I Have No Energy.

[imapumpkin]

I've had POTS (or at least known about it) for 3 years and have always been really high-functioning (Worked in restaurant, on my feet for several hours a day, no fainting, work not a problem). After spending a torturous summer in obscene heat in DC and suffering a trauma that resulted in hospitalization for chest pains, I am now back in the Northeast and much happier to be in cooler weather.

It's been over a month and I still feel like I have no energy. Normally with my POTS i'm pretty much chronically fatigued but it is manageable, not debilitating. However, since I've been home from DC I feel every day when I get up and all day long like I've been beaten with a ton of bricks in a pillowcase and like my eyes want to close and nap. I saw my family doctor today and she said she can think of no physiological reason why I should have no energy (I think she forgot about my POTS since I was seeing her for a follow-up about anxiety). I'm not sure whether this complete wipe out I'm feeling is my POTS, because I haven't been experiencing tachycardia with postural changes.

I have been trying to rebuild my stamina by taking short 15-20 min walks around my neighborhood and I usually feel better afterwards, and its usually at night (for some reason after the sun goes down I feel better for whatever reason). I asked my dr if I could try and increase my stamina by exercising for real and she said definitely not, don't go near a treadmill. But I'm so frustrated that my dr didn't even offer to refer me to a POTS specialist or run blood work or anything to figure out why I feel each day like I've run 10 miles and been hit by a MACK truck. I have been taking it easy and not pushing myself and I had hoped that after a month I might see some improvement in my energy level but I still feel like a sloth. I'm really scared that my time in DC and the trauma I suffered has pushed me into the group of people with POTS who can't work...which is terrifying because I've had no problem working for my entire adult life.

Does anyone else just feel totally depleted of energy without the fainting or the tachy? Please help I feel so discouraged.

[hippychic258]

Don't get discouraged before the flare I am in now I went through times where that happened to me exhausted with no tachy or fainting but it passed. I feel like with Pots so many symptoms come and go and then come back again. I also feel so much better after the sun goes down it is so weird because I am not ever outside. I gave up trying to figure it all out, it is going to be what its going to be I just take it day by day and hope one day I will be well enough to function again.

[brethor9]

Hi Pumpkin

Sorry to hear you are struggling (hug)....I can definately relate to the bad fatigue and loss of energy right now....for me it comes in cycles. You may just be having a bad flare right now and really need some extra rest. Sometimes the worst thing you can do with POTS is to keep trying to push through the symptoms.....maybe push your doc to run some blood tests like iron, vitamin D, magnesium, B 12...these can all cause problems with fatigue. Also what is your sleep cycle like? alot of us have issues with sleep from the excess adrenaline, pain, tachy, bp swings...that could also be causing your fatigue. For me personally, I always have relapses after any kind of trauma that land in me in bed for a week or more...and the heat is killer our systems are just so fragile I guess.....feel better soon.....

Bren

[hippychic258]

I agree Bren Sometimes it is the worst thing to do with Pots is to push through the symptoms. Hope you both have some better days!

[imapumpkin]

Thanks for your replies. My sleep schedule is WAAYY off because I feel so much better at night I stay up very late and then sleep well into to afternoon. Since I worked in a bar for the past 2 years this wasn't a problem but I'm trying to get back on a normal(ish) schedule and I feel like whether I get 6 hours of sleep or ten I'm still exhausted the next day. I'm sure anxiety and adrenaline are not helping my case...I'm taking klonopin to help me deal with the anxiety after the trauma which also makes me even sleepier. I'm trying to tread a fine line between giving my body the rest I feel like it needs and not coddling it so I decondition. In the past (when I was high functioning) if I go several weeks without exercise I find my energy level goes down because my body is deconditioning but this is a whole different ball game because even if I do go for easy 15 min walks I feel tired and my doc said no hard exercise so I'm getting none of the good endorphins that make me feel better. It's also frustrating because my doctor offered me no suggestions on how to handle this or try and help improve it. Since I've never been this badly affected, I think its time to see a neurologist who specializes in Dysautonomia.

[peregrine]

My tachycardia is pretty controlled on my beta blocker, but I do still get severe fatigue (which the Ritalin is helping with to a degree, amusingly) even on days when I don't have presyncope. So - yeah - fatigue appears to be pretty common for us. Remember that even if you don't have presyncope or tachycardia, your autonomic system is out of whack in other ways that cause fatigue. Tachycardia is just the most easily measured (and classified) one, but pretty much everyone with POTS has more than just tachycardia (hence "syndrome").