Why so much fatigue with NCS and POTS?

[vbc2000]

Hi Everyone,
I don't have to tell any of you about the crushing fatigue of NCS and POTS.  I keep finding it hard to explain to people who have asked, how fatigued I am.  Of course I get "I'm tired all the time too".  So then I try to explain how much worse I feel than just "tired".  This one woman seems to have a vested interest in proving she's more sick than me...I am not engaging in it, but it's getting really old.  It all stems from her wanting to get out of work.  They've made some concessions for me at work because of my anxiety issues and she's trying to get out of more work.  

Anyway why is it that we are fatigued so badly?  I am still in the infancy of knowing what I need to know about all this but to my simple grasp of it, it feels like I should only feel badly when I'm starting to go into a syncope.  Of course most of the time I'm in a pre-syncope state - at least it feels that way.  I guess I just simply don't understand why NCS and OI cause such constant fatigue.  Hopefully you guys can explain it to me.  Thanks,
Stephanie

[vbc2000]

Data from Star Trek, LOL!  I love that and I love Data!  "The Spoon Theory" that Heiferly referenced above is really perfect for trying to describe it to family and friends.  One could only hope doctors would understand but unfortunately not all of them do.  

I especially don't know why I'm so tired if my bp on salt and midodrine is around 110/70.  If the theory that being tired is the result of poor blood profusion because of low bp, I really don't get it.

[madmerlin]

hi

That reallyhitsthe nail on the head in terms of what concerning me . Why so tired . And reading above the comonality of trying to describe the extent of that tiredness in a form others can grasp . Some days i feel too tired to breathe but even that doesn't really get it . Its like being disconnected from the power supply like DATA from star trek . But thanks for postingthe questionit has cryatalised what is really bugging me . Why am i so tired so much of the time? And how do I explain to the Dr that i mean tired to point of exhaustion not just tired . How do we actually put accross what it means .....???  Lot of waffle sorry hope you feel better a bit soon

[vbc2000]

Hi Marie,
I just can't stand people like the woman I've been dealing with and if I could, I would chose not to deal with her at all but that's not an option.  I was actually thinking of sending her the spoons story but as my husband said, she'd just use it to say that's how bad she feels too.  She has some issues like high BP and she's pre-diabetic but won't do anything about them.  It IS all about getting out of work and attention and sympathy...and she is actually much better than she was if you can believe that.  I'm sorry you have had to deal with that too.  I guess we all do because this is an invisible condition unless we're on the floor!  And I have passed out at work...and thrown up at lunch with this woman!  Unless you constantly voice how bad you feel, people think you are fine.  I don't want to be that person who does voice it every day..it's just not something I want to do and I know for sure people don't want to hear it!  Luckily my current boss knows about it and so does administration, so that's who I guess I should care about.  It's just very hard to deal with daily with this woman.

I'm trying to walk the fine line of not burdening people daily with this, and being open and honest about it enough so I don't suffer from trying to appear "normal".  That's been way too stressful in the past.  I guess we'll just have to keep helping each other with it!  thanks so much for writing,
Stephanie

[vbc2000]

Thanks for writing :)  Pretty ironic that when our brain isn't working well BECAUSE of the AD, we need it to to undersand the AD!  It definitely comforts me that even "brain docs" don't know everything about this complex thing we're carrying around!
Stephanie

[mtgardner]

I have only had this diagnoses about half a year although I know I have had changes over a much longer time.  I am amazed though how taking meds that cause skipped beats can dramatically increase this fatigue, as can having BP too low from medications not being adjusted right, coupled with pacing ourselves a certain way so we can sit down with feet up periodically.  Our activities affect us too.  Too much standing etc. definitely takes its toll.And I know for me afternoons are worse.  Know for some mornings are.  You throw all these factors into the mix and I know I have felt very different levels of fatigue at different times.  

If I can get it there I do best with the average BP adjusted to normal.  I would rather have it adjusted slightly high then too low as the fatigue takes over.

When I first was diagnosed and was still on some meds that aggravated things by causing skipped heartbeats, I was so fatigued I did nothing at all for three weeks but sit or sleep.  I just found it too exhausting.  Getting off those meds and starting to control the BP with meds, in my case it was lowering the BP meds I was already on, has made a big difference although as time marches on I have to keep dealing with more falling BP.   I think sometimes we need less of some meds and have to adjust dosages.  Oh if all pills were scored and easy to cut so we could adjust things more easily!  I need to have the tools to do this though so communication with our doctors is really important.

VBC2000, I really can relate to the insensitive comment of your colleague.  Some people really don't understand and can be educated but others sadly always seem to be in need of getting all the attention and making sure someone else doesn't get accommodation they don't.  I remember after a siege of not being able to get out and having much shortness of breath on exertion we went for a walk and I saw someone I knew slightly.  I said something about not being able to walk very far that day but enjoying being out and about and she immediately gave me a lecture that she was older then I with a bum hip and she could force herself to walk four miles.  I was a bit stunned.
She assumed I was complaining about something small not the overwhelming fatigue that I had for three weeks or the inability of my heart to speed up when needed.

There will be some you want to educate.  Others are not up to it.  It is hard having a  hidden problem too.  Having your leg in a cast would be much easier to explain.  I think the psychology of the work place is complicated.  Is it possible having lunch with this woman and explaining a bit more about what goes on for you would help?  I know you shouldn't have to explain to everyone and privacy comes into this too. Marie

[Kavbear]

My completely non-scientific non-research based theory is that our brain is SO powerful (look what it does to opiate addicts who go cold turkey....which happens to stem from "normal" autonomic systems.....and if you don't know ask genius me who once upon a time didn't know that opiates could not just be stopped if you were not abusing them) that it will do anything to get us to lay down so it can get more blood.  

My more educated explanation is that we often have less blood volume and even if not it might be circulating too fast/slow, with too much this and not enough that or vice versa to get that all healing new O2 rich blood properly "peppered" with the right chemicals where it needs to go
and the BIG whopper is that they "think" AD affects REM sleep (umm or the sleep stage that happens to be where our body sends out the "cleaning and fix it crews"....holy cow talk about cognitive issues...ME ME says ME)

Yes AD can cause cognitive issues but so can SO many medications and they don't list that as a side effect (I had to learn the hard way after being on the wrong meds prior to my dx and now have "mild cognitive impairment" in addition to the "typical  brain fog......which we hoped would turn around after stopping the meds and some time, although I have gotten exponentially better, going from a high IQ to having trouble reading and comprehending basic things, which was my greatest strength (at a time when I NEED to be able to understand medical issues that at my brightest would have taken at least a medical dictionary so I can advocate for myself) and putting together a complete thought that a nine year old could do has been very humbling to say the least.
There is a plus to living in central FL with our elderly population I should be able to find doctors who do "cognitive rehab" easier then some areas of the country
;-)

Lastly the brightest of the brightest who study our brains and how our nervous systems work all day every day barely understand anything about this beautiful brain of ours or anyone's for that fact, grasp what you can when you can and be patient with yourself!

[vbc2000]

Thanks for writing Heiferly :)
I guess if I can't even fully grasp how far reaching the effects of AD is, I shouldn't expect anyone else to...yet.  As I understand more and learn to explain things better, I hope they will.  That spoon analogy was incredibly helpful and I think it will help others understand too.  Thanks again,
Stephanie

[vbc2000]

Yes an hour or two without pre-syncope would be great, especially if I could get it on demand!  I'm starting to think it's useless to hope for that but *maybe* the right medication will do that...once I find it!  I'm having a particularly bad day because I think I'm getting sick :(

That's a really good way to describe the fatigue to people...I'm going to remember that.  I guess it makes sense that if your brain isn't getting enough blood, fatigue would result, but I thought maybe that would just make you goofy...or goofier!  I am particularly troubled by all the cognitive stuff going on and I'm sure the lack of blood to the old noggin explains that...I just want to make sure nothing else AD is going on.  Thanks for writing,
Stephanie

[Heiferly]

Stephanie

It may be helpful to think in broader terms of dysautonomia rather than to think strictly in terms of your specific diagnosis.  Recall that your autonomic nervous system is essentially connected throughout your body:

http://psych.colorado.edu/~spencer/PSYC4092/ANScolor.jpg

Also, the changes that dysautonomia makes in circulation and perfusion have widespread impact.

There is more to NCS than fainting (I know everyone with NCS knows this!) and more to POTS than tachycardia (Chime in that POTSie chorus—oh yeah!), etc.  There is much more written about the signs of our disease than the symptoms, because signs (by definition) can be independently observed and measured.  Symptoms are the things that only we as patients can sense and report to others (like fatigue), and as such, the ability to research symptoms is limited.  But they are certainly no less real to us, and fatigue is considered one of the defining and primary symptoms of some forms of dysautonomia.


It's so frustrating when people don't understand the scale of what we mean by "tired" vs. a normal sense of the word.  For that reason, it may be helpful to avoid that word entirely.  Using another word instead such as "exhausted" or "drained," which has the connotation of a depleted resource, may be helpful because essentially that is the message we are trying to convey:  our energy is a limited resource that easily gets depleted.  As Dr. Grubb states in one of his articles,

"Patients may be severely limited as activities such as housework, bathing, and even meals may exacerbate symptoms. Recent studies have shown that many patients with POTS may suffer the same degree of functional impairment as patients with chronic obstructive pulmonary disease or congestive heart failure, yet these patients are often misdiagnosed as having chronic anxiety or panic disorder."

(from:  http://www.medscape.com/viewarticle/522421 )

One writing that has circulated online has been particularly helpful in assisting people with illnesses which cause severe fatigue explain this exhaustion to friends and loved ones:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

[beema36]

Oh and when others say they r tired too I tell them to imagine the worst flu they ever had remember the fatigue they had then and multiply that by a 100 and they can know fatigue I feel. That was my neurologist suggestion.:)

[beema36]

Stephanie- I.feel like I am in presyncope all the time too. I always blame fatique on my ms but in relation to AD if our brains aren't getting adequate blood supply half the time makes sense fatigue would be so bad.
I will be interested to hear what others say. Dont know about u but I would go for at least an hr or two a day that I don't feel presyncope.
Beema