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I'm Not Fatigued, Is That Weird?


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I read so many of your stories, and I feel like such an odd ball.. Im not abnormally tired... Is that weird? I get tired, trust me, but it seems pretty normal considering that I'm raising my two girls (1yr and 3yrs) and were generally on the go-go! Plus I go to the gym 4-5 times a week.

This whole POTS thing is so bizarre, that we all have this syndrome yet it varies so greatly between us all.

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I WISH I didn't have the fatigue version of this crazy illness. I have seen others on here that also say they've never had fatigue. (Jangle is one who comes to mind. You might search some of his threads.)

I think more and more docs are saying in their research articles that POTS is a set of symptoms with a lot of different underlying pathologies (causes). That's probably why we have so many different versions of this. POTS is more of a symptom than it is an actual diagnosis.

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Hi,

I don't feel tired either - in fact I am raring to go - it's just my body won't let me and if I do too much i just become ill.

It's very frustrating but I feel I am lucky.

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I am the same--I have energy, just not the physical capacity. I have also read of people here saying if they go to the doctor or for testing, that they spend the next few days in bed. Not me. If I do something like walk into a building for a test, I have to sit down and let my cardiovascular system calm down. No matter what I do upright for up to 10 minutes, my cardio. system goes crazy and I then have to sit for 15 minutes or so until everything is back at baseline.

But, I never run out of energy. I don't ever have to "recover" for hours or days. That's interesting to hear that I am not alone. I thought I was odd, too!

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I tire easily but recharge by laying down and eating regularly (every hour at least). I've been a gf celiac

since 2005, but I may not have healed properly. I've needed to eat food to function every hour since 2005.

I can only be up for a few minutes without feeling the effects of blood pooling so that may explain it too.

I wonder what we have in common that explains why or why not we're fatigued. I'm sure there are multiple

possibilities.

I'm not sleepy. My upper body just feels drained of all blood .. Tc .. D

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Sometimes i feel like I have to keep moving or else I'll get dizzy. I lost four pounds in one week (but I have a lot to lose postpartum so that wasn't too crazy) this way.

I have recently had a long bout of fatigue, but I wonder if it was the metoprolol I was taking. I don't really get how metoprolol will help my symptoms so I've stopped taking it with my cardiologist's blessing, and I do feel a bit better.

And of course, having a three month old doesn't help the fatigue either!

I feel kind of like I have two gears -- first and fifth. I'm either go/go/go, or I want to rest and be still. Having to do things slowly or to sit or stand still for a long period of time is the worst. But I can move around and get things done no problem.

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  • 1 month later...

I'm back to wondering why some of are fatigued.

Do those who aren't fatigued have high bp ? I feel a bit better when my bp is higher than normal. Granted I get angrier easier too.

Do you have thyroid problem ? Fwiw. I have hashimoto's but my tshs are barely out of range. My doc has run all the right tests. I just have thyroid antibodies that vary from high to low.

If we have poor blood flow aka hypoperfusion, all of our upper organs are losing out on nutrients including oxygen. Plus we're not detoxing properly

because of reduced blood flow and our organs can't do their jobs. So how can anyone feel good when this is happening ? I can feel hypoperfusion (muscles are tight / brain and lungs shut down ) in my upper body, can you ? This goes away after laying down so it's obvious.

Is it from pathogens like bad bacteria or parasites ? H pylori and parasites made me close to bedridden.

Is it from allergies ? I had these since I was 19 but wasn't tired back then but maybe it's the

elevated degree or how my body now reacts to an allergen. I'm swelling nowadays and that's tiring.

Is it our adrenals ? I have adrenal fatigue.

Ideas ? Others ?

Things that help my fatigue are juicing, b6, resting and eating healthy / wahls. Allowing 500 - 1000 mg

Of straight sea salt to dissolve slowly in my mouth helps if I'm low on salt. Nothing helps the hypoperfusion tho. I can have energy but I'll still get petite mals and sob from being upright.

Tc .. D

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I'm better since I am now more balanced with my beta blocker, but I also started with high blood pressure, and I'm now on many supplements and vitamins that have increased my energy. I was deficient in D3, and the difference now is amazing...don't get me wrong, I still have my days and have POTS, but it is alot better :) You need to do research on supplements; I drink high vitamin and mineral drinks with protein; listen to your body; when your tired, take a nap when you can.

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I have me/cfs but I've been unravelling my diagnosis for 7 years now to see what's behind it. I know I

have a few diagnosises that could be behind this but I'm still working on others like allergies, petite mals, parasites, etc.

I have pem (post exertional malaise) just from trying to keep up with normal daily life so this holds me back. My pem means all cognitive functions like reading, writing etc, are more difficult fot 1 - 3 days post a day of running errands. Fwiw. Before I knew what pem was and could explain it, people in my life thought I was moody or depressed every few days. (geesh) I just didn't have the energy to be sociable on any level. Thankfully, we have the internet so we can learn this sort of thing.

I've tried a lot of supplements in the last 5 years and mb12, adb12 and p5p all gave me energy for a few weeks but then they induced total and complete insomnia. I had to up my sleep supplements to the point that I couldn't wake up the next day.

I'm going to try taking 1/4 tsp of target children's dye free benadryl since it's an all purpose allergy med it should help me with however my body is reacting. I'm getting throat swelling and it's the only med I've found so far that stops this right away.

And 1/4 of a .125 mg sublingual tablet of klonopin because I have petite mals everyday when I'm up too long.

I'm taking these at night and already sleeping like a log. I was being woke up constantly by sounds in my neighborhood. But not with these ..

Hopefully this will take care of my allergies and petite mals and give me energy or at least lessen the burden on my body. Tc .. D

Hi kim,

I'll have to look up your meds and supplements later. I'm still waking up. Thanks. D

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  • 2 months later...

I had crushing fatigue and weakness when my POTS was severe 10 yrs ago. It would literally exhaust me to walk from the bedroom to the living room. Since that very bad time, things have improved for me immensely, other than flare ups now and then. I typically do not have that crushing fatigue, yet I can still have crazy HR at times. I think the fatigue has to do (for me) with the extent of blood pooling and lack of adequate blood volume, but I don't know why the weakness and fatigue was so severe that I was homebound and many days bedbound (10 yrs ago).

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I have terrible fatigue. It affects everything I do. Anything that alleviates it (say, caffeine) has a knock on effect and I am more tired afterwards. My life is so utterly compromised by this problem.

I sometimes wonder if those of us on here with NMH (rather than POTS) are more inclined to be fatigued? If so, is it the low BP/HR that makes us feel tired, or is it something physiological that is causing the fatigue and the low BP/HR is just a side effect of that? I think it's the latter b/c when my BP is corrected by medication or stress, I can still feel awful.

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I was not diagnosed with NMH, just POTS. My bp tends to run high when I am in a flare up. Even so, I think my blood circulation is impaired when very sick with POTS to the point that it causes fatigue and weakness. Also I think something causes my blood volume to deplete. It would be wonderful to understand the mechanism(s) involved, wouldn't it.

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I think the blood volume, distribution may have a lot to do with it. Yesterday, I was having a really bad day - with weakness, fatigue, jitters etc. My edema was horrible all over my body. My feet, hands, legs, arms were swollen - I went and put my compression socks and the abdominal binder on that I had not put on in the morning and within a few hours - I felt a whole lot better. I do think that the external compression -helps. It just can't be too strong for me - because it will hike my bp up too much - since I run high any way.

Issie

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