So Much Fatigue

[eva.gonzalez]

I have been experiencing intense fatigue for a long time now, I have had POTS for a little over a year now, and I've always known that POTS causes excessive fatigue. My fatigue is bad as i'm sure it is for most people, and I sleep between 14-20 hrs a day, sometimes a few hrs more on the weekends and my question is---is this a common symptom for POTS, I mean this much sleep?? And when i get up i still feel like i haven't rested as much as i should have, and the fatigue is an all day, everyday thing. I am so tired allllll the time.

I know everyones POTS is different than mine.

I am wondering if maybe I might also have CFS along with the POTS, so I am thinking of making an appt. with my family doctor about it.

I asked my cardiologist what i can do about the fatigue and he just told me to stay off the caffeine (chocolate, coke, etc.) which i do, and i still feel the exact same way, so that didn't really help.

The fatigue is affecting me so much (along with all the other POTS symptoms), i miss a lot of school and work. I am seriously considering not going back to school this spring.

Does anyone else on the forum have CFS and POTS?? and if so how bad is your fatigue and what kind of doctor diagnosed you?

should i even see my family doc. about it...or.....is this how bad the fatigue is always going to be because of the POTS?

[potsgirl]

Many of us have fatigue as our main symptom, myself included. My cardiologist said that I probably have CFS with my POTS, and I'll be tested for that with my internist soon. Many times CFS, POTS, and fibromyalgia are linked. POTS itself can involve debilitating fatigue. Have you tried Midodrine or Florinef yet? They can help moderate your BP (I have no idea what yours is, so this is general knowledge) and make you feel more energetic. If you haven't tried them, ask your cardio if they might not be appropriate for you.

Hope you feel better soon.

Cheers,

Jana

[fighting4health]

Fatigue is one of my main problems. I got to a point where I would start to close my eyes when I was still walking and also dozing off at red lights while driving. I had a sleep study and everything came back normal. Sometimes they can find triggers or reasons for fatigue with sleep studies or certain blood workups. Sometimes they find nothing and it's POTS as the only cause. Hope you and your doctor can get you feeling better.

[extern14]

I too have this fatigue. There are days where I could sleep for 20 hours and still be tired. My POTS doctor hasn't diagnosed me with CFS but I am pretty certain I have it. I already take Florinef and it doesn't seem to help all the time for it. Sometimes, POTS just has a way of doing what it wants no matter what you throw at it. I would see if you could get a CFS diagnosis though. Hope you get better. Hang in there.

[toddm1960]

This isn't fatigue.......it's bone crushing exhaustion. Count me in with you, as bad as the other symptoms are exhaustion is an everyday minute of everyday thing for me. My sleep study came back with alpha / delta disruption which doesn't help, but I think they'll someday find CFS/FIBRO/POTS all intertwined. I wish I had some answers but I haven't found much that helps, I hope you find something that makes you feel better.

[Brye]

Definitely fighting fatigue. I have 4 kid fatigue. I have POTS which causes excessive fatigue. I take atenolol which causes excessive fatigue. Bradycardia ... fatigue. I'm also recovering from mono .... FATIGUE!! Have you by chance been tested for mono? Never know? I haven't pursued the CFS diagnosis. I guess I'm not familiar enough with it to know whether it even pays to pursue. I just feel like I'm doomed to be tired. I sleep as much as I can and I still feel like I could crawl back in bed at any time. If you find a resolution please share it with us!! Sorry I can't offer much advice. I think I need to go to bed now. All the fatigue talk has made me tired!!

Good luck!

Brye

[eva.gonzalez]

I'm so blessed to be on this forum, thank you everyone for your input, i really appreciate it.

it made my day

Jana-My doc gave me Florinef when i was first diagnosed, and that didn't help at all. He then gave me 5mg of Midodrine and it helped for a month or so, and just recently i saw him again and he gave me 10mg of Midodrine and i've been taking it for about 2 weeks now, i haven't really noticed a significant change yet..hopefully sooner rather than later

Brye-I got blood work done this past spring and apparently i had the antibodies for epstein barr virus...i didn't really notice i had it, the POTS gives me enough fatigue!!

I am definitely going to go see my family doc. about getting a CFS diagnosis, I would see my cardio about it but he is only in my area every other tuesday so he gets booked super fast, i wouldn't be able to see him until 3 months from now.

Thank you everyone for your kind thoughts

[scarfgirl]

This isn't fatigue.......it's bone crushing exhaustion. Count me in with you, as bad as the other symptoms are exhaustion is an everyday minute of everyday thing for me. My sleep study came back with alpha / delta disruption which doesn't help, but I think they'll someday find CFS/FIBRO/POTS all intertwined. I wish I had some answers but I haven't found much that helps, I hope you find something that makes you feel better.

It isn't bone crushing exhaustion...it's soul crushing exhaustion. 20 hours of sleep and I can barely hold me head up. Hopefully it'll pass soon

To everyone else who's tired right now I offer a big virtual energy hug!

[erikainorlando]

Hmmm. i did have this post Guillain Barre. It was terrible...once fell asleep standing in line at Disney!!

With POTS, I am not really tired. I just can't function...terrible pressure up the bacj of mny head when I stand...pain down my arm...so ill feeling from any activity....but I am really not tired so to say.

Really don't sleep well at all in fact...I usually need a sleep aide to help me sleep. Always feel like I am struggling for air and have chest pain a lot....not really comfortable to sleep!!

No words of wisdom...just comparing notes!!

Erika

[erik]

It can potentially help to characterize the fatigue as best you can. It sounds like you've done that already and have an emphasis on somnolence, perhaps "excessive daytime sleepiness" which docs might have certain strategies for (including considering illnesses that tend to cause this, ensuring diet or behavioral things are maximized to oppose this, considering medications to counter it). This might be different, for example, from a person who's muscle activity wanes prematurely (low level physical fatigue, muscular or neurological or mitochondrial whatever)... or different from someone who wakes up fully but just doesn't get the umph to do stuff (like a central fatigue) but can still force muscles to perform... or different from cognitive fatigue, and so on. Might even be different from "fatigueability" where one has runs of pretty normal activity but it dies out prematurely and/or can't be recovered from afterward. It's just one of those words like "dizzy" which can mean anything from fainting, lightheadness to detached to full vertigo. Just be sure to be as clear & specific as possible with docs so they've got the best shot at addressing symptoms (if not determining underlying cause). Sounds like you've got a hold on this, just mentioning it generically.

[Guest tearose]

From my experience, there is no clear predictable pattern or reason for that total body-fatigue that can come.

I tend to have it harder in the colder weather and spend a lot of energy just staying warm. This is tiring in itself.

I try to do as much as I can and then allow time for recharging. Still, there are times I pace myself, and seem to manage fine and other times that doing one load of laundry will wipe me out. It makes me feel very unreliable but I know I am doing my best.

I try to nap and only plan one major activity a week right now.

I hope your fatigue starts to become less and less very soon. Until then, try to rest a little and do leg lifts a little!

best regards,

tearose

[Griffin]

I was first diagnosed with CFS, then much later diagnosed with Innapropriate Sinus Tachycardia and Hypotension.

The exhaustion is awful and so is the fatigue (I experience them as slightly different feelings). My sleep is severely disrupted. Often need 14-18 hours sleep and often awake all night. I also have Delayed Sleep Phase Syndrome and Periodic Limb Movement in Sleep (PLMS_ and Restless Leg Syndrome (RLS), so the quality of my sleep is awful. Basically I'm a mess !!

I don't think any of this is unusual though for people with POTS or CFS. Although not being unusual isn't enough to make it cheerful news

[Ravenau1]

I have terrible fatigue also, and it doesn't seem to matter how much or how little I sleep. Sometimes I sleep for 18+ hours per day and sometimes I can hardly sleep at all. I sometimes nod off on the couch but most of the time the fatigue is like being in slow motion with a lead body (if that makes any sense! lol) like I can't quite summon the energy to pick something up etc, or get up and walk around.

[ramakentesh]

Ive been told by three respected doctors that nearly all patients with POTS would satisfy the definition of CFS and the two are interchangable. Certainly between 30-80% of CFS patients have either NMH or POTS. Dr Stewart stated that in teenage CFS patients he nearly always finds signs of POTS or OI.

Fatigue is a challenge - a regular sleep cycle and exercise actually help me. Careful use of caffeine also helps as does my favourite weapon in the fight against POTS - licorice - gives me a good type of energy - the type where my brain clears rather than gets more juttery,

[ramakentesh]

Innapropriate Sinus Tachycardia and Hypotension

Have you had a good response to beta blockers? In 50% of patients with inappropriate sinus tachycardia autoantibodies that are overactivating beta 1 receptors were detected. In some both beta 1 and 2.

Which means it could potentially be an easily treated disorder.