I Know This Is A Common Question But........

[lissy]

This fatigue has taken over my life is it really common for POTS PEOPLE to stay fatigue and brainfogged every minute of the day?????? I am starting to want more and more tests done to find out this problem and I need to know if I'm wasting my time looking for answers if POTS is the answer.

Another thing this is like the 3rd time I asked this --------- What is a FLARE and do they happen randomly please explain please.

Thanks Lissy

Hope you all are enjoying your Friday night

[erikainorlando]

Honestly I don't have flaress...everyday is the same for me. Somedays are better than others but pretty much I am only able to be upright and moving o many hours then I have to recline...I always pay dearly for activity.

Pretty much feel like I have run a marathon most every minute of any day. Not sure if that qualifies as fatigue...but anyway...so that is my experience for what it is worth

Erika

[lissy]

Honestly I don't have flaress...everyday is the same for me. Somedays are better than others but pretty much I am only able to be upright and moving o many hours then I have to recline...I always pay dearly for activity.

Pretty much feel like I have run a marathon most every minute of any day. Not sure if that qualifies as fatigue...but anyway...so that is my experience for what it is worth

Erika

Thanks for responding, I hope you have some improvement very soon:)

[ana_22]

I pretty much feel terrible all day. 99% of my day is sitting down or laying down.

I feel dizzy almost all the time. nauseated and eating is a struggle. when i have 'flares' its usually after eating or after i've done too much (stood for a few minutes more or bent over to pick up something more than i should have). In a flare I will become tachy, sweaty, sensitive to light, weak and maybe palps and i will need to lay down until it passes.

lately i have noticed that itoo am getting weaker, my legs and body feel weaker.

im not sure but i think cos i have been sick for 19 months and not moving as i would be maybe im deconditioned now?

the most id do in a day is walk up and down the stairs a few times, walk around rooms in the house a few times and walk from the car to the dr if i have an appt.

i wonder if this is too little activity and now that im deconditioned thats why i feel weaker?

do you think thats why you feel weak?

[lissy]

I pretty much feel terrible all day. 99% of my day is sitting down or laying down.

I feel dizzy almost all the time. nauseated and eating is a struggle. when i have 'flares' its usually after eating or after I've done too much (stood for a few minutes more or bent over to pick up something more than i should have). In a flare I will become tachy, sweaty, sensitive to light, weak and maybe palps and i will need to lay down until it passes.

lately i have noticed that itoo am getting weaker, my legs and body feel weaker.

I'm not sure but i think cos i have been sick for 19 months and not moving as i would be maybe I'm deconditioned now?

the most id do in a day is walk up and down the stairs a few times, walk around rooms in the house a few times and walk from the car to the Dr if i have an appt.

i wonder if this is too little activity and now that I'm deconditioned thats why i feel weaker?

do you think thats why you feel weak?

Well I have been thinking that something else might be going on inside my mysterious body I have had thyroid tested a few times since I've been sick almost 2 years severely. And I went today to have another one done I'll have results Monday This fatigue is really unexplainable its everyday all day no matter how much I sleep or what activity I do, I have 2 small children so I'm always running after them so I'm not really deconditioned , maybe alittle cause I never do much walking or exercise. I don't know what it is I just keep getting a feeling something else is wrong with me. My GP is not looking into anything and I'm at a stand still all I know is one cardio said I have dysautonomia and he said I'd never get better and couldn't tell me how he came to that conclusion so I went to Cleveland clinic back in July they said based on symptoms and looking over my TTT and 24hr monitor I had POTS but needed to preform all the testing to give me a formal DX so I go back in January for the test. But reading almost everyones paragraph at the end of their posts they have many DX's of different things and they must have had some willing doctors to find out all the illness. I feel like I have to be my own doctor and find stuff with the help of the PC and go back to doctors with what I think is wrong with me its so exhausting!!! I just wish I had some simple answers. I guess thats why I come here many times a day to read how everyones feeling and what they deal with because I don't know what else to do and I don't think that all the people on Dinet have been asked research questions when we see these specialists, so really every doctor has a different set of opinions.

Its like guess work no known cause no known prognosis they do what maybe 10 tests and thats it take this and see ya in 6 months its just unbelievable to me and really theres so many illness that are looked at the same way. I really just wanna know if I have another disease causing dysautonomia who is suppose to find it ???And are most people with POTS dx with 5-20 different things? Ohhhhhh I guess thats why they say very intelligent people get this because we are the ones researching everything and trying to piece it together

[potsgirl]

My doctor believes that auto-immune diseases tend to bring on other auto-immune problems, and that's been the case for me so far. It takes time, and when new symptoms show up, you can have them tested. One belief is that if you have dysautonomia, you also probably have CFS and a possibility of developing fibromyalgia, too. I also have interstitial cystitis, and a chronic pain issue. My kidney function is low due to poor blood perfusion. I had to have my gallbladder out. I have ischemic areas (an abnormal amount) in my brain due to lack of blood flow - hence, 'brain fog'. But usually you don't find these things out immediately...they can develop over time, and perhaps you won't even get another illness. There are people on the boards like that, too.

Good luck!

Jana

[HoudiniCat]

I can sympathize with you Lissy. When I first got sick and then finally got a POTS dx, I was convinced that it was not just POTS alone ? that there had to be something else wrong to be causing all these symptoms. And then to have docs kinda dismiss you, write a script and send you on your way was just amazing. Once an ER doc (who was looking up POTS on his computer) was asking me about the different docs/tests/meds I was on and was getting so confused. Finally he questioned that if all the docs I see were like players on a football team, then who was the head coach . . . who was in charge of coordinating everything and developing the plan? And I said ?Me!?

I finally got in with a great POTS doc who explained a lot. Said although I?ve got touches of CFS, NCS, NMH, that it?s easiest just to classify them all under the POTS umbrella. He said he thought I was one of the ones who will never know the hows/whys as to how I got POTS and I could pursue more testing (of which I did numerous other tests) or try and come to terms with it and try to develop a treatment and lifestyle plan.

In the beginning there were days and weeks when I had extreme fatigue and constant brain fog but as I?ve been getting better, those symptoms seemed to have improved. I still get different symptoms from time to time and I guess you could classify them as ?flares? but after dealing with this for several years I just think of it as having some days worse than most (or some parts of the day worse than others). Hang in there!

[lissy]

I can sympathize with you Lissy. When I first got sick and then finally got a POTS dx, I was convinced that it was not just POTS alone ? that there had to be something else wrong to be causing all these symptoms. And then to have docs kinda dismiss you, write a script and send you on your way was just amazing. Once an ER doc (who was looking up POTS on his computer) was asking me about the different docs/tests/meds I was on and was getting so confused. Finally he questioned that if all the docs I see were like players on a football team, then who was the head coach . . . who was in charge of coordinating everything and developing the plan? And I said ?Me!?

I finally got in with a great POTS doc who explained a lot. Said although I?ve got touches of CFS, NCS, NMH, that it?s easiest just to classify them all under the POTS umbrella. He said he thought I was one of the ones who will never know the hows/whys as to how I got POTS and I could pursue more testing (of which I did numerous other tests) or try and come to terms with it and try to develop a treatment and lifestyle plan.

In the beginning there were days and weeks when I had extreme fatigue and constant brain fog but as I?ve been getting better, those symptoms seemed to have improved. I still get different symptoms from time to time and I guess you could classify them as ?flares? but after dealing with this for several years I just think of it as having some days worse than most (or some parts of the day worse than others). Hang in there!

thanks for response it made alot of sense to me:) and I was curious how long have you been with POTS and how long did it take to see improvement with the fatigue and brainfog ???

Lissy

[lissy]

My doctor believes that auto-immune diseases tend to bring on other auto-immune problems, and that's been the case for me so far. It takes time, and when new symptoms show up, you can have them tested. One belief is that if you have dysautonomia, you also probably have CFS and a possibility of developing fibromyalgia, too. I also have interstitial cystitis, and a chronic pain issue. My kidney function is low due to poor blood perfusion. I had to have my gallbladder out. I have ischemic areas (an abnormal amount) in my brain due to lack of blood flow - hence, 'brain fog'. But usually you don't find these things out immediately...they can develop over time, and perhaps you won't even get another illness. There are people on the boards like that, too.

Good luck!

Jana

Thanks Jana ,

I know when all this started they suspected lupus but only one abnormal blood test and that fixed itself by time I was suppose to retest. I guess this is just a long process... I have chronic pain only in my shoulders like muscle pain and its daily but no other pain so far. Is there a autoimmune POTS all by itself?

Lissy

[prettyinpink]

I HATE hearing this when i ask my doc how he long til he thinks (insert symptom) will improve and he always says he can't predict. While I hate hearing it, I've found it to be very true. Everyone with POTS is so different and is affected differently by medicines, exercise, diet changes, etc thats it impossible to know if or how much a symptom will improve. I've learned that it doesn't mean to give up hope that my symptoms will improve but rather to enjoy life as best as I can at the level I'm at because I don't want to waste my life waiting for an improvement that may never come. I still exercise and try new meds all the time but, I try not to lay around thinking once my fatigue is better then I'll call my friend because i don't want life to pass me by. It doesn't mean I can do everything but i try to do what i can and limit my moping lol.

[lissy]

I HATE hearing this when i ask my doc how he long til he thinks (insert symptom) will improve and he always says he can't predict. While I hate hearing it, I've found it to be very true. Everyone with POTS is so different and is affected differently by medicines, exercise, diet changes, etc thats it impossible to know if or how much a symptom will improve. I've learned that it doesn't mean to give up hope that my symptoms will improve but rather to enjoy life as best as I can at the level I'm at because I don't want to waste my life waiting for an improvement that may never come. I still exercise and try new meds all the time but, I try not to lay around thinking once my fatigue is better then I'll call my friend because i don't want life to pass me by. It doesn't mean I can do everything but i try to do what i can and limit my moping lol.

Good points Prettyinpink . I pretty much don't want to waste my life either and I definitely don't wanna set my health back in noway but have realized no matter what I do this condition has a mind of its own.. I'd like to know how have you handled the meds ??? I've been scared to death to try them. I'm SOOOOO sensitive to everything and I'll never know unless I try I just can't bring myself pass the fear.

Lissy

[yogini]

Not to say that you don't have anything else, but severe fatigue can be a symptom of "just" dysautonomia. It can also be a side effect of meds. At first I was really tired b/c my HR was to fast and my BP was too low. Then I got on beta blockers to help with tthose symptoms, but the betas made me tired. Salt and compression hose helped some. I finally got rid of the extreme fatigue by getting on Paxil and weaning of betas...and a little caffeine doesn't hurt. I hope you find something that helps with your energy!

[prettyinpink]

I know I'm so sensitive to meds too. I guess I've decided that I have a doctor I trust and I want to get better so I need to try meds. I always start with the lowest possible dose, on a weekend when I won't be busy. For example, my doc wanted me to try propanolol. I started with 5mg which is 1/4 of the smallest table available lol. It affected by blood sugars too much to continue taking it but, because it was such a small dose I didn't get into a medical crisis. I like to research medicines before I take them to learn about the common side effects but, i don't suggest this if you think knowing the side effects beforehand might make you more anxious about starting or trick your brain into thinking you are having side effects if its really anxiety about the possiblities.

If you are starting a new med that you are really worried about maybe you could hang out in your doctor's waiting room for a while after you take it?

What medicines are being prescribed?

I would also just start 1 med at a time.

Has your doctor offered some other options for you try before meds? Like salt, water, exercise, compression hose?

[janiedelite]

I think Prettyinpink has offered some great suggestions. Most of us have odd reactions to medications. And the fact that the meds prescribed for POTS are all used off-label. But I've recently started some new meds. I start with the smallest dose and log how I feel each day after I take it. That way I can remember how I react to each med in case I want to try them again later.

So far, I'm having success establishing a medication regimen. I just add one med at a time, though. It takes forever!!!! But I'm desperate to have a better quality of life, and so far I've gotten some relief from my symptoms with these new meds.

As far as being anxious if there is something really wrong with you, I would hope that your primary care doc or Cleveland Clinic would try to rule out the most common underlying causes of POTS. I went to Mayo Rochester earlier this year and the autonomic neurologist ran about a week's worth of standard tests for all things that can cause POTS as well as the autonomic testing. Some tests came back abnormal, so I stayed for a week of follow-up testing and was diagnosed with post-viral POTS with small fiber neuropathy (you can see my signature for details).

And you can see that I have many diagnoses, but most of these are just labels for my various symptoms resulting from POTS and neuropathy. Prior to getting diagnosed with POTS I had a bunch of diagnoses for my symptoms, but no diagnosis for what was causing my body to fall apart until I was properly evaluated at Mayo.

[Brye]

This is such a common question with no standard answer. I have 4 young kids and I am so tired all the time!! Not only do I have 4 young kids I'm trying to deal with POTS that causes excessive fatigue and my beta blocker to control my POTS which also causes excessive fatigue. Those 3 factors right there make me feel doomed to be tired all the time. I've been diagnosed with POTS but so far have seen only cardiologists. I've tried to get back in shape but I'm also a fainter. I just spent Thursday night in the hospital after fainting at my physical therapy appointment. The cardiologist who admitted me reminded me there is no cure and there really was nothing that could be done for me. Very reassuring!!

There was a stretch when I was running a fever along with my fatigue and after scanning everything they could think of to find a cause it ended up being mono which there is no treatment for anyway. I guess all I have to offer is understanding. I'm so tired of being exhausted and there doesn't seem like there's anything anyone can do about it. I'm thankful to have 4 healty kids and at the same time very frustrated that I can't enjoy them as much as I would like. Hope you find an answer and if you do please share it with us!!

Brye

[potsgirl]

Some of us are so sensitive to meds that even taking that 5 mg dose is too much. I would start with 1/4 of that 5 mg dose!

[erik]

... Ohhhhhh I guess thats why they say very intelligent people get this because we are the ones researching everything and trying to piece it together

I know I went long time in the dark. Makes one wonder how many fellow patients are undiagnosed or misdiagnosed... "out there", left behind in treacherous medicine-land... wandering, starving, lonely, confused... or trembling in a POW camp somewhere where they blast "It's all in your head" on the loudspeakers 24/7.

We should air drop some salt packets and pro-POTS propaganda leaflets.

"Leave no patient behind" -- Autonomic-Forces credo.

[ramakentesh]

My doc told me they think most patients remain undiagnosed or diagnosed with things like CFS, etc. - they think its possibly 1 in 200 people. OI is the second most common circulatory presentation.

[potsgirl]

Love the salt packet and flyer idea.

[Griffin]

I came to POTS via CFS/ME - was diagnosed with that first. Then picking out specific symptoms led to POTS. Withmy heart racing double time (and still racing when asleep) my doctor said it would be contributing to the endless fatigue.