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Does Anyone Feel Like This?


gillian502
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I've had POTS and NCS for 3 years now, but whenever I read about all the symptoms involved in my illness, I feel somewhat different. Yes, I have the typical extreme tachycardia and pre-fainting feelings (and total fainting though that's rare as I usually can stop myself by sitting) but I am mainly disabled by symptoms that I haven't heard anyone else describe. I was wondering if this sounds close to anything you all have ever experienced:

I feel so tired within my body after only an hour or two of mild, boring, normal exertion. This is the main reason I cannot hold a job or even sociallize with friends, or anything else for that matter. The only way I can describe it is, I go to the grocery store, for example, and my legs feel heavy and tight and my lower back around the s.i. joint feels pushed in and my feet hurt almost immediately. Walking and being upright just exhaust me. If I'm out for an hour, by the time I get home, I swear, and this is no exaggeration, I feel in my body as if I have done a long, hard workout. I don't feel sleepy tired; I feel tired in my muscles and bones, all heavy and achey like I've been jogging for 10 hours and then worked out with weights. All I can do is lie on the bed and recover from having gone outside for an hour.

I've told this to my doctor, who is a cardiologist but not a POTS specialist, and he doesn't get it at all. I don't get it, either, really, but this is how it's been for 3 years. I feel like I've had a 10 hour day, full of physical workouts, when all I've done is gone to the store, or a movie, or visited a friend, for an hour or two. For me a 2 hour day equals a 10 hour day. Why does my body feel like it's been phyically working out all day long when all I've done is leave the house? This has prevented me from being on feet almost at all and having any kind of a real life for 3 years now.

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no, this is how i feel too. even a wheelchair ride for an hour makes me feel this way. it is hard, because some times i have trouble making people believe me as well.

I have not fainted in a month and a half, so sometimes i get so sick of hearing how im doing better so when will i be able to do____? they do not get that the fatigue is worse, and think i am just trying to get out of doing whatever they want. i was always the go to girl for whatever needed to be done.

Joy

I've had POTS and NCS for 3 years now, but whenever I read about all the symptoms involved in my illness, I feel somewhat different. Yes, I have the typical extreme tachycardia and pre-fainting feelings (and total fainting though that's rare as I usually can stop myself by sitting) but I am mainly disabled by symptoms that I haven't heard anyone else describe. I was wondering if this sounds close to anything you all have ever experienced:

I feel so tired within my body after only an hour or two of mild, boring, normal exertion. This is the main reason I cannot hold a job or even sociallize with friends, or anything else for that matter. The only way I can describe it is, I go to the grocery store, for example, and my legs feel heavy and tight and my lower back around the s.i. joint feels pushed in and my feet hurt almost immediately. Walking and being upright just exhaust me. If I'm out for an hour, by the time I get home, I swear, and this is no exaggeration, I feel in my body as if I have done a long, hard workout. I don't feel sleepy tired; I feel tired in my muscles and bones, all heavy and achey like I've been jogging for 10 hours and then worked out with weights. All I can do is lie on the bed and recover from having gone outside for an hour.

I've told this to my doctor, who is a cardiologist but not a POTS specialist, and he doesn't get it at all. I don't get it, either, really, but this is how it's been for 3 years. I feel like I've had a 10 hour day, full of physical workouts, when all I've done is gone to the store, or a movie, or visited a friend, for an hour or two. For me a 2 hour day equals a 10 hour day. Why does my body feel like it's been phyically working out all day long when all I've done is leave the house? This has prevented me from being on feet almost at all and having any kind of a real life for 3 years now.

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Gillian,

I feel this way too.:huh: Your not alone, in fact I think I posted saying something like I feel as if I ran 10 miles and all I did was walk my child to her bus stop (end of the street).

I have not been DX so don't know what's causing me these symptoms. Would it be just POTS or NCS I'm not sure. I would be interested to know if people with just POTS feels this way too?

Take care ((HUGS))

Amber

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Lord, I get this all the time! It's like a nausea/fatigue/dizzy feeling...like I just ran a marathon or donated a ton of blood. It's my most debilitating symptom (I was trying to describe it earlier but couldn't).

I'm not sure if it's an NCS or POTS thing since I have both, but I do know that you're not alone :huh:

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Hi Gillian-

No, you are not alone. I am also very fatigued after doing simple things. There is a strong correlation between orthostatic intolerance, like POTS, and chronic fatigue syndrome and fibromyalgia. My son is DXed with CFS. Check out the symptoms. I bet you qualify, too. It doesn't change much- just a different name for the whole syndrome.

Julie

Lord, I get this all the time! It's like a nausea/fatigue/dizzy feeling...like I just ran a marathon or donated a ton of blood. It's my most debilitating symptom (I was trying to describe it earlier but couldn't).

I'm not sure if it's an NCS or POTS thing since I have both, but I do know that you're not alone :huh:

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Thank you all for your kind replies, it helps knowing I'm not alone in this. I'm wondering, though, if my sense of fatigue is different from what others mean when they say fatigue. My fatigue doesn't make me want to sleep more; it is a physical, muscular fatigue which makes my body feel heavy and feel like I've lifted weights all day. I wonder if this type of fatigue is unusual. I can't imagine ever having a job like this, and being a single girl I will eventually be faced with having to make a living! (right now mom helps me out but that can't last forever.)

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Guest dionna

i get the same thing too. my boyfriend has NCS but he still works out all the time. i used to until i started passing out all the time at the gym. so anyway he is always fussing at me telling me i need to start working out agian and i wouldn't feel that way anymore. he is wrong and i know he is because i still felt the same way when i was working out all the time. but he didn't know me then and he just doesn't listen. whatever- that is just a minor thing- nothing to worry over, right? i just needed to vent a minute. thank you.

you aren't alone and i wish there was something i could tell you that would help you but i don't think there really is. all i can say is good luck and i hope it goes away for you soon.

dionna :huh:

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I wouldn't call the feeling fatigue either because I'm not sleepy, I'm just utterly exhausted and need to lay down. The feeling also only comes on with exertion or emotional stress, not with staying up late or not getting enough sleep...but I'm not sure how others would classify it.

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I feel the same way. I classify the feeling you described as "fatigue"-- especially when i have the muscle aches along with it. When i feel like i'm going to fall asleep, i call that "sleepy" just to clarify to friends and family that there is a big difference. I am also young and share the worries about making a living in the future. I had to stop working because of these symptoms. You described it well by saying a 2hr day "out" is the same as a 10hr day for a normal person. I feel the exact same way. Sometimes i even feel that way without leaving the house! :)

Kristen

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Gillian you have described my most disabling symptoms exactly the way I have tried to tell my physicians and physical therapists many many times. I feel the heavy heavy legs, back pain, muscle fatigue, on and on. This as well as the severe balance problems have caused my life to change overnight, starting over a year ago. I am hoping and praying that someday it will go just as it came.

I have hx of CFS as well and this may be playing a factor, but now with think it seems like FM has developed. Don't know but the symptoms are just as you described as well as many others in addition. :)

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Well, as you can tell by the previous posts, you are not alone. For me, the fatigue is as though I have the flu all the time. I can function sometimes better than others, but for the most part after two hours- I'm done. Regardless of activity, I have learned two hours is enough. I can do more but I pay severely for it- and you're right it is almost impossible to explain.

Carmen

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i also pay when i "overdo" it, and that varies from day to day, seemingly with weather, diet, stress. some days i don't have the fatigue at all, other days i can't even get out of bed to save my life! some days i can work 7-8 hours, some days a flight of stairs is out of the question. the inconsistency and seemingly w/o rhyme or reason of this stuff drives me bonkers! it is so difficult to gauge when is going to be a good day or bad, and how much is too much....and will lead to severe paying for it.

does anybody else's fatigue amount vary day to day?? or am i the only one?

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Guest dionna
i also pay when i "overdo" it, and that varies from day to day, seemingly with weather, diet, stress. some days i don't have the fatigue at all, other days i can't even get out of bed to save my life! some days i can work 7-8 hours, some days a flight of stairs is out of the question. the inconsistency and seemingly w/o rhyme or reason of this stuff drives me bonkers! it is so difficult to gauge when is going to be a good day or bad, and how much is too much....and will lead to severe paying for it.

does anybody else's fatigue amount vary day to day?? or am i the only one?

i wanted to add on the with a little bit of venting... :)

people are always asking me what i am i doing that makes me good somedays and bad others. hello! if i knew i would always have good days. they all think that because of the way i sleep, or the foods or amount of food, or the amount of fluids- which fluids, or whatever is what causes me to have my good and bad days. my dad is always fussing at me. saying "see you should have slept more," or "see you shouldn't have slept so much, that is what is making you more tired." aaarrrggggggggggg. WHATEVER! EVERYONE AROUND ME EVEN STRANGERS SAY STUFF LIKE THAT! mostly they assume i have an eating disorder. people who don't know me think i have a partying problem. hint hint.... i have never partied! not ever!

thanks.

dionna :(

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Hi Dionna,

I encounter the same thing in my family and with my boyfriend (who lives with me and functions as caretaker on days I'm too sick). I think that kind of "you should have done x" response is just their way of trying to control something that is impossible to control. It's very difficult and painful for our loved ones to truly accept how sick we are.

I've been very sick for a year now. Last week my dad was staying with me and he and I decided to go to the bookstore one day. He wheeled me out to the car and parked my wheelchair in the sun (with me in it) while he searched for his keys. From sitting in direct summer sunlight for less than five minutes, I began to have a horrible POTS surge and needed to be quickly rushed back upstairs where I spent the rest of the evening in bed in a horrible POTS hole. The next morning my father was very apologetic and he said "it sounds stupid but I never though of you as very sick until yesterday."

I think us being as sick as we are is terrifying for our families and loved ones, and they sometimes have very strange ways of dealing with their own fear and insecurity about our illnesses.

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Thank you all again. My loved ones also cannot seem to fully understand or accept my illness, and sometimes neither can the doctors. I feel as if my symptoms are so hard to pin down and describe exactly right sometimes, and that none of this really fits into one definite catagory. Feeling like you've had a 10 hour day when it's barely been 2 hours of doing nothing isn't exactly something doctors or other people can easily classify in their minds. That's what leaves me feeling so without hope sometimes. At least now I can see I'm not the only one who feels this way!

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There might be something else going on like CFS or fibromyalgia. I have fibromyalgi, I go through times when it is fine and does not flare and other times, when there is a flare, I can't even raise my arms above my head, feels like I am lifting weights. The same with my legs. I also have lower back problems that when the fibro flares of the back flares, one starts the other off. I also have trigger points and when I am stressed, or wet weather or just plain do nothing, it can flare and cause all types of muscular pain etc.

Just some thoughts. Feel better :D

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I would say that in the early days of when I developed POTS, this is EXACTLY what I felt like. In fact, I had my muscles tested, had bone scans, etc., to make sure it wasn't a mechanical or neurological problem. I think that when the body is exhausted due to chronic illness, it can manifest this in various ways. Some people may literally need to lay down and sleep, while others feel tired in their muscles. I don't feel this as much as I used to, but on certain days, my muscles still get very fatigued, and I feel like collapsing.

There are lots of us who don't have completely typical POTS symptoms, and this makes sense, since this illness is pretty complicated and the causes are many.

Amy

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I was diagnosed with both Chronic Fatigue Syndrome and Fibromyalgia, way before POTS. Then I kept feeling like something else was going on and finally got the POTS dx as well. I do know that if I get enough rest I do feel better, but just walking from the car to the store feels like I am walking through water and so painful then I'm usually better in store. I take ultracet for the pain and it seems to give me an energy boost, maybe cause the pain is gone? I take that at night. I first noticed it in 1995 when brushing hair, cleaning windows, etc that my arms hurt. Then it spread to legs. Sounds like Fibromyalgia and/or cfs. Ive read they can be connected with POTS. Do you still want my cardiologists name in Maryland? He is a very caring doctor and had my diagnosed with POTS in three weeks after 8 years of farting around with clueless docs.

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Even though I don't have a dx, I feel as though I am definitely in the right place!

Thanks for this post, I think it helped others, including myself to feel less alone.

I too get the body fatigue. As well as it varying from day to day.

My husband always puts his two cents in when it comes to how I'm feeling and why. Sometimes I don't

mind but for the most part it just makes me feel worse. I can't help the way I feel, and even when you try your not always able to prevent triggers.

Take care all!

Amber

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Hi:

I know exactly what you are referring to. You describe it really well. I know just what you mean. I get the same way...the severity of it varies day to day, but at it's worst, I can't get out of bed.

I take Provigil (among other things), and I do think it helps. It was WAY worse before I was on Provigil.

Good luck! You are NOT alone.

Violahen

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Yep that's how I'd describe the 'fatigue' from CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), the otehr half of my diagnosis.

I usually say "My BODY is tired" but explain that I am not sleepy at all. Sometimtes my "brain" will be tired (the "sleepy" feeling that normal people get), but not often. It's my body that poops out after minimal activity... resulting in the Must-Lay-Down-Still-For-Hours-Because-There-Is-Nothing-Left-In-Me feeling as if I'd just run a marathon, when really I just finished showering and getting dressed.

:-/

You are not alone at all!!!! *HUGS*

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