Anyone With Debilitating Fatigue?

[medicalenigma]

I was just wondering... all i am doing is sitting at my computer desk and the fatigue i feel is crippling... i have to lay down only an hour after i woke up....i feel so debilitated by this mental and physical fatigue, i have not had the energy to even take care of myself lately.... can this be from POTS?? or perhaps it is from other issues going on with me.

Thanks for any insight. I don't even have the energy to respond to other posts that i wanted to.

-NJ

[lloppyllama]

Hello,

I'm sorry that you're having so much fatigue that is debilitating you like this. I guess what I would say from my experience is that, yes it is from POTS, and that you are going to have this fatigue and its going to continue to get worse until you make yourself not lay down when you are tired, as hard as that is, I know. But that is the only way to make it go away, you need to become more active.

I realize that you might have other conditions that would stop you from doing this, but that is just my suggestion, and what my doctor would say.

While this fatigue may be from something else, the chances are much more likely that it is just POTS.

Sorry if I am coming across insensitive, I really do care and don't want you to be in pain, but I know for me it is really important to not let myself lay down unless I faint. Once I get to that point I usually will let myself, but it is just SO important for me anyways to not "give in" to the pain, weakness, and fatigue.

Good luck! You'll be in my prayers,

Mary

[pat57]

I did, but am very much improved on my current regimen.

Salt, water , some potassium, Norpace. Supposed to take St. Johns wort, and I do, but not regularly.

I have NCS and OH not POTS.

I hope you find something helpful- also.

[Ernie]

Hi,

I used to be exhausted all the time. Now I feel tired all the time. I have what a consider a good medication combination.

I think it takes a good combination of medication, enough sleep, good food and setting proper limits.

[Rachel]

Hi NJ,

Yes, the fatigue can be quite debilitating. I've had dysautonomia for most of my life, and for years I was able to push through. However, I've been very disabled due to fatigue and weakness for almost 4 years now. It is important to keep doing what you can so that you don't become too deconditioned. However, we do need to be careful to not push it too far. If I push it too far I crash, and it can take days or weeks to recover. Balancing activity and rest is tough. You just have to figure out what works for your body personally.

The fatigue can be from POTS, but you also have sevreral other diagnoses that can cause fatigue. The fatigue you are experiencing is probably from a combination of the fibro, CFS, POTS, lyme disease, and the sleep disorder.

It is important to have doctors who are familiar with your illnesses who can help you with treatment (exercise, rest, medication, etc.). I hope you can find the help you need.

Rachel

[ellen]

!!YES!! I had to respond to this one post- usually it takes too much energy to post (I admire all you who do it so often), because fatigue is my main complaint with this illness.

I would love to be able to work,

but I have to SAVE my energy for the basic necessities like making dinner doing laundry, paying bills. I find I have to BUDGET my time and lower my expectations, so at the end of the day I have accomplished at least the minimum. You have to find a balance between "coddling" yourself and being overburdened, both of which can make the condition worse.

I find I have to say "I can't" to people who ask me to do something extra for Them, and say "I CAN" when it comes to doing something for myself, and NOT feel guilty!

[MightyMouse]

that describes nearly all our members...at least those that aren't caregivers or medical professionals providing support to us....

while you may be an enigma medically elsewhere, here, pretty much ever one has, or has had, long periods of fatigue, enough that it can be life altering.

[ajw4790]

Hi!

Fatigue, YES! I think this is most of us! For me the amount can vary, but yes, it can definitly be to the point of not lasting long after waking up or not having the energy to be very productive. I too find that just caring for myself and cleaning and the other necessities drains the vast majority of my energy, and that I often get behind, because I have to pace, and pick and choose. With the amount of energy I have I can do one thing, but I have ten things to do. I then have to decide what is more important and what can wait. It is annoying!!! And frustrating!!!!

I guess it is just important to take care of yourself and try to find what is causing it or what relieves it and try to work to diminish it.

I hope you get some answers! Have you been tested for sleep disorders to see if you get restful sleep? I think that it is a good portion of my problem is sleep... I have been up since 8:30 last night... I no matter how hard I try can not sleep much at night and have to sleep during the day...

Good Luck!

[morgan617]

I posted here and it is now in cyberspace somewhere...I wanted to know if anyone here DIDN'T have horrible fatigue? It's one of my worst symptoms and I don't think I've ever heard anyone say they have lots of energy. There are so many causes for it too, tachy, brady, meds, sleep disorders, depression, pain, surges....I haven't found anything that helps with mine and can't even do caffeine to try and stay alert.

I have begun falling asleep without realizing I was going to. Good thing I don't drive anymore! I think it affects about 100% of people here. Pretty pervasive symptom....morgan

[Guest tearose]

YES! I do get bouts of debilitating fatigue.

I think the word "fatigue" is to us here what the word "snow" is to those who are eskimos.

The eskimos have about 11 different words to describe what snow is!

I think some of the various different kinds of fatigue that we experience is also made up of:

Debilitation

Exhaustion

Poor Memory

No Stamina

Immobility

Activity Intolerance

Brain Fog

Body Temperature Regulation Issues

Digestion Issues

Elimination Issues

Non Restorative Sleep Problems

I am sure others can add to this list.

hang in there,

tearose

[Ernie]

Hi Tearose,

I really appreciate your description of fatigue. I wouln'd describe it any better. Thanks.

[seb10]

Yes yes yes! My fatigue is devastating and debilitating. Especially for me, who is such an active person (got recruited to play DI soccer for college, but couldn't because that's when my fatigue started, hockey-player, hiker, etc. etc. etc.)

It is "nice" to know other people are going through similar things because it helps me to not feel so misunderstood -- but it stinks that people have to experience it. Boo.

I hope everyone is well (or as well as they can be)!

[medicalenigma]

yes, I totally understand..i was totally active also.... was on sports teams, worked out, etc....now i get exhausted simply by standing and sitting up. Sorry you are suffering too. Caffeine has been my savior, however, my resting heart rate is already so high, I am supposed to be totally off it and on beta blockers for heart rate and bp but last time I was on beta blockers, i was unable to drive due to extreme sedation and dr wants me on it long term.. where i live, if you can't drive, you can't get anywhere so total sedation not an option

best,

nancy

Yes yes yes! My fatigue is devastating and debilitating. Especially for me, who is such an active person (got recruited to play DI soccer for college, but couldn't because that's when my fatigue started, hockey-player, hiker, etc. etc. etc.)

It is "nice" to know other people are going through similar things because it helps me to not feel so misunderstood -- but it stinks that people have to experience it. Boo.

I hope everyone is well (or as well as they can be)!

[wireless]

Yep, mine varies a lot, hopefully the sleep specialist that I am finally going to will be able to help my sleep issues. It's not the only cause but maybe I could have more of my better days. I don't think that ALL dys people have debilitating fatigue though, some percentage do manage to have a job and kids and sort of normal life.