Pots And Tiredness

[Garrettrichard]

Hello guys ,

I`m just wondering do you feel more tired with pots, especially in a flare up?

and what do you do that seems to help make it better? salt, water ect?

I'm just wondering this because i've been feeling more tired lately and im wondering if it would be from the lack

of salt and water I'm taking or a flare up.

Id love to hear your advice.

Thank you. Garrett

[Christy_D]

My son is experiencing more fatigue right now. He says he is always tired. I figured it was due to the heat and POTS. He is sleeping more, other than that, I don't know what else to do for it.

He also started doing water jogging last month, a couple of times a week. So the exercise could also being having an impact.

[janiedelite]

Yes, for me it is definitely the heat. The only things that help are diligent rest, fluids, salt, compression, cooling measures, etc. Also, when I'm really suffering but still need to function, a big bowl of egg drop soup from the local Chinese dive can sometimes really wake me up!

[Garrettrichard]

Hopefully those things will help, I have a busy week ahead, Thank you guys so much!

Garrett

[shanying418]

My answer is yes. But I do have doctors who tell me that fatigue is not the primary symptoms of POTS. Personally, I think that's the 2nd annoying symptoms accompany with POTS. I just sleep it off. Sometimes a short walk or moving the legs help. It might pump the blood flow a bit

[toddm1960]

Rest, sleep, relaxing don't help me at all, I wake up just as exhausted. My energy comes in small waves from time to time.

[lissy]

My answer is a big YES.

I just recieved the CHANGES DVD and it actually discussed Overwhelming Fatigue , Even after DX with dysautonomia I kept searching for the reason behind the fatigue and haven't found anything else as of yet...I once had mono???? and a possible viral infection that caused postpartum cardiomyopathy but really those are just guesses for a fatigue problem . Just think if your hr is always elevated from standing maybe thats is exstausting in itself along with the other things that are being overworked in the autonomic nervous system that doctors don't even know yet...

On a positive note during my times of remission I believe the fatigue is the main thing that just goes away like a light switch went off.

Lissy

Also nothing has helped with this problem not bedrest, activity or anything it has a mind of its own in my body.

[Garrettrichard]

I tried just upping my salt and water intake by about double and got up and moved around and it seemed to help a lot!

Thank you guys for the suggestions.

Garrett

[potsgirl]

It sounds like chronic fatigue syndrome to me, which often occurs in people with POTS>

[Garrettrichard]

I know someone with CFS, The tiredness I'm talking about is much more mild.

[janiedelite]

I tried just upping my salt and water intake by about double and got up and moved around and it seemed to help a lot!

Thank you guys for the suggestions.

Garrett

So glad! I've had to limit my activity to solely indoors and I'm finally feeling a bit better myself. Whatever works!

[Brye]

EXHAUSTED!! All the time!! That's one of my worse symptoms. I had a couple fatigue exacerbations and one was mono and the other was a vit D deficiency. I know one of the side effects of my beta blocker is fatigue as well. I think I'm doomed to be tired. Treating the vit D deficiency and recovering from mono did help. Both those caused me to be so tired my memory started to go.

Brye

[Garrettrichard]

I also had mono a couple years ago in grade 8, It sure does take a lot out of you.

Funny thing was I was never really tired with mono, even though that's one of the main complaints.

Judging by how my tiredness went away yesterday I think maintaining hydration and salt intake

as well as getting up and getting the blood moving helps with the tiredness a tremendous amount.

Also let me know if any one else has more suggestions or ideas id love to hear them

Garrett

[dianne.fraser]

Garrett

My hottest tips for managing dysautonomia-related fatigue are:

General dysautonomia management: fluids (drinking at least every three hours; some people find sports drinks really helpful); putting salt on your food; compression stockings (not the coolest look); if the weather is hot, try to stay cool; if the weather is cold, try to stay warm; get plenty of rest and plenty of unbroken sleep; eat a healthy diet with reduced carbohydrates

Treat symptoms that can be treated: eg panic attacks; nausea; night sweats; neck soreness/soreness at the back of the head - these symptoms are very treatable in some people, and can add to fatigue if they're not treated

Manage any allergies: sometimes allergies can increase fatigue

Finally, avoid things that aggravate your illness: it can take a bit of trial and error to identify these, but the list might be headed by 'lack of rest', and 'too much activity or exercise'.

Good luck and best wishes

Dianne

[Garrettrichard]

Thanks Dianna! those were some great suggestions, I really appreciate

all the advice you guys are giving me, Thanks!

Garrett

[toddm1960]

Brye you could be living my life, and the correct word is exhuastion this is not tiredness or fatigue. You may want to look for a mitochondrial cause of your POTS. Beta blockers have been added to the list of mito toxic drugs, when I take them I can just feel the exhuastion getting deeper and thicker.

[summer]

Hi Garrett,

I always find I have more fatigue in the summer when it is warm. You are right to increase salt and water, and this will help. Keep it up over the summer until the weather cools a bit. On days when I am feeling a lot of fatigue from the heat, I try to go somewhere where I know there is air conditioning (like the mall) for a while. I find if I can get cooled down, it relieves that fatigue a bit. Also, it can be helpful to try to plan activities for the cooler parts of the day - morning and evening.

Summer

[Brye]

Brye you could be living my life, and the correct word is exhuastion this is not tiredness or fatigue. You may want to look for a mitochondrial cause of your POTS. Beta blockers have been added to the list of mito toxic drugs, when I take them I can just feel the exhuastion getting deeper and thicker.

Thanks for the tip Toddm!! Good to know. I really think the atenolol is contributing but going without it isn't pretty at all!!! I'll look into that! I've been diagnosed with POTS and that part is fairly clear but I haven't pursued a cause yet. That's going to require some traveling and some serious work for insurance approval. I'll look into the mitochondrial cause for sure. Is this the cause of your POTS?

Brye

[toddm1960]

Yes my POTS is secondary to mitochondrial dysfunction, many members have found the primary cause of their POTS. In my case so many doctors didn't know about POTS and once I found I had it they washed their hands of it and said you need to learn to cope. I think once we have a POTS diagnosis we need to continue to look for what could be causing it. I was lucky in a 12 month span I got my POTS and mito diagnosis, now I pushed it all and pushed the doctors and insurance company for it. Had I sat back I would have been stuck with a CFS dx and CBT and GET......pretty close to blood letting of the 1800's for our disease.

[jimells]

Hi Todd,

How does one get a diagnosis of mitochondrial dysfunction? What kind of doctor does that, what kind of tests might they do?

Overwhelming fatigue, as in, "I'm too worn out to work anymore today", is my worst complaint. As opposed to overwhelming drowsiness, which I have some days, but not every day. And course, how could I forget the migraines. But the constant fatigue, never feeling rested, is the worst.

Your post was very helpful. Thanks for writing it.

[toddm1960]

Joe in my case I had a local neuro who worked with me through most of this, he sent me to a geneticist first. She looked over my family history and current symptoms and agreed mito testing was appropriate. After much online searching I felt fresh tissue muscle biopsy was the best route and picked a location for that testing. This months webinar on mitocation.org is about muscle biopsy testing. I hope you find the answers you're looking for.

[Guest tearose]

Of course we experience tiredness/ exhaustion/ fatigue from POTS/dysautonomia!!!

That doctor is not enlightened.

Our bodies are working so much harder to keep in "balance" I was walking more regularly before it got incredibly hot and I needed MORE nap time while active.

I am still active around my home right now and need no or few naps.

[erik]

Fatigue is one of my key troubles, both physical & mental. In general it seems to follow it's own pattern except for obvious things like letting myself get dehydrated. I'm also pretty sensitive to heat. Sometimes I push through it and come out fine (or better) but sometimes it seems to bite me (which many people report... exercise intolerance basically). I don't know how to defeat it. Sometimes a decent bit of rest can turn things around for me. Extended rest seems to cost me though, so I typically push some activity even when not feeling well.

[jimells]

Joe in my case I had a local neuro who worked with me through most of this, he sent me to a geneticist first. She looked over my family history and current symptoms and agreed mito testing was appropriate. After much online searching I felt fresh tissue muscle biopsy was the best route and picked a location for that testing. This months webinar on mitocation.org is about muscle biopsy testing. I hope you find the answers you're looking for.

Thanks for the help, Toddm. The answer I'm looking for right now is, "Where the Heck is the neuro referral you promised me??"

Erik, is it ever not hot in Hawaii?

[toddm1960]

Joe I went through 30 doctors in a 4 year period before I found my current team, most doctors you see don't know much about it and are to busy to look things up. My current team is awesome, they listen to information I get from the internet, look things up themselves. They email me back when items they find. These types of doctors are worth their weight in gold!! If you don't like what your doctors has to say, or they don't want any of your input..........find a new one.