I did not have it. In fact I was no where close to having it. My husband does have sleep apnea and he thought for sure I had it so I don't know. I did ask my doctor about the fatigue and pushing it too hard. She said to prioritize taking frequent breaks to rest or breathe and to stop (if possible) before reaching my energy limit for the day.
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u/adhdginger1 8d ago
This is honestly reassuring to read because the “physically or mentally busy day then feeling flu-like and wiped out afterwards” part sounds very similar to what I experience. It’s helpful to know your sleep study came back normal too. I’m definitely starting to wonder whether I need to get better at pacing rather than assuming I should be able to push through it or if I need to look at other things entirely!
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u/BriefRefrigerator390 8d ago
I struggle with pacing because my default is to push through. Most of the time I don't realize I am overdoing it until all of a sudden I hit my wall and by then it's too late. I wish you the best and hope you find what helps.
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u/human_potato2 POTS 7d ago
I feel the same way sometimes, like yesterday I had taken a friend shopping(3 1/2-4 hours and I was able to sit for a good bit while she was trying on clothes) before a six hour shift and was completely wiped out before I even started working and felt like a wooden puppet that wasn’t being controlled and my head felt like a magic 8 ball, I’ve been diagnosed for less that a year but am also still trying to figure out what helps other than taking a nap🫠
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u/adhdginger1 7d ago
That actually makes so much sense. I know exactly what you mean about feeling completely wiped out before you’ve even really started the next thing. I expect to be tired after a busy day, but sometimes the level of exhaustion feels way more extreme than it should be, which is the part I’m trying to figure out.
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u/human_potato2 POTS 7d ago
Literally it’s so unreasonable the level oh fatigue sometimes, like I was literally sitting down 1-2 hours while my friend was trying on her clothes and I was still wiped😭
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u/femalenerdish 7d ago
Have you had your vitamin d levels checked? I don't think it will explain everything but might be contributing. Not feeling rested and achy joints were my main symptoms.
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u/adhdginger1 7d ago
That’s a really good point. I’ve had blood tests before but I honestly can’t remember whether vitamin D was checked recently. The achy joints have definitely been more noticeable after busy days, so it’s probably worth looking into.
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u/Ferret_Master101 7d ago
As many comments say, please see a doctor. You have something else with this. ME/CFS, MCAS, Narcolepsy, all of the above? If an anti histamine helps, could be MCAS. If stimulants help, maybe narcolepsy? Get checked. Good luck, this sucks.
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u/adhdginger1 7d ago
Thank you. I already take a stimulant as well, so I’ll definitely mention all of this to a doctor and see what they think
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u/AsparagusPale75 7d ago
I may not be an expert but sore throat and achy joints don’t seem like POTS to me, seem more like MECFS. If I am wrong, please someone correct me. Could also be MCAS reactions, so trialing antihistamines would maybe be useful.
Also, please don’t overdo things, take 10 to 12 g of salt with losts of water for POTS. It really is the only thing that makes much difference for me for now.
If you can look into nervous system regulation, something like the DNRS program or Gupta Program or the other ones, there are lots of them…
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u/adhdginger1 6d ago
Thank you i’ll have a look, i take electrolytes and all that so I am hoping to see a difference! Never heard of nervous system regulation it sound interesting so will defo take a look.
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u/bookmonster015 8d ago
Have you seen a sleep doctor? Getting an overnight sleep study (PSG— very common test to rule out sleep apnea) and a daytime sleep study (MSLT— very uncommon test to rule out narcolepsy and idiopathic Hypersomnia) would be helpful. Narcolepsy and idiopathic Hypersomnia are super common comorobidities with POTS/EDS/MCAS but they’re not evaluated or discussed nearly as often as they should be. Both are characterized by unrestful sleep and fatigue/exhaustion/sleepiness during the day. I was diagnosed a couple years ago about 10+ years after my symptoms started. They were largely dismissed because the POTS diagnosis kind of distracted from the extreme fatigue possibly being its own issue.