Exhaustion - Not Wanting To Move

[futurehope]

This is ridiculous. I spent about 9 hours sleeping last night, and I had to do my usual self-talk "C'mon you can get out of bed. C'mon, it's time to wash the face. C'mon walk the dog." etc etc.

It is a constant battle to move and do anything. I tried to do some of my weight-lifting and stomach exercises, and I just didn't have enough energy. These I do on the floor, BTW.

Go take my walk in the mall? Seemed like a joke to me even though it was a perfectly beautiful day. I did manage to do my laundry, but anything else? Forget it.

This fatigue/exhaustion is ridiculous. I got so desperate that I whipped out a 5 year old Midodrine pill, took 1/2, and noticed absolutely nothing. The pill is expired and probably lost its potency. I was seriously thinking of downing one of my old methylphenids (Ritalin), but decided on the Midodrine instead.

My day was wasted contemplating why I didn't feel like doing anything, and how much emotional strength and willpower it took to do anything. I was also contemplating that I have a hair appointment tomorrow, and I was wondering how I was going to manage that?

Do I have chronic fatigue on top of the POTS? I will be discussing this with my doctor, of course, but this feeling "dead", is such a waste. Good grief. I might as well be 84 years old. I certainly feel like an invalid.

Opinions please.

[Ernie]

Hi,

I feel like that everyday but a it's written in my file that I have CFS.

[MightyMouse]

When you have a clinical depression, you typically don't even think "c'mon, lets get up." You can experience a physiological depression as a result of being ill chronically, but that can be a bit different in the way it presents.

Chronic exhaustion is definitely part of my medical profile. It's physically so difficult to get out of bed that sometimes I cannot do it. There are times when 10+ hours of sleep is insufficient.

Do let your doctor know about your exhaustion--better daily symptom management can make it a little better getting out of bed, not easy by any means, but better.

[jump]

I'm so sorry you're feeling so badly!!!

I have crippling exhaustion as well, but in my case, it's just another fun symptom of POTS. I usually have about one day a week where I pretty much sleep all 24 hours, and then other days I sleep between 9 and 10 hours, sometimes with a nap in the afternoon. Like you, today I had to spend the whole day in bed, because I had a really busy weekend and I was completely wiped out. I was also sad to miss out on such a sunny day!!!

I discussed CFS with my doctor, and it does often go hand-in-hand with POTS. In my case, I don't have any of the symptoms of CFS except for the fatigue -- CFS is actually much more than "just" chronic fatigue. There's an on-line quiz you can take that might help you determine if you have some of the other symptoms or not: http://www.cfids.org/about-cfids/do-i-have-cfids.asp

I also found that I often have other problems going on that contribute to my fatigue. Periodically I have various vitamin deficiencies, for example, and this can make me REALLY tired. Sometimes my hypothyroid disease isn't well controlled. If fatigue is a big problem for you and you and your doctor decide you DON'T have CFS, I'd recommend getting routine blood work (vitamins, thyroid levels, complete blood count) at least twice a year to make sure you're not dealing with a treatable deficiency on top of POTS. I find that things can change fairly quickly for me -- for example, I had my vitamin levels checked in november, and they were all fine, and then when I got tested again in march, they were way off. So now I get tested more frequently and adjust vitamins and medication as necessary.

[Sophia3]

My CFS dx came first (it was called another name in 1985 and I worked around it) then got worse in 1990.

POTS is known to cause horrible fatigue (Like running in place all the time with high HR) so for some of us we get the double whammy..CFS, POTS..and FM, sleep disorders.

Like Nina said if you are doing good self talk, then it's not depression or you would be crying into pillow or zombie.

NOT that I have not had days like that. Sorry you are feeling so badly.

Your day today sounds like me everyday.

Hope you get answers for YOU and your situation.

[futurehope]

I definitely will discuss with my doctor getting bloodwork done for sure. All you responders are like this every day? This is unreal. It's almost like watching every one else "out there" living their lives, and I'm just trying to get up, wash my face and take a shower. I'm going through the motions of life but my brain is really too tired to think or to be engaged.

Actually, thinking is too tiring as well as activity.

We are quite a bunch, here. Unbelievable. Only you could understand what I'm saying. Well....I'm going to tell myself my usual pep talk.......Tomorrow is another day. I may be much better tomorrow than I was today. I never know from one minute to the next what I may be capable of.

Phew...subsisting...I'm just going through the motions. Well, I do the best I can and that's all I can do for now.

Thanks for listening. (And it was a beautiful day outside, too. You would have thought all that beautiful solar energy would have worn off on me? Oh well. Not to be. Tomorrow's another day.)

It's been a real long time since I could actually plan to do an activity ahead of time, and look forward to it, instead of becoming anxious that I might not be "up to it". Plans fill me with anxiety and dread since I have no idea how I'll feel when the time comes.

Yep, my old life has gone the way of the dodo bird. Guess I better head to bed. Thanks.

[mjan]

I am sorry for your struggle. BUT I am impressed with all you try to do each and every day.

I KNOW the self talk.. come on.. get out of bed..(thank goodnes I have to pee)..every day I say.. call in sick.. they'll understand. Nope..cannot.

I have "good days"" claim it with excitment then in an hour or so later.. I just want to lay down and sleep.

Ok Chronic Fatigue syndrome IS a real DX for many many related autoimmune disorders. I used to get SOOO bad that I could not even hold up my head.. so.. I took a leave of absence from work.. and found this amazing nutritionist who tested me. His results said I was near ORGAN FAILURE!!

He detoxed me.. build up my deficient systems and whalla many many things improved. I STILL struggle with symptoms but he helps alot..that my docs tell me to return to him.

He uses lazer light to help the nerve endings "re-communicate" so that the brain CAN send electrical energy to heal.

But now I cannot afford him as I just had my autonomic testing out of network and have to pay for that first. But..he saved my life at one time so I could return to working.

NUTRITION .. the BRAIN needs nutrients..and when depleted.. and toxic even from our meds.. our WHOLE body/brain and all suffer.

We ONLY have so much energy to go around.

Best to you

Jan

[Ernie]

Hi,

Yes, this is for me all the time.

[futurehope]

I am sorry for your struggle. BUT I am impressed with all you try to do each and every day.

I KNOW the self talk.. come on.. get out of bed..(thank goodnes I have to pee)..every day I say.. call in sick.. they'll understand. Nope..cannot.

I have "good days"" claim it with excitment then in an hour or so later.. I just want to lay down and sleep.

Ok Chronic Fatigue syndrome IS a real DX for many many related autoimmune disorders. I used to get SOOO bad that I could not even hold up my head.. so.. I took a leave of absence from work.. and found this amazing nutritionist who tested me. His results said I was near ORGAN FAILURE!!

He detoxed me.. build up my deficient systems and whalla many many things improved. I STILL struggle with symptoms but he helps alot..that my docs tell me to return to him.

He uses lazer light to help the nerve endings "re-communicate" so that the brain CAN send electrical energy to heal.

But now I cannot afford him as I just had my autonomic testing out of network and have to pay for that first. But..he saved my life at one time so I could return to working.

NUTRITION .. the BRAIN needs nutrients..and when depleted.. and toxic even from our meds.. our WHOLE body/brain and all suffer.

We ONLY have so much energy to go around.

Best to you

Jan

Oh please PM me the name/phone # of this nutritionist. I'm so ready to think outside the box. Thanks a million. Ernie, you're a trooper and an inspiration. Thanks for your response. I can relate.

[Ernie]

Hi,

Thanks for your encouragement futurehope.

As Jan mentioned nutrition can help. I am just starting a new treatment to detox my body on Sunday. It is suppose to help with a lot of thngs. I am willing to give it a try because some of my family members have had success with it.

[Broken_Shell]

Hi,

I am sorry that you are struggling so much. I would suggest that if this fatigue is a change for you, then it would be a good idea to have a geeral work-up down by your MD just to check your blood counts, thyroid, etc.

That being said, I also suffer from fatigue. Sometimes it is quite severe and I can barely keep myself sitting up, let alone do anything productive. This is all part of dysauotnomia and the fact that our bodies are constantly under so much stress just to keep our systems close to "functioning"... you know what I mean.

Anyways, while fatigue is a symptom of depression, it would likely accompany other symptoms. Specifically, if you are interested in doing things - getting out of bed, washing up, getting dressed, leaving the house, etc. but you just don't feel well enough to do them, then I would say what you experiencing is less likely to be depression. Personally, I have tons of motivation and mental energy to do things, I just don't physically feel well enough to do them.

One more thought, there are some medications that can be used to treat fatigue in patients with CFS, multiple sclerosis, etc. It might be worth taking to your doctor about. There's one called Provigil, and then the SSRI "anti-depressants" can sometimes help with this too.

You'll be in my thoughts! Hang in there! Let us know if anything changes... for better or worse.

~ Broken_Shell

[MightyMouse]

Yes, everyday I feel exhausted...and I push myself so hard all week long that by friday evening I'm a mess. I usually am happy if I can get out of bed for a few hours on Sat and Sun, but I need the extra sleep or I'll never get through the week that starts on Monday. I'm constantly feeling guilty b/c I can't keep up with the household things like cleaning, cooking, laundry, yard work, and the endless to-do list like painting and small fixes. I also sometimes need to sleep after work in order to have the energy to eat dinner. If I didn't have Teri, who understand but sometimes still gets a bit frustrated, I don't know what I'd do. Well, really, I do know: I wouldn't be working anymore...

[Stace915]

I think most of us POTSY's have debilitating fatigue at least some days if not all. Today is one of those days for me, I guess that I am lucky enough that there are many days I get to the office and I freelance so I have the flexibility of working from home and a wonderful boss who is as understanding as she can be but today it took me 4 hours to get out of bed and pee and walk the dog. I was just laying here and thinking about it but I was just too tired I couldn't move (and that is with all my morning meds including adderall which usually gives me enough energy to get out of bed) but I was just too exhausted. I finally got up, I went to the bathroom and walked the dog and grabbed my laptop and now I am back in bed and was trying to push myself another 1/2 hour before I let myself go back to sleep.

The days when I do go to the office that is really all I can do, by the time I get home I am so exhausted I have no energy for the laundry, or making dinner, I usually can't even make it through watching a movie on the couch (and fatigue is great for your sex life too!)... on the weekends I usually sleep a good part of each day and attempt to get out of bed earlier enough in the afternoon that I can still try and run some errands or do some things around the house, last weekend I was so excited that I got up early and went to run errands and was feeling decent so I called some friends that I haven't seen in a while and made plans for that night. Well by the time I got home from errands I was done, I was asleep for the night by 7pm and slept over 15 hours to compensate for the few hours of errands. I guess its give and take and it ***** but I think most if not all of us battled with this.

[futurehope]

Yes, everyday I feel exhausted...and I push myself so hard all week long that by friday evening I'm a mess. I usually am happy if I can get out of bed for a few hours on Sat and Sun, but I need the extra sleep or I'll never get through the week that starts on Monday. I'm constantly feeling guilty b/c I can't keep up with the household things like cleaning, cooking, laundry, yard work, and the endless to-do list like painting and small fixes. I also sometimes need to sleep after work in order to have the energy to eat dinner. If I didn't have Teri, who understand but sometimes still gets a bit frustrated, I don't know what I'd do. Well, really, I do know: I wouldn't be working anymore...

I do feel sorry for my spouse. He comes home from work, and by then I'm definitely reclining on the sofa. If he didn't make dinner, I'd probably resort to canned or prepared foods (yech). I'm sure it is very difficult on him to come home after working a full day and commuting 35 miles to see a "slouch". I do my best after waiting a while after dinner to get up (I wait so I won't stand and get dizzy from having my blood pooling in the abdomen for digesting) and do the "final" clean-up in the kitchen involving the dishwasher, trash, counter cleaning, only to collapse back down. Half the time I'm ready for bed by 7:30 PM or fall asleep on the sofa if I don't get upstairs.

Don't even try to hold a conversation with me when I first get up in the morning! I'm too tired to respond or to think of an answer. Walking takes all the energy I have at that moment.

Interestingly, I thought chronic fatigue people improve over time. Well, I'm definitely not in that category.

Do any of you feel worse, better, or the same as you did 5 years ago? Or is it too hard to tell?

[futurehope]

I think most of us POTSY's have debilitating fatigue at least some days if not all. Today is one of those days for me, I guess that I am lucky enough that there are many days I get to the office and I freelance so I have the flexibility of working from home and a wonderful boss who is as understanding as she can be but today it took me 4 hours to get out of bed and pee and walk the dog. I was just laying here and thinking about it but I was just too tired I couldn't move (and that is with all my morning meds including adderall which usually gives me enough energy to get out of bed) but I was just too exhausted. I finally got up, I went to the bathroom and walked the dog and grabbed my laptop and now I am back in bed and was trying to push myself another 1/2 hour before I let myself go back to sleep.

The days when I do go to the office that is really all I can do, by the time I get home I am so exhausted I have no energy for the laundry, or making dinner, I usually can't even make it through watching a movie on the couch (and fatigue is great for your sex life too!)... on the weekends I usually sleep a good part of each day and attempt to get out of bed earlier enough in the afternoon that I can still try and run some errands or do some things around the house, last weekend I was so excited that I got up early and went to run errands and was feeling decent so I called some friends that I haven't seen in a while and made plans for that night. Well by the time I got home from errands I was done, I was asleep for the night by 7pm and slept over 15 hours to compensate for the few hours of errands. I guess its give and take and it ***** but I think most if not all of us battled with this.

I can so relate. You wonder how a body survives being as everything is so difficult? Obviously, something is not working right?! It's like being 87 years old in a younger looking body.

Do you tend to look "gray" or "pale" when you're really tired? Just wondering.

[lotsicker]

I find that I feel just like you on my worst days. I had read that POTS can mimic CFS and its often misdiagnosed as such. I have read that you can have both. I think our bodies enter into an almost crisis state which force us to do nothing but lay down. For most of us this not an option! It does feel like depression and I get SOO irritable! I find that if I can rest as much as possible, I do feel better in a couple of days.

I am hoping you feel better and I am sorry its such a rough day!

[Stace915]

I don't notice the change in my color but I have been told I get a greenish tiny to my face when I am really wiped out. Back to bed! Good night all.

[Kitsakatsa]

I don't notice the change in my color but I have been told I get a greenish tiny to my face when I am really wiped out. Back to bed! Good night all.

Yes. I have been called Green many, many times. More green before I was diagnosed and put on meds. Its funny, I couldn't see it, but people completely independent of each other would bring it up. I had never heard anyone on this board say the same thing. I wonder what it is that causes the green mask?

My labs are cooking right now for Myesthenia Gravis. A positive result would explain so much. It would really explain everything. Does anyone have this and POTS? They seem to be very closely related. I wonder if we all have a MG and Shy-Drager variant that hasn't been named yet. I describe it as everything in life feels like a treadmill at an extreme incline. My doc describes it as walking in sand. I think of it as living in sand! Does anyone know if MG is corellated with POTS by any chance?

Kitsa

[morgan617]

Sometimes I am so exhausted I wonder if my chest is going to move when I try to breathe! Any chronic illness causes fatigue and depression is very common also. I have always assumed I have a touch of both, or a lot of one and a little of the other, depending on what else is going on.

I haven't been able to exercise in literally years. if I can manage one load of laundry and feeding my dogs, I call that a good day. My doc said I have an 84 year old body, so it's funny, not haha, that you would say that. Sometimes I think the fatigue is the most debilitating part of any of my illnesses. So don't feel like the lone rangeress sweetie, we are all there with ya! morgan

[ajw4790]

Hi,

Yes, most of my days I experience very significant fatigue to the point of just doing normal daily survival activities (eat, sleep, sit, stand, go to bathroom, etc.) takes all I have. On these days I also try to get in at least one "project", but it can sometimes take me 4 days to actually complete that project. This can be anything from putting away laundry/load dishwasher to running errands like pick up prescriptions or groceries. I very rarely do anything that I don't HAVE to do (i.e. go somewhere for the heck of it, "fun" shopping, go places with friends, etc).

I think fatigue of different levels is very commonly seen amongst us. It is frustrating etc., but for someone who has been this way pretty much as long as I can remember, I do not really know any different. This is and will likely always be a fact of life for me. I hope to just be able to at some point be able to do what is needed to survive and MAYBE get some kind of flexible part-time job that I can handle. But who knows what the future will bring?

I feel slightly worse fatigue wise than 5 yrs ago, but overall that has been one of my most constant symptoms. As far as color changes... when tired, not sure, I don't think so... maybe a little less color. But, I do get white when I am feeling symptomatic/near fainting.

[futurehope]

I don't notice the change in my color but I have been told I get a greenish tiny to my face when I am really wiped out. Back to bed! Good night all.

Yes. I have been called Green many, many times. More green before I was diagnosed and put on meds. Its funny, I couldn't see it, but people completely independent of each other would bring it up. I had never heard anyone on this board say the same thing. I wonder what it is that causes the green mask?

My labs are cooking right now for Myesthenia Gravis. A positive result would explain so much. It would really explain everything. Does anyone have this and POTS? They seem to be very closely related. I wonder if we all have a MG and Shy-Drager variant that hasn't been named yet. I describe it as everything in life feels like a treadmill at an extreme incline. My doc describes it as walking in sand. I think of it as living in sand! Does anyone know if MG is corellated with POTS by any chance?

Kitsa

I have consistantly tested positive for Achr antibodies. Now, the interesting part to me is when they did an EMG test, ran a CAT scan on my thymus, and did the usual neuro testing, I came out "normal". I'm starting to think that "normal" in my case is extreme fatigue. If I have a variant of MG with extreme fatigue, I cannot say that I have "flares" as such, since my fatigue is always there with some good days interspersed.

Morgan, I can so relate. My exhaustion can feel like the actual "chore" of breathing is too much.

I did try Mestinon once using the liquid form and a dropper in order to titrate up to a normal dose. Even the very little medicine dropper amount gave me a headache and I couldn't wait for it to wear off. Needless to say, I didn't want to try that again.

I'm convinced that something isn't right and the doctors do not know enough yet how to correct the problem.

[mattsmum]

In response to the OP I would say Chronic fatigue causes depression. And my dr explained he thinks my chronic fatigue has come from untreated POTS for so long. Body just can't handle it and tries to compensate for what is going on.

Not being able to do what you want to do or better still when running a family etc what NEEDS to be done on a daily basis is definately depressing. Being restricted to what you can do or having to decide well I could take my son out today but I also need to do the grocery shopping and not having the energy to do both like normal people is very depressing. Positive talk gets you through each day but to say that this underlying helplessness doesn't get to you would be in denial. Are you depressed? Well no because you are still getting up and doing things even by force. The day you give up is the day the depression has won.

I always refer to myself as a rechargeable battery. I only have so much juice before I need to 'recharge'. Medication bought me a little more juice but still by no means measures up to what a normal person can do. I have accepted it is the way it is but by no means do I like it.

[janiedelite]

I'm relying to this post a little late, but as I read through all the other replies I realized I can relate. I took the CFS quiz someone posted and easily could have CFS. My first POTS day occurred in 10/06 while I was working as a nurse. I remember feeling so acutely exhausted and could hardly think. I even told the charge nurse that if I didn't start feeling better, I'd need to go home (and I never went home early!). Then a few hours later, I was doing my routine nursing duties and the room went gray and I got all clammy. I grabbed a chair and put myself on a heart monitor and the rate was 160! That began the unending series of tests...

I've had constant mild fatigue since then, but last summer when my small fiber neuropathy pain really kicked in, I would have these wierd distinct episodes of overwhelming fatigue. I noticed that I'd have a mild fever during these times sometimes too. First the episodes lasted a few hours, and I'd be fine for a week. Then it lasted a day, and I'd be fine a few days. Then it lasted a few days with less time in between feeling better. Now, a year later, I have this fatigue every day with a few hours every month or two of increased energy.

I described these episodes to my local neurologist and he didn't know what to make of it. My PCP says it's just related to my autonomic dysfunction. I think I probably have an autoimmune component to my POTS, which has probably caused my small fiber neuropathy, even though my ANA and ACHR are negative so far. But I did go on a 12-day course of prednisone last summer and didn't notice any difference in my symptoms.

I do meet all the criteria for fibromyalgia also, but I've had such a hard time getting a doctor to diagnose my POTS/neuropathy that I haven't mentioned this to my docs. Same with CFS. It just seems that the specialists I saw were sometimes so sceptical of my symptoms already, and then if I had those diagnoses on my chart I know that some of them would just further discount the validity of my illness. I'm a nurse, and I know that CFS and fibromyalgia are REAL and debilitating, but I've also met docs who say they don't believe any diagnosis that ends with "Syndrome." I don't see these docs anymore, of course. Dr. Fealey at Mayo told me it sounded like I had fibro and CFS, but he understood why I avoided having those labels place on me until we discovered the root of my illness (in my case, small fiber neuropathy, probably post-viral).

I started seeing a therapist last summer, mostly to help coping with the onslaught of symptoms and the toll they were taking on my life. We came to the conclusion that I didn't need antidepressants or meds, but emotional support through this illness. Since I returned from Mayo with a diagnosis and a plan, I saw her one last time and she commended me on my positive attitude throughout this ordeal, even though I shed many tears in and out of her office over this disease.