chronic fatigue demands life changes - help!

[chm02]

WAAAH!!!

Ok- had to get the waaah out- now:

Hi yous Guys!!
How are ya? I haven't posted in a long time, but you might remember me from last year when the group was in San Francisco.
I've got a huge looming problem I need help with here in the form of your feedback, advice and support.
Got infected in '06, started meds in '07, and now in '08 I find i can no longer live the life I lead, because I tucker out so easily. I'll be going along and then BAM it hits me and I feel like a car that ran out of gas.  I won't belabor all the symptoms - I'm hoping you guys have some idea what I'm talking about. Suffice it to say I've scoped out all of the broom closets at work for my impromptu naps. It feels like narcolepsy. My labs don't indicate anaemia or glycolosis problems. In fact, they're great. The Atripla has worked really well.
Also, the cognitive razor that once was my brain is becoming more butterknife-ish. I have trouble remembering things, and do idiot things like getting on the wrong bus and ending up in bumfuck before i know what's going on.
In response to this, i have reduced my social life to practically nil, stay home a lot, try to get 8 or 9 hours of sleep a night, eat right, get a modicum of exercises, blah blah blah. That's all good, but now i find i cannot perform at work as i need to. I'm often late because i can't get out of bed in the morning- and this isn't the lazy-up-too-late-oh-my-god-i-cant-get-up sorta feeling, this is like the You-Aint-Going-Anywhere-Boy feeling - like someone just slipped me a mickey.
What I know is that my illness is demanding lifestyle changes- big ones. What I don't know- and am fearful of- is where i go from here. I've got to be proactive on this while i still can be.
Thanks for hearing me out. I think mostly, i need to hear that I'm not the only one, and that it ain't all over for me just yet. ANY advise, thoughts, replies, rants, or recipes very welcome.
-Mark

[Iggy]

Mark,

I'm assuming you spoke with your doctor about all of this?  What is his/her take at this time?

Mark

[BT65]

Mark, and I don't mean anything negative by this, but do you have depression problems?  What does your doctor have to say?

[chm02]

Mark,

I will see him next week. I think my posting is probably in prep for that, too.
So astute, we Marks.  

Mark

[chm02]

Betty,

Yes, I have had clinical depression for god knows how long. Effexor and Wellbutrin.
(So astute, we Bettys)
-Mark

ADD: Depression is a real factor. That's in the mix too, along with being a survivor of child abuse, substance abuse, etc.
I've had major problems and overcome to the best of my ability. I'm worried now that my best just ain't good enough.
 

[newt]

Well you can do all the psych/neurology work-ups to eliminate everything

Which may well leave the efavirenz in Atripla.

While it's hammering the virus, and this is not to be trifled with when it's working well, efavirenz does affect the brain. The typical/well-known presentation is dreams, mood disturbances etc, but your presentation is consistent with it possibly being caused by the efavirenz.

In short efavirenz can make you depressed, anxious, clumsy and forgetful. And affect your sleep, so it's not so deep and resting, which mean mucho naps. 

I lived with my man exisiting in this state for 2 yrs.

I am not saying it is the efavirenz, just it may be.

- matt

Edited for spelling

[Miss Philicia]

During a period of my very worst fatigue (falling asleep on the subway after work, missing my stop... that sort of thing), which I assumed was med/HIV related, I was sent for a sleep study at a hospital overnight.   Found out I had sleep apnea.  Not saying you have this of course, but you could always opt to at least ask your doctor about this testing option to rule it out, assuming you have insurance to pay for it because they aren't cheap.

Of course, some of my fatigue was HIV related, because I had a high viral load for years, but my point is that not everything is always HIV related, or not completely.  Often there's an underlying problem that HIV only exasperates.

[planonstaying]

I am not on meds and i get  periods of  fatigue which are occasionally bone numbing. If it helps you aren't alone...you aren't alone. I've been told it is probably just the virus....just

[newt]

It is unlikey to be the virus if replication is supressed by meds

- matt

[Winiroo]

Welbutrin knocks my butt out.

But yeah your not the only one. There are moments for both me and my boyfriend. I've been positive 15 years not quite 16. and he is going on 19 years.

Driving and being confused for a moment wondering where I am and how I got there and that none of this looks familure only to snap out of it after a couple of minutes and think to myself geez WTF was that?
Quite some time ago I had more issues than I do now with daily life and just getting easily confused with daily tasks.

For the most part I'm ok now. But I have my moments...



Wendy

[lucas clay]

have you had your testosterone level checked?
10 hour days at work get me tired, at the end of the week. i am toast!

                                             ( its Friday, I'm tired)
                                                                         Lucas

[randym431]

Glad to see this topic.
I go thru issue phases. The dead tired phase… then the dreams phase… then the brain fog phase…
Then back to the beginning, over and over.

I'm on sustiva (efavirenz) so this makes sense.
Getting several short naps in sure helps, but for those of us working daily,
it catches up to you fast.
I think your right, it most probably will demand a life change at some point.
Going part time, or SS disability.
The virus itself is pretty much taken care of via meds, but the meds can
take a real toll on the old bod.
That is, if you have to both take meds, and still try to carry on a "normal"
life. Not easy to do.

When work gets the best of me, and I'm just a walking tired zombie, I take a few days
off or even a week. It helps beyond words. But the pattern starts over after back
on the daily job thing after awhile, trying to keep up that normal existence.

Problem is, vacation time is limited. I find I am using it up fast, and its still a long time to go until I'm reloaded.

The way things are stacked via employment and how the government sees this, we are on our own. And just expected to try to survive till we drop senseless.

It would be nice if they met us half way.
But as things are going, more and more, if your pretty much healthy with hiv and undetectable, you are not considered to have a valid complaint.

[next2u]

ive brought this up many times to my friends and doc. i am more tired. i used to wake up thrilled there was another day. now i wake up and feel what i suppose is  normal. my energy levels have been decimated. i am tired all the time and sleep plenty. i eat healthy and exercise (albeit, less than i use to). i assume this is hiv related, but poz friends are telling me it could be linked to depression,eating habits, or other variables. the biggest change in my life has been the hiv. through the ups & downs i find that my energy levels have plummeted regardless of my emotional or mental state.

so yes, the bugger has affected me, sans meds. i only hope that meds will alleviate some of these new found maladies ( and present only a fair amount of side effects).

[hjeffs]

Understand completely. I am an active person, full time job and father of two in a long term relationship.....that sentence alone makes me tired. I too get tired and forget about the meds as well as the side effects of the + disease. I have to remind myself to keep it slow and take care of myself. I also try to do what I need to with being tired or the fatigue. My outlook is all based on how I feel and if that is tired or fatigued it isn't pretty for me or anyone else around me. I keep aware of my condition and try to provide self care when I need it most!

Be kind to yourself, check with your doctor and put your mind and body at ease. I understand........sometimes that helps me a lot when I know there is someone else out there that knows what I am feeling too. Good thoughts your way.

Jeff

[Miss Philicia]

have you had your testosterone level checked?

Oh yeah, totally second that.  In fact I'd think it would be the first thing that they check, just to rule it out.  Low testosterone, depression and fatigue can be a vicious circle, but I think in that scenario it all goes back to the low testosterone (hopefully).  Of course, the low testosterone, assuming you're not really old, is a result of HIV infection.

Newt, when you read this can you comment on if low testosterone levels are only seen in patients with high viral load?  Or can it occur at any time?

[Winiroo]

B/F has low testosterone and has been undetectable for quite some time. But he has been positive for nearly 19 years...

[dgr20002]

Mark,

I know exactly where you are coming from. I found out I was poz in 87 and I remember even back then being way too tired. I would come home from work sit down in front of the TV and be out like a light. I was 25 at the time. If I got stuck in traffic I would fall asleep in my car at 3:30 in the afternoon. Once when I did this I rearended the car in front of me and that is what woke me up.

To this day I am exhausted too. I have done the androgel(test esterone replacement) because I was told I was on the low side of normal. The only thing it did for me was put some hair on my chest. And because of it my body may not be producing the testerone on its own like it should. I took androgel for several years and finally decided it just wasn't really doing much.

I take lexapro, and have for several years. That started after my partner at the time committed suicide and all i did was cry and to this day I take it because I don't want to go back to that place. So you see I am on an antidepressant and I don't think I am depressed. I have done androgel and that wasn't any use. Having said all that I really think it is just the virus itself and the body has to fight it and it just wears us out. I take Reyataz and Epzicom.  VL is undetectable and T cells as of 10 days ago are 850. I have asked my doc about disability because I am so tired at work I fall asleep and am afraid I will get caught and then fired. that means no insurance no income and on and on. the doc says my numbers are too good and I won't qualify for disability. Since he would have to fill out a lot of forms for me to even apply I have to take his word for it. I work a 40 hour week and most days I want to just put my head on my desk and go right to sleep.

The hard part for me is that I know I need the rest. I sleep 7-8 hours a night wake up most days feeling good about 6am or so. By 9am I need a nap. It's like that for the rest of the day. Some days are better than others depending on what is going on at work but I am exhausted by the time I get home. My eyes are tired and they droop. People always say how tired I look, It gets old.

I figure one day the fatigue will stop me from working one way or the other. I am more worried the SS administration won't see it that way and will deny me any benefits. It's a terrible spot to be in.

Best of luck to you and let us know what your doctor says/recommends.

David

edited to add : I have fallen asleep in the dentists chair more than once while he was working on my teeth too. He comented on my snoring!

[newt]

On the testosterone thing, reduced levels of testosterone is a problem for a significant proportion of people with HIV regardless of treatment, and when low before treatment do no always normalise after treatment is started.

Hope that helps

- matt (I need to get out more) the newt

[Oceanbeach]

Dear Mark,

My cousin Lyn, worked for several years in a office.  She was divorced and raising her son alone.  She was good at her job and happy with the work.  The company built a new building which was located in the middle of a field with lots of pollen producing flowers/weeds.  It was a high rise office building and the contractor made an error.  The exhaust fans were accidently installed reverse and the building was full of pollen.

This went unnoticed for quite some time, my cousin Lyn and two of her co-workers started falling asleep at any given time or place.  The three women were put on State disability for the first year and had some existing medical care from the former employer.  Social Security was denied to my cousin because Chronic Fatigue Syndrome was not recognized as a disabling illness and therefore she was treated as being lazy.

She remarried, they raised her son who has graduated from college, gotten a great job and is living far away.  After nearly 30 years of living with Chronic Fatigue Syndrome, she will go for years without driving because she can fall asleep behind the wheel.  She can fall asleep in the middle of a conversation so, she rarely leaves her house alone.  I believe Chronic Fatigue Syndrome is now considered a disabling illness and there is treatment available.

I don't know any of the specific web sites on this illness but you may want to search if your symptoms are similar to my cousins and discuss it with your Doctor.  Have the best day
Michael

[Poz Brit]

Years ago before HIV infection I lived my life 24 hours just needing an hours sleep at a time to a total of 4hours in the 24 hour period. Now if I am lucky I get two four hour periods of being awake in 24, and through out this I am yawning and feeling washed out. I have so many tests done but the reason why has still not immerged. Yes it has been a big change in life from a very fit busy full of life person to a slow tired old man, I’m 58 years now and Know life slows at about this age, but this is ridiculous, forever the optimist, I live in hope for a change. So you are not alone, there are others out here, I am not yet on meds, but have many HIV plus friends that are, and also in this state.

[mjmel]

You certainly aren't the only one, buddy. This fatigue is unique, that much I know. I just love it, when out of the blue, I get a good day. It's a day of energy and motivation to match. Yahoo! On those days, I am often surprised at what my energy strength used to be.
Then just as quick, life resumes what has now become normal: Le fatigue.

Mike

[John2038]

I'm more in the frog when it's hot.
I'm less tired (much less), since I restarted doing sport.
Some day, I'm doing sport feeling tired, and after an hour or two, I feel very well.
Also wondering how much psychologic (rather that physical) is the feeling of being tired.