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Author Topic: Why am I so tired?  (Read 10346 times)

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Offline Sdgirl

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Why am I so tired?
« on: June 05, 2006, 07:32:44 PM »
Okay, I am not on meds, and my numbers are okay...tcells 640 and VL 23,000...but MAN am I tired!  I mean I laid down for a nap at 6:00p last night and didn't wake up until 6:30a this morning!  Now what's that about?  And I don't wake up "refreshed" either.  Is fatigue a side effect of the HIV virus?  Is what I'm experiencing normal?  I asked my doctor about it, but she just kind of brushed it off.  Shit, I can run training camps on sleeping.....do I need vitamins, WTF?   :-\

Lisa
"Our deepest fear is not that we are inadequate.  Our deepest fear is that we are powerful beyond measure.  It is our light, not our darkness that most frightens us.  We ask ourselves.."Who am I to be brilliant, gorgeous, talented, fabulous?  Actually, who are you not to be?"

Offline jkinatl2

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Re: Why am I so tired?
« Reply #1 on: June 05, 2006, 07:41:09 PM »
HIV is a HUGE side effect of HIV, with or without drugs. Me, I've tried every trick in the book, from massive coffee to energy drinks to ephedrine. After a time, none of it seems to work very well. There is, it would appear, no more "jumpstarting" the system.

Oddly, drinking lots of water, and moving around al I can seems to help a little. But every time I go to the doc about it (and you ought to, because anemia is a common HIV side effect) I have gotten the dismissive "its just part of the disease process" line. Methinks doctors get pissed when they can't directly diagnose or fix a problem.

But it's real, and it's not necessarily depression or anything other than the fact that you are, on a cellular level, fighting a non stop, vicious battle. You are using almost double the calories of your HIV negative friends, and your body is under constant assault. One of the effects of that waged war is going to be fatigue.  I try to make the most of my up-time, though sadly, things like housekeeping and errand running have taken a serious backseat.

But don't stop pestering your doctor. Seriously.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline kcmetroman

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Re: Why am I so tired?
« Reply #2 on: June 05, 2006, 10:10:17 PM »
Over the past few months I have encountered the same thing, typically around the same time of day (late afternoon).  My ID doc is running tests on testosterone levels.  I guess it is common in HIV+ guys.  My situation is a bit different though, Lisa.  I am on meds and a considerably lower CD4 count.

I do think that even the element of HIV can cause a mental fatigue.  I have caught myself wondering if I am doing too much sometimes.

I find fresh air to be the best spell for it.

 :)
John

Offline allopathicholistic

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Re: Why am I so tired?
« Reply #3 on: June 05, 2006, 11:44:39 PM »
Oddly, drinking lots of water, and moving around al I can seems to help a little. But every time I go to the doc about it (and you ought to, because anemia is a common HIV side effect) I have gotten the dismissive "its just part of the disease process" line. Methinks doctors get pissed when they can't directly diagnose or fix a problem.

Water and activity helps me too. before I would nearly always need to nap around 1PM .....when I was a denialist my low energy was almost guaranteed, especially on the weekends after working 5 days a week, 8 hours a day.  .....  Now I feel fatigue issues have improved since starting meds ...and boy I'm glad because I was told meds can make you tired. I was like --oh no please!!! And at first they did make me tired but I think my body has since adjusted. I do know one thing - and please, no eyeball rolls -  high-fat big-portion meals which aren't nutritious make me very very tired. I like to eat sprouts and salads because they seem to help

Offline sfpvguy41

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Re: Why am I so tired?
« Reply #4 on: June 06, 2006, 12:40:01 AM »
I had the same problem, was needing a nap every day around 5pm, and sometimes slept for 12 hours too.  Got worse the longer I had it.  Since I've started meds, I don't think I've taken a nap once!  Even though I never got below 360 cd4s.

I found that multivitamins helped tremendously.  I especially love Super Nutrition http://www.supernutritionusa.com/ vitamins, they have mens' and womens' blends.  A couple HIV+ friends I've recommended them to swear by them.  You can take 3-6/day, and they are food based so they are more easily absorbed into your bloodstream.  Also, they contain everything under the sun you'd ever want to take - I did some research on HIV and nutrition, and vitamins, and compared what's in them to the recs - and they cover just about everything, like selenium, magnesium, and various herbs too.

2 recs:  you have to take them every day, don't stop if you feel better!  Also, best to take them with food.

Good luck.
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline Sky

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Re: Why am I so tired?
« Reply #5 on: June 06, 2006, 01:26:08 AM »
I haven't been on meds since I tested poz, but I can totally feel ya on being tired.  It's really wierd, I'll go months at a time feeling great, then periods, like now, where I'm sluggish.  I sleep 8 hours and can't drag my butt out of bed for another 3 hours or so.  I've wondered if it was my depression kicking in or what, but I feel fine and happy...so what gives?
Poz since 2003.

Offline Poz Brit

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Re: Why am I so tired?
« Reply #6 on: June 06, 2006, 03:47:40 AM »
I completely relate to this post, I use to be able to leap out of bed and be showered, dressed and had breakfast in thirty minutes, now it takes twenty to get my legs out, In the  afternoons I can crash any where, and go so deeply to sleep. I tried to have a social evening with friends yesterday, but found it difficult to keep alert through my constant yawning and struggle to stay awake. My Doctor has now signed me off, labelling it as Chronic Fatigue, Yet, I am living as is recommended, as in diet, nutrition and exercise,  and have taken so much advice from those that say they Know, but to no avail. Before HIV I lived my life, only needing four hours sleep a day, now I seem to need fourteen hours and a nap half way through my awaken hours.

John(UK)

Offline JohnOso

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Re: Why am I so tired?
« Reply #7 on: June 06, 2006, 04:14:59 AM »
Hey Lisa,

I'm assuming your doctor checked your blood count recently and decided you weren't anemic since she brushed it off.   Drinking enough water?  Drinking too much alcohol?  Not eating right? 

Just throwing stuff off the top of my head that I can think of, especially since you're not on meds.  The anemia thing jumps right out at me, especially for younger women.

Take care sweetheart,
John

Offline water duck

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Re: Why am I so tired?
« Reply #8 on: June 06, 2006, 04:38:34 AM »
Hey Lisa,

If i remember well, it's not so long that u discovered u r poz.
All traumatic experiences that we face , create 'big waves' for some it 'comes' down 6 months later, for some 1 yr.......................................
I called it the 'de-stressed' period, the doc that follows me at the hospital , did not brush it off. She putted me on multi-vit - with magnesium, vit B. I pick-up after a month on these vits.
Hope this ease alittle your worries.

Siang

Offline Optimistic

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Re: Why am I so tired?
« Reply #9 on: June 06, 2006, 04:39:21 AM »
I feel the same thing you are feeling...I am tired all the time and I am not on meds.  I have no idea why that is the case....I've tried asking my doctor, but she did not give me any reasons aside from HIV is intrusive to the body and it causes tiredness more easily in a person who is HIV +....thus she said to get plenty of rest.  Even with the rest I am tired.  It is funny though, when I am on the treadmill for 30 mins, I feel energized afterwards; I have no idea what that is the case.  Maybe exercising could help to reenergize.  I have also noticed that a well balance diet gives me a little more energy, but I have to be consistent, such as having breakfast, lunch and dinner.   I use to go without breakfast and only had small lunches, but now I eat breakfast and a fairly larger meal for lunch.  Though sometimes eating too much will give me food coma, so I try not to overly eat.  Sometimes drinking green tea helps me too.  with the vitamins, it also reenergizes me as well.  Even with all these...I still feel tired sometimes. My doc kinda brushed it off too with a brief explanation.  I think she doesn't know of any advice so she just kinda kept quiet about it. 

Justin
12/06 (Atripla): cd4 - 260; cd% - 33%; vl - 169
1/07 (Atripla): cd4 - 267; cd% - 38.1%; vl - 132
4/07 (Atripla): cd4 - 373; cd% - 33.9%; vl - <50
7/07 (Atripla); cd4 - 287; cd% - 35.8%; vl - <50
9/07 (Atripla); cd4 - 356; cd% - 39.5%; vl - <50
12/07 (Atripla); cd4 - 517

Offline jack

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  • fomerly the loser known as Jake
Re: Why am I so tired?
« Reply #10 on: June 06, 2006, 05:09:42 AM »
I cant really help cause I have been on drugs since I found out in 89 that I was positive. I do know that in my first 5 years I slept all the time. It was nuts. I was a drinker back then.
I do know that depression can make sleep seem like the only solution. I like and recommend lexapro. I started taking ADs only when I knew I was depressed(about 5 years ago), and I for one believe you know when you are depressed.
Like many here have stated exercise does wonders, but I also know nothing could stop my daily 3 hour naps in the first 5 years I knew I was pos. I thought it was the azt.
I dont think there is anything wrong with taking a 30 to 60 min nap each day,in fact it is probably healthy. I usually take mine at lunch time. Yesterday, I went down for over two hours. Must be the drugs.

Offline Londonguy

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Re: Why am I so tired?
« Reply #11 on: June 06, 2006, 07:48:30 AM »
Hmmm I don't think I'm in quite the same position as some of you guys.  I rarely have to nap in the middle of the day and can get out of bed fairly easily, but since my CD4 count plummeted from 420 to around 200 I have felt fatigued on occasion.  Not in a 'I need to sleep right now!' way but a general feeling of weakness in my limbs.

It's never debilitating and it never stops me doing anything, but it makes it a bit more of an effort to get off my ass sometimes!  I also find that getting up and going for a 30 minute walk and some fresh air often boosts me for a few hours after.  The days where I mostly stay in the house are those where I feel the most exhausted.

Offline David_CA

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Re: Why am I so tired?
« Reply #12 on: June 06, 2006, 09:58:51 AM »
.  It is funny though, when I am on the treadmill for 30 mins, I feel energized afterwards; I have no idea what that is the case.  Maybe exercising could help to reenergize. 
Justin

Optimistic (Justin),

You sound like you get a 'runner's high'.  I feel the same way each day when I get finished with my stair stepper.  If I exercise for 15 minutes, I'm tired.  After I reach 17 minutes, I get that 'runner's high', 'second wind,' or whatever you want to call it.  Once I reach this point, I can keep exercising for over 45 minutes and not be really tired at all.  Strenuously exercising past the point of being really fatigued supposedly releases endorphines.  These are what make us feel so good.  This, and the obvious health benefits, are the reasons I advocate exercise.  Plus, it'll help keep one looking good!  Here's a link that kind of explains it:  http://www.lehigh.edu/dmd1/public/www-data/sarah.html


David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline MoltenStorm

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Re: Why am I so tired?
« Reply #13 on: June 06, 2006, 10:55:36 AM »
I've had that problem for a while now, but I'd never made the association between HIV and fatigue. I sometimes have slept for 21 hrs and still feel tired when I'd wake up. Funny, never once thought about HIV being the reason. Learned something new.
"Love is always patient and kind. It is never jealous. Love is never boastful nor conceited. It is never rude or selfish. It does not take offense and is not resentful. Love takes no pleasure in other people's sins, but delights in the truth. It is always ready to excuse, to trust, to hope, and to endure whatever comes." - 1 Corinthians 13:4-7, adaptation in A Walk To Remember

CD4: 555 / 29% / Undetectable - 7 Nov 2006
CD4: 555 / 29% / Undetectable - 5 Feb 2007

Offline sdcabincrew74

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Re: Why am I so tired?
« Reply #14 on: June 06, 2006, 02:04:32 PM »
yeap, when your body is fighting this virus it gets tired.  Us poz boys and girls need more sleep.  I can go weeks and feel great but every once in a while I have a day where I need to sleep A LOT.  And, it is not depression, I think ANN calls them viral days.  So, that is what I calll them too.
The difference between an overnight and a layover is luck!

Offline tom

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Re: Why am I so tired?
« Reply #15 on: June 17, 2006, 04:37:13 PM »
the tiredness thing is kicking my butt. I can hardly make a full day without taking a nap or laying down. If I can't get to a bed I just begin to zone out. This is really difficult to deal with at 19. My friends don't really understand why I sleep so much and am always tired, I'm not sure I do either. :(

Offline Ann

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Re: Why am I so tired?
« Reply #16 on: June 17, 2006, 07:51:00 PM »
I think ANN calls them viral days.  So, that is what I calll them too.

That's right, or VD days for short. :D

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Life

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Re: Why am I so tired?
« Reply #17 on: June 17, 2006, 08:01:41 PM »
I find sticking my fingers in the light socket gets things going..  Not recomended for kids.. ;D

Offline jkinatl2

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Re: Why am I so tired?
« Reply #18 on: June 17, 2006, 08:05:20 PM »
Last night I slept from 1:30 AM until 10 AM, woke up, had half a sandwich, watched some TV, and went back to bed from 2 until 7:30. Such is my life :)

HIV causes fatigue for many reasons, among them the obvious (anemia, ongoing viral warfare) and the not so obvious (subtle depression, HIV's activity in the brain throwing off hormones, et al). And the drugs used to fight HIV can cause fatigue for many of the same reasons. Not in everyone, not all the time, and not at exactly the same level. It's different in us all.

Another bonus, just for playing :)

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline allopathicholistic

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Re: Why am I so tired?
« Reply #19 on: June 17, 2006, 08:24:49 PM »
jk, I call that life in the slow lane... or the geritol lane

:D  :D

i dunno - the slow lane is "growing" on me. slowly of course

:D  :D

Offline jkinatl2

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Re: Why am I so tired?
« Reply #20 on: June 17, 2006, 08:28:11 PM »
It does sorta grow on a person... like athlete's feet, maybe :)

I used to be seriously hyper, tree-climbing, bouncing around, gym bunny. I really want that guy back.  My doctors think that because I look alright in clothes, and my weight's up, then it's not really an issue.

Anyone with energy producing tips? I mean, besides the stockpile of ephedrine I have in my kitchen (which does not work like it used to) and energy drinks (which cause a crash like you wouldn't believe)?

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline Life

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Re: Why am I so tired?
« Reply #21 on: June 17, 2006, 08:38:56 PM »
JK, drive your car really really fast? Base Jump? Rob a bank?

Offline jkinatl2

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Re: Why am I so tired?
« Reply #22 on: June 17, 2006, 08:44:59 PM »
:) Drive the car fast, skydive, empty my bank account :)

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Jena

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Re: Why am I so tired?
« Reply #23 on: June 17, 2006, 09:34:37 PM »
I have been getting B12 shots for a couple of months now and I have a lot more energy and don't need a nap as soon as I walk in the door every afternoon.. Ask your doc, they work!
Jena

Offline Bartro

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Re: Why am I so tired?
« Reply #24 on: June 17, 2006, 09:50:51 PM »
Since I started taking Truvada and Sustiva I've been getting very restful sleep and have more energy than I can remember.  6 or 7 hours a night refreshes me pretty well.  Occasionally I'll doze off after supper, but only for a half hour or so.  I take the meds about 10 and couldn't stay awake past 11 if I had to.  I'm up and at it by 6 am.  I did have a low platelet count which is on the mend.  Perhaps that's why I'm feeling better.  I also take a B12 complex with my multivitamin.  If I try to sleep longer than 8 hours it seems to make me more tired.  Check this out.

http://www.insomnia-connection.com/too-much-sleep.html
Rusty

Offline Oceanbeach

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Re: Why am I so tired?
« Reply #25 on: June 17, 2006, 10:14:52 PM »
Hi Lisa,

Over the years, I have known many people who were living in L.A. and wanting to move to San Diego.  Since Sonoma County is about to lose it's Title I status, I have been thinking about moving back to L.A..  but San Diego has kept me awake many nights recently because the closeness to the Mexico border, the Sea of Cortez and the close proximity to South Bay Beach cities (Long Beach, Hermosa Beach, Redondo Beach, and Manhattan Beach) and Costa Mesa, Palm Springs, Laguna Beach, Balboa Island.  Maybe you are so tired because you live in one of the most exciting cities in California and have been there long enough to not notice it. 

Could you imagine living in King City, Coalinga or any of those places where they habitually roll up the sidewalks at 10:00 PM every evening?  Since putting in so much effort in RWCA reauthorization for the past nine-ten months and being uncertain how the changes in the legislation will affect the care infrastructure, I am putting in a lot of consideration in thoughts of moving to San Francisco, Marin, Los Angeles (again) or San Diego.  Have the best day
Michael

www.Commission-on-AIDS.org

Offline USNRET

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Re: Why am I so tired?
« Reply #26 on: June 17, 2006, 11:23:47 PM »
Yeah I used to get tired alot, before the meds.  But I am not anymore.   So your in San Deigo, I drive down there every 4-5 months to the Naval Medical Center to get my labs done.  I love the weather there.

Offline randym431

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Re: Why am I so tired?
« Reply #27 on: June 18, 2006, 10:39:50 PM »
Yes its the hiv. For over a year before I even knew, I'd get so tired it was beyond tired. It was a clue something was wrong, but I didn’t get tested till a year later. That tiredness was one of the first signs, and not a good sign.
Now on meds for 9 months, I have most if not all the energy back. It scares me how the hiv damages the body. How totally and devastating the damage can be. The meds (in most) stops the hiv, thus stops the damage and the body really wants to recover. But as long as a vl is present, its out to win the hard way.

Offline Christine

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Re: Why am I so tired?
« Reply #28 on: June 19, 2006, 03:57:15 PM »
Hi Lisa,
I would call the Dr and make sure you are checked for anemia, check your hormone levels, b-12 level, and rule out depression. All of which can cause fatigue. If you are able to rule out those it could just be the good ole' hiv causing the fatigue.

I have been tired for so long, when I have a day where I have energy, I think something is the matter. I also can sleep for 10-12 hours, and not feel rested when I wake up.

Fatigue and nausea are the two worst part of all of this for me. It can be pretty rough at times. I have learned to budget my energy, make sure I sleep enough, and rest when I have to.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline jkinatl2

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Re: Why am I so tired?
« Reply #29 on: June 19, 2006, 04:18:47 PM »
I was super tired on meds as well. Being naturally anemic BEFORE HIV, I really have had no real recourse. Procrit did not work very well, and insurance ALWAYS hassled my doctor about it. AZT just made the anemia worse, and then discovering I had/have CML, maybe or maybe not caused by long term HAART use, just sorta put the icing on the fatigue cake.

But I still maintain hope. And drink a lot of Red Bull.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Christine

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Re: Why am I so tired?
« Reply #30 on: June 19, 2006, 06:45:51 PM »
Procrit takes my hemocrit levels up to almost normal..11.9, sometimes I even hit 12. Normal levels for women are 12-14. Every three months the insurance needs to make sure I really need the procrit, so it is usually calls back forth between insurance people, and the doctor's office. It works pretty well for me. I think my lowest count was 9.8, and it felt like my legs were lead, and I had a lot of trouble walking up stairs.

For me, fatigue seems to be part anemia, part side effects, and partly the hiv itself.
Christine
« Last Edit: June 19, 2006, 06:47:44 PM by Christine »
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline allopathicholistic

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Re: Why am I so tired?
« Reply #31 on: July 01, 2006, 05:48:48 AM »
bumpbitty bump

Offline allopathicholistic

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Re: Why am I so tired?
« Reply #32 on: February 19, 2007, 09:38:36 AM »
I have been getting B12 shots for a couple of months now and I have a lot more energy and don't need a nap as soon as I walk in the door every afternoon.. Ask your doc, they work!
Jena

Sounds very interesting!!

Anyone else here do this too? If so, how often?

Bump for more input everyone 

:-*

Online RapidRod

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Re: Why am I so tired?
« Reply #33 on: February 19, 2007, 09:50:51 AM »
I'm being put on Ritalin next month for fatigue. I'll let you know how it works when I get started.

Offline AlanBama

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Re: Why am I so tired?
« Reply #34 on: February 19, 2007, 11:50:49 AM »
Lisa, I feel for you honey.   As others have suggested, speak to your doctor about it (in a STRONG way).

What really gets on my nerves is people in my life who, for whatever reason, don't seem to understand that I get fatigued easily and may need more rest that the average Joe.   Some days, it is just about all I can do to drag my skinny butt out of bed, get dressed, and run out the door just in time to be at my part-time job at 9 am (thank God I only live 2 blocks away).   I get off at 3, and some days I go home and flop in my chair and rarely move until time to eat, then back to the chair until bedtime.

I think David is right, exercise helps with fatigue.   I am trying to build up some endurance right now, but I have been out of the gym for over 6 months (due to $$ reasons) and now that I'm trying to go back, the slightest thing just wears me out.

But some days I tell myself, "Self, you've had HIV for 20 years.   You've had AIDS for over 16 of those.   You deserve to rest."
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline englishgirl

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Re: Why am I so tired?
« Reply #35 on: February 19, 2007, 02:12:55 PM »
i suffer terribly from fatigue and have started taking co-enzyme q10, which a +ve friend recommended to me. it works for her, can't tell if it works for me yet. i really feel for you though as i have days where i physically cant get out of bed, and also i seem to spend all my time sleeping.

i personally think a huge amount of the fatigue is due to the (sometimes subconscious) stress or depression of being aware of your own mortality. i dont want to think that the fatigue is due to the fact that this disease is slowly killing me because that will do my head in, but really i can't deny that the immune system constantly fighting a battle against the virus must have something to do with it.

best wishes, i hope you find a solution - if you do let us know!  ;)
ACT NOW TO CAMPAIGN AGAINST THE TRAVEL BAN:
http://campaigning.tht.org.uk/cms/cmsloader?WfJVLp&view=11,301,1385,0,-html

http://forums.poz.com/index.php?topic=17352.0


"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

Offline stevevaboy

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Re: Why am I so tired?
« Reply #36 on: February 19, 2007, 02:50:23 PM »
I can soooo relate to the fatigue thing, but that was BEFORE I started meds.  My CD-4s were around 325 or so and viral load wasn't outrageously high, but once I went undetectible it made all of the difference.  I'm going about my business all day with a sustained energy level now and feel much more energetic.  I work out and stay as active as possible - keep that blood pumping!!!!  Exercise is a huge help!!

Best of luck!
;0

Offline Fosbery

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Re: Why am I so tired?
« Reply #37 on: February 19, 2007, 03:10:24 PM »
Hey Sdgirl,

I have the same problem, I'm not on meds either, and when I get home after work if I dare to lay on the couch I'm out for a couple of hours easy, then I go back to bed at 11.30 till 7 am, however I have not been able to sleep through the night for quite a lot of years now, even before HIV, but I definitely feel the deference since HIV. When I talked to my doctor he also sort of dismisses it to lack of exercise,and he may be right, see I have gained 30 pounds since finding out, I quit going to the gym on a regular basis, so now I do try to get to the gym to see if my energy level goes up, he says it will if I lose weight and workout. But yes there is no doubt the HIV takes allot out of our bodies because it has to fight against it all the time. 

I'll let you know how I feel as I try the gym again.

Offline Fosbery

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Re: Why am I so tired?
« Reply #38 on: February 19, 2007, 03:19:01 PM »
Hey Optionsf,

That Super Nutrition Men, do you know if that is availble in Canada ? Would like to give it a try, don't know if I orderd it online that it would not get held up at the border.

Fosbery

Offline jack

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Re: Why am I so tired?
« Reply #39 on: February 19, 2007, 03:33:30 PM »
I used to have the very tired thing all the time beginning with the drugs in 1989. Many mornings I would have to lay down and sleep for two hours. I always had a lack of energy through out the day.
Now, all of sudden,the last two years have been entirely different. I get up everyday between 4am and 4:30am, and am not tired at all during the day. I go to sleep around 9:30pm.-10pm. I have more energy than I have ever had. I dont know what has happened. For instance Saturday, I road 30 min on exercise bike,went on a fast 3 mile walk and then walked 18 holes of golf in afternoon. Never felt tired the entire day. A couple of years ago the exercise bike workout in the morning would have put me down for the day.

Offline manchesteruk

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Re: Why am I so tired?
« Reply #40 on: February 19, 2007, 03:37:42 PM »
I know exercise obviously isn't an option for some but for those who can it has helped my energy levels tremendously.
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline tsw923

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Re: Why am I so tired?
« Reply #41 on: February 19, 2007, 09:28:56 PM »
i still get tired sometimes.  On the advice of another thread, I started taking B12 pills and it has helped somewhat. Also, I've been making it a point to do about 1/2 hour (at minimum) exercise a day.  There are days though that I get completely exhausted and on those days I do listen to my body and ret as soon as I can.

Ty
Help find a cure for leukemia, lymphoma, and other blood-related cancers by sponsoring me as I walk a 1/2 marathon as a part of the Maryland chapter of Team in Training.  To find out more and to donate, please click on the following site:  http://www.active.com/donate/tntmd/tswtntmd

Offline allopathicholistic

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Re: Why am I so tired?
« Reply #42 on: February 20, 2007, 08:40:47 AM »
I'm being put on Ritalin next month for fatigue. I'll let you know how it works when I get started.

Please do. Best wishes. Warm hug Rodney. "Dominus providebit" baby. And same to you AlanBama

(I thought Ritalin was a Rx for kids. Time for me to Google)

Online RapidRod

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Re: Why am I so tired?
« Reply #43 on: February 20, 2007, 09:15:39 AM »
Quote
(I thought Ritalin was a Rx for kids. Time for me to Google)
allopathicholistic, Instead of the actions of a depressives used in children, it acts as speed for adults.

http://www.sfaf.org/treatment/beta/b47/b47fatigue.html
« Last Edit: February 20, 2007, 09:33:47 AM by RapidRod »

Offline racingmind

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Re: Why am I so tired?
« Reply #44 on: February 20, 2007, 11:16:46 AM »
It's strange...In the beginning after my diagnosis (a a few months prior to diagnosis), I was more tired than usual.  I found myself taking naps in the afternoon and going to bed really early (like 9-9:30) because by that time I was completely exhausted.   Looking back, I attribute that to seroconversion prior to diagnosis, and mental exhaustion and slight depression after diagnosis.   A few months later I gave up a 20 year smoking habit and started excercising.  This helped tremendously. 

However, over the past week or so, I find myself sleeping later in the morning and having difficulty getting out of bed. I did have a session with a personal trainer (who kicked my ass) and that caused all kinds of muscle soreness.  I think my body needed to recover.  I'm back to the gym today. I hope that I can regain my energy because I hate feeling tired all the time.  I'm not on meds yet and have just been taking supplements and DanActive.   I have been feeling good.   I'm up for labs next week and hoping that my positive efforts will be reflected in my numbers.

In short, I would say excercise is a good method to help restore energy.  I like the natural high.  I like to do a powerwalk on the treadmill for at least 40 minutes. 
Tested Negative: 5/06
Tested Positive: 9/06 
9/06: CD4: 442 (28%) VL: +100,000
10/06: CD4: 323 (25%) VL: 243,440
11/06: CD4: 405 (28%) VL: 124,324
12/06: CD4: 450 (29%) VL: 114,600
1/07: CD4: 440 (27%) VL: 75,286
3/07: CD4: 459 (30%) VL: 44,860
5/07: CD4: 353 (24%) VL: 50,852
7/07: CD4: 437 (29%) VL: 39,475
9/07: CD4: 237 (32%) VL: 372,774
10/07: CD4: 324 (27%) VL: 115,454 
Started Atripla: 10/07
11/07: CD4: 524 (?%) VL: Undetectable!
2/08: CD4: 653 (35%) VL: undetectable
5/08: CD4: 822 (40%) VL: undetectable
8/08: CD4: 626 (35%) VL: undetectable
12/08: CD4: 619 (36%) VL: undetectable
3/09: CD4: 802 (38%) VL: undetectable
7/09: CD4: 1027 (43%) VL: not tested
10/09: CD4: 1045 (43%) VL: undetectable

Offline SASA39

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Re: Why am I so tired?
« Reply #45 on: February 21, 2007, 08:37:59 AM »
1.Depression ?
2.Stress / Post Traumatic Stress Syndrome ?
3.Lack of Testosterone  hormone ( males ) ?
4.Dysfunctional spleen ( SGOT SGPT ) ?
5.Anemia : lowered red blood cells , hemoglobin ?
6.Latent infection going on ?
7.Lousy sleeping ?
8.No enough rest ?
9.No exercises ?
10 Low blood pressure ?
11..............low atmospheric pressure , lousy biorhytm , ..................... ?

More on this on www.thebody.com
Dr Bob is a major one for that issue..............................
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline allopathicholistic

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Re: Why am I so tired?
« Reply #46 on: March 08, 2007, 09:51:29 AM »
allopathicholistic, Instead of the actions of a depressives used in children, it acts as speed for adults.

http://www.sfaf.org/treatment/beta/b47/b47fatigue.html

Thanks Rodney for sharing this link from SFAF with us.

To everyone: If you're a a non-scientific person who loves to throw questions at doctors :D, you might want to bookmark it because you can gain so much information from it especially on anemia, e.g., information on Epogen, Procrit, low hemoglobin, low hematocrit, bone marrow damage, hemolytic anemia and G-6-PD. I had no clue that "6090% of people with HIV have some degree of anemia at some time during the course of their illness." Wow.

Many thanks RR!  :)

Alex
(Who's posting this for the search function to capture the words above)

(P.S.: Although the article is long you can read it in chunks. Also, it seems some of the anti-retroviral drug data is outdated because it's from 2001)

Offline David_CA

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Re: Why am I so tired?
« Reply #47 on: March 08, 2007, 10:04:44 AM »
I'm being put on Ritalin next month for fatigue. I'll let you know how it works when I get started.

I used to take Ritalin for ADHD.  It works fine, made me feel good, and gave me lots of energy.  It also made me feel too wired and sweat like hell.  If it doesn't work well for you, or if you have the same effects, the long-acting version seemed to be a little better.  I take Adderall now, which is basically pharmaceutical speed.  It doesn't make me as wired or sweat as much, but does help with fatigue (and ADHD, too).  Plus, it makes one feel good!  Good luck with it. 

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Ldn+

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Re: Why am I so tired?
« Reply #48 on: March 08, 2007, 05:19:24 PM »
Amazing.  This is SOOOOOOOOOOO me too.  There are some moments when I'm absolutely exhausted all the time!  I've noticed this over the past few years, especially as my sinus infections and eczema has gotten worse.  (Now that I'm diagnosed I can see - in hindsight - that these are all symptoms of being hiv+). 

Plan to ask my doc about the exhaustion at my first appointment for my bloods.
28.02.07 -- Diagnosis
28.03.07 -- CD4 620 / VL 27,600
21.06.07 -- CD4 570 / VL 12,900
04.10.07 -- CD4 367 / 26.8% / VL 11,604
11.10.07 -- CD4 510 / 29.9% / VL 7,734
31.01.08 -- CD4 453 / 24.9% / VL 27,700 (Symptomatic)
21.02.08 -- CD4 395 / 27.4% / VL 27,000
02.04.08 -- Start Efavirenz + Truvada
15.05.08 -- CD4 509 / 32% / VL 78
12.06.08 -- CD4 557 / 28.6% / VL >50
11.09.08 -- CD4 744 / 35.3% / VL >50
27.11.08 -- CD4 798 / 35.5% / VL >50
19.02.09 -- CD4 726 / 36% / VL >50
21.05.09 -- CD4 654 / 43.6% / VL >50
02.07.09 -- CD4 558 / 39.8% / VL >50
02.07.09 -- Side effects on 1st combination. Switch to Atazanavir + Ritonavir + Truvada
13.08.09 -- CD4 686 / 40% / VL >50
10.12.09 -- CD4 901 / 37% / VL >50
04.03.10 -- CD4 704 / 35.4 / VL >50
20.05.10 -- Next results

Offline livingpos

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Re: Why am I so tired?
« Reply #49 on: March 08, 2007, 07:29:51 PM »
Thanks Lisa for starting this thread and for all who added to it. I was diagnosed at the time of seroconversion and felt debilitating fatigue for 4 months. It got a better but never returned to normal. My doctor was very supportive and checked all the possible reasons but luckily (?) it came down to the body using its resources to fight the virus 24/7. I have so adjusted to the fatigue that I forgot its not normal. I start work at 7:30 and its an intense, active, on-the-go environment. I am tired by lunchtime and exhausted by 3:30. I am pretty useless in the evenings when I get home around 5. I simply no longer make evening plans during the working week. I go to bed at 9pm and sleep until 6:30am. I feel refreshed for Monday and Tuesday but the decline sets in about Wednesday and Thursday and Friday are a drag. Its strange what we can become accustomed to. I am not on meds yet either.

People at work do not always understand that I just cannot do as much as I used to. I was hyperactive! I can't blame them as they don't know the reason for it. But its still difficult dealing with them noticing a decline in productivity. Friends who I have told about my HIV are more understanding and miss me in the social activities of the group. I have asked them to continue to invite me as that means a lot but to understand that I might bow out early or all together.

all the best to you all
Jonathan

 


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