Exhaustion

[lgtaylor100]

Lately I've noticed that my exhaustion is getting worse. I don't know if it is because I am trying to do more things and it is backfiring. I describe my exhaustion as the feeling you get when you are on a flight all night, haven't slept and it is now the next night. This feeling usually comes on after any activity. Yesterday I ventured out to the swim club with my daughter and grandchild. I stayed in the pool for about a half hour which actually felt good because of the cold water and about an hour later had the kind of exhaustion that I just described. It is really starting to scare me. Up to recently I felt better most evenings but now I am just exhausted and usually fall asleep at about eight o'clock. I have also noticed that I am more tachy and that my morning resting hr is in the 90s. I don't know what my standing heart rate is because my machine gives me an error message when I stand.

I am not sure if the fatigue that others describe on this forum is like what I experience. Any thoughts or suggestions.

Lynne

[Sarah4444]

I know what you mean about there being different kinds of fatigue with this. All I can say is that my worst fatigue turned out to be compounded by hypothyroidism that my endo treats based on symptoms, not just lab results. I am now not falling into exhaustion-comas, but still struggle daily with fatigue, weakness and low energy.

[HopeSprings]

Me too - by 8pm I am DONE. It's a bone crushing exhaustion. I go to bed and it feels sooo good to just lay my body down. Oh how I love my bed. I have no explantion, just wanted to say I can relate to the feeling.

[potsgirl]

I'm done for the day by 6 pm! If I try to stay up longer, I hit a 'wall' where I feel extremely sick. I try to push it sometimes, but then the next day I suffer. I get through my days with a nap after lunch and an early bedtime. Then it's up at 5:00...ugh.

[toddm1960]

There are somedays when I wake up with that bone crushing exhaustion (that's a medical term ) and I have it all day or sometime multiple days. It's by far my worse symptom and just small amounts of activity bring it on, and all I can do is lay down.

[Chaos]

Some days the "exhaustion" is so great that even lying down doesn't feel restful enough. Don't know how else to explain it, but I think there is an "achy" component as well(where everything hurts in addition to being "tired") so that even when I lie down, it doesn't provide the relief I wish it would.

[comfortzone]

Count me in with the fatigue - life would be grand if it was spent utterly horizontal..... I simply can only 'cope' so long in a day - and if I don't lay down I will just stop functioning period - practically cry till I can finally lay down. Sometimes rest is super helpful and I can get going for awhile at night -- But lately - things are worse - and I never get the initial energy .... Soooo frustrating. Often it seems purely d/t dysautonomia - yet with proper medication - some days the fatigue is there with almost normal vitals. Day before yesterday walking in a mall - I literally couldn't walk any further - found a nice seat and couldn't muster energy to move for nearly an hour.....while sipping cold tea -- I nearly called mall security - it was so scary. But in the end I managed the walk back to the car and pressed on... Now tonight HR is 80ish laying down and 113plus with a stand - but I had no more Clonidine - so missed a.m. dose - got rx filled tonight - took 2 and I 'feel' better but the fatigue is 'crushing' still.......... Blood Pressure may be partly to blame up and down all day long

I should well be used to this - yet I doubt I ever will -- my symptoms became rather severe perhaps in 2006-7 but I didn't know a reason - a couple years later learned of EDS-hypermobile type and the accompanying battle with vitals that vary an awful lot in a day - labile b/p - tachy and then the opposite...

I really hate that anyone else deals with this - but most assuredly I am oddly comforted that I'm not the only one in the world with this ridiculous crazy way to try and function in life........heaven help us all! I hope everyone feels better very soon!

[hilbiligrl]

Hey Y'all,

I've had to sit on this one for a while..... this is my first and foremost symptom for the past 8 years. I describe this as NOT fatigue. For me, it's a feeling of pure weakness, severe exhaustion but from no cause whatsoever. I feel this way 24/7. I like some of the ways you guys describe, as i would agree, an 'exhaustion coma' could describe me easily, as well as, the 'bone crushing exhaustion'. The exhaustion is relentless most days, some days are only tolerable. As i said it is ever present. But, i do have severe attacks that at one min im up walking somewhat, then the next min i can't even walk, talk, stand, grip a pen, can't breathe..... that's when the severe weakness is felt what feels like inside my very cells and skin and insides..... so hard to explain. But as i once posted, i can't stand that docs (when i describe it this way) they generically put down 'fatigue' and that's it..... ugh, makes me wanna slap them! And as i said before, it's not fatigue, as i have to be doing something first initially, in order to be fatigued.... am i not right?

Usually, during severe episodes that can last hours, days or weeks.....i lay flat, panting for breath, no strength to open my eyes or even speak.... no strength to move anything, not even a finger. It's as if im paralyzed from head to toe... usually crying due to the intensity of what i feel.... its treacherous and the suffering is unreal and unfathomable.

However, when not in acute episodes, my days are spent very tired, weakly, no energy, exhaustion...... i have to lie down frequently..... or be bed ridden mostly.

I do have some good days too, but as i said, the exhaustion to the severest degree is always ever present..... it has become a part of me, my odd friend, yet my worst enemy for the past 8 years or more..... something no doc seems to understand. I have to insist again and again that I AM NOT DEPRESSED...... im smart enough to know the difference..... depression exhaustion, is SO VERY DIFFERENT than ours.... so very different.

I do wish I could figure out what my 'acute' episodes are though..... im thinking some sort of seizure activity, or is it mg, or is it mitochondrial disease or an mcad attack???? I have no idea...... but this stuff gets quiet scary for me, and i just hate it.

My mind is rambling.... i know there was something else i wished to say but now i can't remember.... lol.

Hope this helps.... as i have wanted to ask this very same question to everyone on here..... so glad you posted it!!!

mucho blessings

tennille

[abetterjulie]

I also have this. There are days where all I can do is sleep and pee. I find that the heat makes it much worse, so maybe that is why you feel it is getting worse now that it is warmer outside? It improved greatly when I was on the Midodrine, but now I am back to square one. It is so frustrating!

[Godsgal]

I have gotten this many times and I have to say it's much worse when I don't go to bed nice and early the night before. If I don't get a full night's rest, it is absolutely awful. Sometimes, around 3 or 4, it gets to the point I can't even lift my arm to pick up a glass of water. It is scary. But what helps me is resting, eating food, believe it or not carbs like a potato and some meat, along with resting with my feel elevated for an hour or so helps make it dissipate.

[hholmes13]

I can definitely relate to many of you with the exhaustion. I can't believe some of you have been dealing with this for such a long time! I've only been dealing with this for a little over 3 months now and it gets frustrating. I feel tired all of the time, regardless of how much I sleep/nap. My very worst days get so bad that even standing is difficult because I feel so weak/tired. I feel like I could just sleep for a week straight and still not feel rested. I was very active before all of this started (I was training for a half-marathon), so I get very frustrated not being able to do the things I enjoy. The strange thing though is that although I feel exhausted, I have a really difficult time falling asleep some days. It's almost like I'm so tired I can't sleep or when I do, it's very restless. Does anyone else get this?

Heather

[hilbiligrl]

Hey Heather!

So sorry you are having it rough. Im having a rough patch myself (as it's common to have good days/bad days... good weeks/bad weeks.... and so on and so forth). I have the same issue as you for a good 8 years.... that rest that i sooooooo feel i need, no matter HOW MUCH i rest, i just DONT rest. If i sleep, i never wake up feeling energy, refreshed or rested. I usually feel much worse and much more exhausted than when i went to be previously. No matter how many naps, or how long im bedridden (this bout for a good week or two)... i still dont feel that my body has rested. I used to go go go all the time. I was going to pharm school, straight A student in college, tow truck driver (my hubby owns a towing business now for 17 years) and doing all kinds of stuff, but a bad spell hit again in oct of 2009 and ive basically been down since. Anyways, you will find that insomnia is a biggie on here. You could say that I have had chronic to severe insomnia for a good 10-12 years now, and no med helps. It's real crap, when you feel so so so so tired and you never can sleep anymore, cuz usually, thats when i feel restless..... so feeling tired, exhausted to the gills, almost in an exhaustion coma, yet not be able to sleep and also have to deal with 'that intense restless' feeling..... well, it's just overwhelming. I know how you feel......

Hoping you get better fast! Just remember, if you have any question, feel free to ask on here! Someone always jumps in to answer!

best wishes!!

tennille

[Libby]

Exhaustion has been a huge problem for me lately. My job sometimes requires a lot more time on my feet than I'm used to. I can do it, as long as I make sure that I'm never just standing still (at the very least, flexing/clenching my calves) and that I've taken my midodrine. Doesn't stop me from getting kind of stupid after a little bit, but it's not a job that really requires my complete attention so it's not a big deal.

But I pay for it afterwards. I am just out of it afterwards for a good 10-12 hours.

Yesterday, I gave myself a 'break' from a few meds so I could just lay around on my day off. Hello bad decision. I've been having insane nightsweats for the last week or so, and I really just wanted to get some sleep...By yesterday evening I was seeing double I was so exhausted. Definitely got my sleep...and I have a feeling I'll be getting a lot more of it over the next few days.

[Chaos]

The strange thing though is that although I feel exhausted, I have a really difficult time falling asleep some days. It's almost like I'm so tired I can't sleep or when I do, it's very restless. Does anyone else get this?

Heather

I certainly have had it. It's one of the most frustrating things in the world, because I always think if I could just get some good sleep, I'd be "all better" (LOL). Or, at least that's what I use to think. It was incredibly annoying to be SO exhausted and then just lie there...day or night...and then be so "fatigued" that all I could was lie there with my eyes closed...but not sleeping...but waaayyyy too tired to be able to do anything like read or watch TV or anything much besides listening to the radio.

Luckily I'm not currently having this issue and I'm extremely grateful for that fact. But every time I flare up again, it starts all over.

Hope you get through this phase quickly!

[runningshoe]

The exhaustion comes and goes for me. Sometimes I am on the couch all day. Some days I feel almost normal. HOWEVER I want to add that ever since I read a post this winter on exercising on a recumbent bike I drag myself to the gym and push those pedals. I need lots of recovery time but I am convinced it is helping. The resting sometimes just makes you feel even more lethargic. I am fortunate because I don't faint so I can push myself a bit. The exhaustion that hurts is the worst - everything just feels wrong - for that I take medication that will help me sleep. Hang in there!

[GingerA]

Exhaustion is one of my worst symptoms. Usually it comes after a day of activity. I am still learning my limits. I have had to give up my job because some days I didn't even have the energy to get dressed. The greatest thing that I am learning through this is that I can live my life on my own terms. If I need to lay in bed all day (or for several days) I do.

[lizababy]

It improved greatly when I was on the Midodrine, but now I am back to square one. It is so frustrating!

I have noticed this too, Julie! I have been getting very nauseated, gagging, and vomiting since I have been on midodrine 5x a day. When I cut back on the dosage to only taking it when I was getting out and moving, my energy waned so poorly that I was literally down for a week straight. In that week on my couch, I started back on my strict midodrine schedule. After 8 religious days of taking it 5 x a day, today is the first time I was able to actually wake up before 10 am and make it out of my house. Most days, I could hardly walk to the bathroom and was intentionally putting that off as long as humanly possible! Back to doctor next week I go :-)

[enko]

I would describe it like this:

imagine a little bottle named "life energy". It's only one quarter full. On good days I can use that little that is left, getting some back by having naps through the day. On bad days I feel like that someone opened the bottle and poured it all out in matter of minutes.. In that case sleeping through day doesn't really help.