POZ Community Forums
Main Forums => Living With HIV => Topic started by: Rightbrain on April 05, 2008, 10:48:05 pm
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Hello all,
I was wondering if it's common to be fatigued with an undetectable VL. t cells are not that great. Last test about a month ago showed 337. I also take Atripla and testosterone is fine.
HOW COME I'M NOT NORMAL ANYMORE?????
brother joe
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HOW COME I'M NOT NORMAL ANYMORE?????
brother joe
Brother Joe, if you find out - tell me! I have CD4's between 475-500 now and an undetectable VL, and I feel like I just woke up all day most days. I started a new combo just this very evening (about 2 hours ago), and am hoping a new lease on life comes with it.
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I am right there with you Brother. My CD4 was 825 (the highest it has ever been) and VL has been <50 for years. If I am not careful I fall asleep at work, am always tired, have droopy eyes and in general look like I get no sleep. Even when I think I sleep pretty good the same things happen. I just think I am tired in general and there doesn't seem to be anything I can do about it. A friend takes a stimulant he recommends and my DR asked me if I want one but I have refused.
David
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Thanks for the feedback, guys. Some days I just really wear out and other days it's just minimal. For the last couple of months there has been some level of fatigue every day. I know my T cells are out of the danger zone, so maybe it really has nothing to do with numbers. I always sleep well--just ask my wife who listens to me snore!
brother joe
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A friend takes a stimulant he recommends and my DR asked me if I want one but I have refused.
What the hell's the matter with you? ;D
I'd leap on a stimulant if it was offered to me, but fat chance through my ADAP. A lot of the people there got HIV via liaisons with crystal meth or crack, so they are loathe to pass out scrips for stimulants. I don't even know if they have them on their formulary. Best I can get is a shot of B-12 which works like magic...for about 20 minutes. :-\
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Hey Joe,
One more thing since you mentioned snoring. It may be nothing but then again snoring when severe can certainly cause you not to rest as well as you could. I used to not even be able to take a nap because the minute I dozed off I would snore myself awake. I took Ambien for years and had to keep taking more and more just to get at least six hours of sleep.
Anyway all that aside I had a procedure done in 2004 called injection snoreplasty. It was developed for the military because snoring soldiers in the field would be too loud and might attract the atention of the enemy.
What the procedure does is they inject a silicone material into the soft tissue that flutters when you sleep to stiffen it up and stop the snoring. The whole thing takes about a half hour and was $250.00 when I had it done. Insurance does not cover this procedure.
Let me tell you too that the same night as the procedure I stopped a 5 year Ambien habbit and began sleeping and being able to take naps normally. I am not saying you will get the same benefit or that the procedure is even right for you but severe snoring is a culprit in a lot of fatigue cases.
The DR said I may need more than one visit and 4 years later I am probably ready to go back. I do snore again but not as badly and I am still able to take naps so there is still some benefit.
Make sure your snoring isnt sleep apena or some such and rule that stuff out if you can.
David
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What the hell's the matter with you? ;D
I dunno. It just doesnt seem like a good idea to me. It sounds like speed and I had a run in with that back in my school days.
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I suppose we should stick with this thread...as we are the only three members online right now.
Actually, it's gonna be just you two soon. I am off to bed.
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I dunno. It just doesnt seem like a good idea to me. It sounds like speed and I had a run in with that back in my school days.
So get the scrip and mail 'em to me.
Jeez. Do I have to spell everything out with you or what? ;D
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So get the scrip and mail 'em to me.
Jeez. Do I have to spell everything out with you or what? ;D
We determined earlier today that I am dizzy so yes please do spell everything out.
Thanks so much. :P
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We determined earlier today that I am dizzy so yes please do spell everything out.
Thanks so much. :P
S-E-N-D M-E T-H-E C-R-A-N-K.
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S-E-N-D M-E T-H-E C-R-A-N-K.
OK GEEZ Crank, meth, crack, Tina So many names for stuff. How's a girl to know?
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OK GEEZ Crank, meth, crack, Tina So many names for stuff. How's a girl to know?
Names, schmames...All you need to know is the address to send it to.
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Names, schmames...All you need to know is the address to send it to.
OK well dont post it whatever you do! I just checked to see what the 179 guests are doing and most are viewing this thread. So to get back on topic, Joe, I hope yoiu are getting some rest since you did sign off. I will be going soon too as I see someone on manhunt wants my attention ;D
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OK well dont post it whatever you do! I just checked to see what the 179 guests are doing and most are viewing this thread. So to get back on topic, Joe, I hope yoiu are getting some rest since you did sign off. I will be going soon too as I see someone on manhunt wants my attention ;D
see how you are.
yes...good rest to you, Joe.
and g'nite to you, dizzy.
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This is a topic that surfaces now and again because so many HIV+'s deal with this issue. Here is a link to a recent thread:
http://forums.poz.com/index.php?topic=19682.msg251588#msg251588.
Hope you find some helpful advice and/or suggestions in this previous exchange, as well.
Mike
misspelling edited
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I'm not on any meds and have been infected about 18 months most likely. I have a VL that runs 2-600 and have run 800-1200 cd4 so, i have great labs. i get episodes of fatigue. The Dr. basically said i have a viral infection and episodes of fatigue aren't an unusual. They were debiltaing and freqent they aren't anymore. When it comes it's the bone numbing kind where my tongue feels thick and i have a hard time paying attention and feel exhausted but cant sleep. I can't take stims but have in the past for ADD.
I am on Welbutin now. It seems to help the ADD stuff and also seems to be aid alertness/wakefulness for me but is not a stimulant. It has similar side effects to the ritalin i was taking and it's structure is similar to an amphetamine( that khet the Ethiopians chew) but isn't one. There is no buzz at all and it's not something anyone would abuse but, it seems to help both my depression, ADD and fatigue.
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I complained bitterly at every doctors visit about fatigue to no avail . Finally my GP sent me to a allergy specialest . I am allergic to every thing in Alabama apparently . He is treating me with nasal cortisol stuff and a strong antihistamine . I also got a script for testosterone gel and I feel SO much better these days .
I sometimes still take an afternoon nap but I'm 80 % better than before . I know everyone has there own medical reasons for fatigue , I just got lucky after years of trying to be well again .
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I am allergic to every thing in Alabama apparently .
Oh, I can relate to being allergic to things in Alabama.
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I hope its not me !
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Rightbrain
Just in case you didn't spot it before, there's a pretty informative piece in the lessons on fatigue.
http://www.aidsmeds.com/articles/Fatigue_10778.shtml
Hope you feel better
A
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I've been positive going on 8 years and have been fatigued ever since then! This is my theory...being hiv+ causes fatigue because our bodies are always fighting and working to replicate the disease. Even when we are at rest, our cells are still working. Our doctors won't agree to this because I don't think they can medically prove this. I say this because when my son was teething as an infant, he had diarrhea & fever. His pediatrician told me at the time that every parent knows those are symptoms of teething but because medical science can not prove these symptoms, the medical community can not diagnose them as symptoms. There is so much about the human body that we don't know. Our bodies are mysterious and wonderful machines that don't always function they way we want them to.
I've been on Atripla for about 5 months and still get the dizziness and fatigue it causes. Even when I wasn't on meds, I was fatigued. Sometimes I'd be so tired at work that I'd have to take a nap in my car during my lunch break. I've noticed my fatigue sometimes corresponds with my stress level and my emotions. Other times it just washes over me like a fog and I have to stop whatever I am doing to rest. I don't think we positive people have reserves like negative people. When we are tired and done, we are done. We don't have that reserve pool to draw from. Our stamina just isn't what it used to be...unfortunately. For me it is frustrating because it is another reminder of how the disease makes me different.
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There have been many days I have naped in my car during lunch too. I don't do it now because I come home every day at lunch to walk my dog. That doesn't mean I couldn't use a lunchtime nap because I could.
The problem also is that as bad as we feel and as tired as we are as long as you have decent numbers you couldn't get disability if that was your only defining criteria. There was a time when this type of fatigue could would qualify you for disability, but no more. That's not to say I feel completely disabled or unable to function because I am too tired. It's just that some days are much worse than others and on those days work doesn't even seem to matter. You just want to be able to sleep as much as you want.
David
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Thanks everyone for the advice. It helps to know others are going through the same thing. AND--I will always settle for pitty in place of love.
brother joe
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I asked my friends here for input about fatigue last year, and got tons of good input: http://forums.poz.com/index.php?topic=16151.0 (http://forums.poz.com/index.php?topic=16151.0)
I will say that due to the never-predictable rhythm of life, I never got the sleep studies info, and I never asked for the testosterone studies, but I did quit smoking, and I have to say that while it's a struggle, I've been good about being a non-smoker. And I don't feel as fatigued! I really think that was the crux of my health issues, as more and more my previous symptoms are resolving.
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This is a little off the subject, but I thought of it with dgr20002's post of fatigue not qualifying for disability and how much things have changed over the years. I am wondering if anyone else has medical care givers who are nonchalant about your fatigue? I love the person that I see and she has been wonderful in the health care that she provides. Sometimes however, I feel that because she's been working in the hiv/aids field for the last 20+ years she's seen really ill people. When she sees me who is undetectable, fairly healthy but just dealing with side effects...it is kind of like "Suck it up lady and keep on going." I am very lucky for how healthy I am and I feel for those worse off than me, but it doesn't take away from the fact that I'm still going through these things.
Sometimes I think "living" with the disease is harder than being sick with it.
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positively_me, "Sometimes I think "living" with the disease is harder than being sick with it."
No, dear. No. No. No.
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Sometimes I think "living" with the disease is harder than being sick with it.
Obviously, you've never had a bout with an OI.
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Oh yeah...I've had my bouts. I had a horrible case of MRSA last year that made walking almost impossible and I've had thrush off and on since being infected whenever I get run down. I've also suffered through all the nasty side effects from hepatoxicity to diarrhea to jaundice. Not to mention the sinus infections I get. Last year I was in bed for 3 days without eating and was only able to suck on ice chips. Oh and throw in a kidney infection too. I've had my share of the yucks. I just meant that people are more understanding (I think) when you have a tangible illness like an OI rather than seeing you day in and day out as a positive person. They think that you don't have to deal with the disease when you're not sick.
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I can relate. I am undetecable but there are days when I am exhausted. I workout 4xweek but some days I am very very tired. Just yesterday I literally slept for 13 hours . Even though I am undetectable some days I just need a lot of sleep. Not sure why
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I understand what you are saying now, positive_me. My doc generally weighs everything in relation to the coffin. Unless you are wasting away before his very eyes or sprouting a third arm, most complaints are met with tepid interest.
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I understand what you are saying now, positive_me. My doc generally weighs everything in relation to the coffin. Unless you are wasting away before his very eyes or sprouting a third arm, most complaints are met with tepid interest.
I was wondering if it was just me. I'm sorry to hear that you get it too thunter34. I guess our doctors know how bad things can be and they've seen it first hand so they aren't as moved by our plights. Kind of sucks but sometimes it's good for me because it makes me buck up and get on with life. ;)
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I guess our doctors know how bad things can be and they've seen it first hand so they aren't as moved by our plights. Kind of sucks but sometimes it's good for me because it makes me buck up and get on with life. ;)
And there ya have it.
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I just want to add I did talk to the DR a few times about the fatigue. He just doesn't seem to get it. I mean to just off the cuff offer me a stimulant as if that's is going to make things all better. It will probably mess something else up. Also the DR seems to like a wait and treat approach. I mean you can talk about stuff but if he can't see it and it isn't on your test results he doesn't think anything is wrong. He says my numbers are too good to think about disability. I wouldn't give it a second thought but if I sleep at work and get caught a few times I won't have any disability insurance to worry about.
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Pearls of wisdom from the old guy (who doesn't want to go back and read the whole earlier thread):
We all have our good days and bad ones, bro. I've been taking these drugs for twenty years, and if there is one thing that I can say with certainty it's that no one really knows all the answers yet. HIV is a twisted little bugger that's been playing April Fools with us for mucho tiempo. There are some days when I've got my mojo and some days when it just isn't there. Is that HIV? Is it the chemicals? No one knows.
David (one of the many Davids here,) who has been riding this bus for a very long time...
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I'm 600odd, undetectable VL, good ratios etc, good testosterone levels, and occasionally have major fatigue issues... Personally, I think its the virus doing its screwy thing in our bodies...
Depression could also be a contributing factor (nearly all the poz people I know are on some form of antidepressant)
Some days are good, some days are very bad...
Live gives you lemons, make lemonade :-) (and make sure to have your vitamin B's, they seem to help me a little)
J
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For whatever it's worth, I had good results with low dose (50mg) Seroquel (a serotonin uptake inhibitor) for depression, but talk it over with your doc.
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Hi,
Hello all,
I was wondering if it's common to be fatigued with an undetectable VL. t cells are not that great. Last test about a month ago showed 337. I also take Atripla and testosterone is fine.
HOW COME I'M NOT NORMAL ANYMORE?????
brother joe
Sometimes the meds themselves can make you tired. While I don't have first hand experience (no meds for me yet - knock on wood), my bf was doing poorly on Atripla too despite becoming undetectable within 2 months of taking it. He was on it from March 2007 to December 2007. He was switched then to Truvada/Norvir/Reyataz. Ie the doc replaced the Sustiva component of Atripla with Reyataz/Norvir. He has been visingly better since. But he still has a low sex drive. I'm not sure if it's due to the meds, though. But it frustrates the hell out of me ;).
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I can relate to the low sex drive too. It is either the HIV or the drugs or both. It started at the same time that I started the drugs and that was when my CD4 was low anyway. I have my moments but nothing like years ago.
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when I wrote earlier in this thread that I now take testosterone I forgot to mention that my testosterone levels were normal when tested . I found a doctor that gave me a script anyway and it helps allot with the fatigue and my sex drive is back full force . Ive so far haven't had any problems like testicular shrinkage or any of the other things my ID doc said could happen . I was so tired all the time I was desperate enough to try anything..... My ID doc who was so against letting me try androgel now concedes that it seems to have worked in my case ... I'm not suggesting everyone try steroids I just know that I went from miserably tired all the time and back to near normal within weeks .
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I can relate to the low sex drive too. It is either the HIV or the drugs or both. It started at the same time that I started the drugs and that was when my CD4 was low anyway. I have my moments but nothing like years ago.
I'm so relieved that neither (HIV nor drugs) inteferes with my sex drive.
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I have wondered if women have some of the hormonal problems that HIV and meds can have on men ... Until I joined this forum I never knew or talked to women who were HIV poz .
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I'm so relieved that neither (HIV nor drugs) inteferes with my sex drive.
Betty, you lucky devil....my sex 'drive' is in 'park'.
jg, testosterone helped me tremendously, also; like you, my levels always tested at "normal" but I found a doctor who believed that men with HIV need higher levels than those who are negative.
Brother Joe, I had a smart nurse explain it to me like this once: you know how when "normal" people get the flu, how it just knocks them on their butt for so long? That is their body fighting a virus. Ours is doing that, to a degree, all the time....so with that, comes the fatigue. Makes sense to me.
Find you a "steroid doctor"!
hugs,
Alan
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Like the woman in the movie Fried Green Tomatoes said " Honey git yourself some hormones "
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I can relate to the low sex drive too. It is either the HIV or the drugs or both. It started at the same time that I started the drugs and that was when my CD4 was low anyway. I have my moments but nothing like years ago.
sex drive? whats that?
its REALLY annoying for me and the other half :-(
J
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i may be a new pozzie 4 months in but i suffer from terrible fatigue during the day to the fact that i am week and carnt do anything, its good that work are understanding about my condition (i have disclosed)
had my latest bloods back today and another huge drop in cd4 in 4 months have gone from 1273 to 652
and the past few days my fatigue has become more serious
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You poor men. Wouldn't Viagara or Cialis help out any? I'm grateful we women don't have to worry about getting anything 'up.' Of course though, we do have to be concerned sometimes with dryness, but there's always lube for that (and many different kinds, I'm happy to report).
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Viagara ... that stuff is too expensive , I thought about making a splint for it out of popsickle sticks .
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Viagara ... that stuff is too expensive , I thought about making a splint for it out of popsickle sticks .
That sounds a tad uncomfortable for the receiving end.