I am spent ?!?!

[forrest]

Hey guys

This is geared towards those who took awhile before starting meds, or still have not started meds vs those who went on them right away after finding out hiv+

I am a bit surprised... a little background... I am 6ft, 162 pounds, and in generally good shape.  I state this to give you an idea that I am not overweight... I don't smoke... I hardly ever drink... I have always lived a pretty healthy life.

I went out for a 5 mile hike in the foothills (something I've done before) this past weekend and then I came home and did all that spring cleanup sort of crap you have to do the lawn (edge, mow, pull weeds, etc.).  Nothing huge IMO.  I was out in the sun quite a bit.

I was absolutely spent on Sunday and was still feeling pretty tired today!!  I'm like wtf?

You can see my numbers in my signature. 

Is this just part of being positive but not being on meds yet?  I know that my doctor has stated that when you are not on meds, your body fights a battle 24/7 just to maintain, thus another reason he wants me to start meds.  I am just a little taken aback that I am this tired from doing those things on Saturday.  Typically, I have always been able to just go, go, go but I am wondering if maybe the hiv is playing a factor here?

Just wondering if you have experienced the same sort of thing prior to going on meds or are experiencing (folks like Ann, Spacebar, etc... I know you guys haven't started meds yet). 

Thanks a lot!!

[surf18]

i can remember two months before dx i just became crazy ass tired. like I've never felt before. like so heavy tired after work. made my workouts so hard. in the mornings too i was just plain beat. even resorted to caffeine pills! this is when i knew something was not quite right so i made dr appt. Told them to test me for everything under the sun. She said hiv? I was like sure. Never in a million years would i have thought id have it. No way not me.
At dx they think i probably had it for like two years. Load was 16,000 cd was 225.
Went on meds and regained energy.

[spacebarsux]

Just wondering if you have experienced the same sort of thing prior to going on meds or are experiencing (folks like Ann, Spacebar, etc... I know you guys haven't started meds yet). 

Thanks a lot!!

Hey Forrest,

I don't think I have had any major fatigue that I can attribute to the virus. Sure, there are days when I feel tired, but I feel that's kinda normal and not out of the ordinary.

As I’ve said before, I'm sure I've been infected since 2005/06 though only diagnosed in Jan 2011, and so, I like to contrast how I felt prior to diagnosis (but post infection) as compared to post-diagnosis.  And the answer is that pre-diagnosis I was very active and used to gym regularly etc, whereas post-diagnosis, I completely let go of myself and started binge-eating, stopped exercising altogether (literally) etc. The result is that I've piled on an obscene amount of weight, which in turn caused/causes me to feel lethargic and dull now and then. Any fatigue that I’ve experienced, is thus, I'm fairly certain, a direct result of the sudden weight gain, especially around my midsection, and not due to the virus.

However, I have two, longstanding, partially-manageable, chronic HIV-related problems. The first being an irritable bowel syndrome of sorts (not exactly diarrhoea as much as a feeling where I need to go to the loo 3-4 times a day, at the bare minimum- sorry for the TMI); and the second, recurring Seborrhoeic dermatitis (pimples on my scalp). Probiotics and dietary adjustments have immensely helped my stomach; frequent shampooing has helped my scalp-problem.

That said, HIV affects everyone differently and if you feel that it is causing you to feel constantly tired and listless, I don’t think it’s a bad idea to discuss this with your doctor and/or consider starting meds. Just don't trick your mind into thinking you're feeling tired just because you now have HIV, if you know what I mean. 

Best

[emeraldize]

Hi Forrest,

I think I've replied to a similar call for input from you in the past, but not tied to your experience of fatigue.

I went for seven years before going on meds. VL never got much above a couple thousand, ever--but CD4 were just slowly melting, % stayed remarkably good.

If I had it to do all over again, knowing what I know now, I would go on meds before the CD4 slipped past 500. I agree with your doc's perspective.

The climb of the CD4 has been slow. VL is UD and percentage is good.

Em

[leatherman]

age and HIV can both be big components to fatigue.

Many people report before starting meds that they were often extremely fatigued. After starting meds they report a rebound in energy and renewed health. (unless of course the renewed health can bring on Immune Reconstitution Syndrome (IRIS)  - another reason to not wait too long to start meds - and then those peeps feel like crap even though they are actually getting healthier.   )

However, on the other end of the spectrum, the long term inflammation response engendered by HIV itself (along with how much immune system damage there was before meds or what OIs one might have had) often results in a sort of "accelerated aging" issue and it's own fatigue after many years.

HIV makes it harder to pin down these issues; but in the long run never underestimate plain old aging to be a factor in whatever you are feeling whether on meds or not. However in your case, you might just experience a health/energy boost once you start meds or you might just be feeling your 40+ years.

[forrest]

Thanks for the replies.

I think, too, that I may be dehydrated. I know it was the warmest day of the year so far... but man... just never have had issues like this... so I struggle with "you're just getting older" - I really do think the hiv makes me fatigued and I can't do the same things at the same caliber   

@Em - you may have... and I just don't remember. The whole memory thing is really driving me nuts and is HIGHLY frustrating.  I am getting so tired of it and can't seem to get anyone to understand. 

I really do think at times it would be easier to just call it quits. 

Thanks again for the replies.

[spacebarsux]

I really do think at times it would be easier to just call it quits. 

Mate, this type of thinking is very unhealthy. I've been through it. Therapy sessions really helped me put things in perspective. I'd recommend you try it, it really is beneficial- and makes one realise how our thoughts can sometimes be our worst enemy.

Also, may I suggest keeping a journal or something?

Take care of yourself.

[Pilot]

Stating the obvious that HIV affects everyone differently. I have had fatigue issues for years and as I grow older and the virus grows older things have changed.  I don't have the get up and go I used to have and I am coming to accept that. Instead of chasing a guy like I used to I just wait until he comes back by and trip him with an apology and offer to by him a shot of geritol...lol

I might suggest you cut back a little on the things that seem to tire you out the easiest but not quit them either.  Your still in better shape than a lot of people I know who are negative.

[jkinatl2]

Thing is, the notion of "calling it quits" is not really an efficient way to check out. Unless of course you are talking about suicide.

And if you are, then this is a crisis situation. And you'd be both thrilled and appalled to see how this community can take our collective claws and teeth out of one another's spongy parts in order to rally in that situation.


But to just "give in" and let "nature (HIV) take it's course" is a beautiful, flawed romantic notion. Because, see, just letting it go would likely take years. Plural.

And during those years you would find your fatigue growing steadily, slowly worse. One month you might find a bike ride hard. The next month, a power walk woul be difficult. The next few months, just getting through your day would be a challenge. Coming home to a soft sofa and a remote control would be the extent of your activity.

Forget a social life. Once you lose your job (and yeah, that would happen after you've used up all your sick and vacation days, and called in enough) your "work friends" will slowly dissipate. Maybe keeping up on Facebook will retain/extend that process. But one by one, people with active lives will slowly drop away.

And with the memory issues, combined with no income, that comfortable sofa might not be with you much longer after that. A friend's sofa perhaps. Or a parents. And with the embarrassment and low self esteem that comes from that, combined with the frustration of having to take a rest on the way to (and from) getting the mail, you might find yourself a bit of a recluse. Or entirely so.

And this is, of course, without an opportunistic infection. This is simply the war your body would be waging against the virus.  Again, we are talking years.

Then, of course, the OIs start. Or should I say, they finally manifest. And maybe friends and family rally. Maybe then you change your mind and decide to live. Assuming you survive that crisis (or those crises) you might not ever, ever in your now-extended life, find the energy and spirit you had before you had decided to call it quits. Quits, it seems, will have called YOU.

You may or may not be physically disfigured from your illness. You might have lost so much body mass that you look, walk, talk, and behave like a very elderly man. You might have the ravages of scarring on your face, or the aftereffects of salvage therapy showing on a body that will identify you by sight as, if not a man with AIDS, at least a man who is very, very, very ill.

If I painted a rather bleak picture, well, that's the point. I came close to calling it quits several times. I managed, thanks to a wonderful support system (and I believe, a narcististic desire not to become a pariah) I managed to turn back in what I fervently hope is in time.

Whatever is going on with you today, and I am not in any way minimizing it, is pale compared to the horrors of what would happen if you decided to call it quits, no matter what the interpretation of the term.

I found that when I began in earnest to start taking the meds, my energy level spiked.  Four years ago I was winded by going to take the trash out, and only got the mail every third day. I made it to a sofa, to a bed, a kitchen, and a bathroom.

In the last year, I have gone skydiving, ziplining, rock wall climbing, a bunch of bowling, thrown about thirty dinner parties, fallen on my face in New Orleans after drinking my friend under the table. I have taken up yoga, burnt through one Wii Fit board and am stressing the second one, and am staring at my bike at the moment. Today I am taking homemade soup to two sick (negative friends) and taking care of my sick (negative) 25-year old boyfriend, who is sitting on the futon reading "Game of Thrones" as I type this.

In other words, I have turned my life around and am not only able to take care of myself, but able to give back a little too.

I am amazed at how wonderful, and how well, and how utterly FULL of possibilities my life has become. And all I have to do is take my goddamned pills.

I urge you to talk this out, here/with a therapist - whatever works for you. But please know, the inconveniences you describe are not necessary. I disbelieve that age is a necessary factor in determining one's energy level.

I have more energy, am doing more things at age 46 than I did ten years ago. Because I am making my health a priority. And yes, I am taking my meds.

I am also scary happy. I absolutely wish the same for you.

[Hellraiser]

If you even remotely doubt what he says look back through my post history and you'll see probably within my first couple of posts talking about how the virus had gone undiagnosed for years and slowly eroded my ability to function.  I was anemic and unable to do ANYthing except sleep, which led to me losing my job, then my apartment, and as I lay wasting away on my mother's couch I developed a staph infection which most likely would have killed me had I not immediately gone to the doctor's office.  Dying from untreated AIDS is a fate I would wish on no one.  Please don't even think about doing that.

[leatherman]

i think that any of us that have had AIDS can assure you that HIV, and the meds, and the hassles, and any side effects, and the stigma, etc are all a helluva lot more fun to deal with and a helluva lot easier to live with than dying from HIV. I wouldn't wish dying from untreated HIV on my worst enemy having watched my partners and best friends die from AIDS.

[spacebarsux]

Thing is, the notion of "calling it quits" is not really an efficient way to check out. Unless of course you are talking about suicide.

And if you are, then this is a crisis situation. And you'd be both thrilled and appalled to see how this community can take our collective claws and teeth out of one another's spongy parts in order to rally in that situation.
then you change your mind and decide to live. Assuming you survive that crisis (or those crises) you might not ever, ever in your now-extended life, find the energy and spirit you had before you had decided to call it quits. Quits, it seems, will have called YOU.

This is what I grasped from forrest's post- not that he was contemplating it but that he had fleeting thoughts of this nature.

Forrest, how are you doing buddy? Hope you're feeling better. Do let us know.

Best.

[forrest]

JKINATL2 - that was definitely vivid     And... exactly why when I said "quit" I wasn't talking about not taking meds... I sure as hell don't want to go through that... I was talking about suicide.  I would want to do it quickly, not slow and painful. 

Now, before anyone gets all freaked out... No, I'm not contemplating suicide. I really am struggling with being very tired right now... and I think that doesn't help my mental state.  I feel like I am just living right now... no purpose... really no value... and just a tainted person that no one will ever love.  Thus, the desire of calling it quits... That isn't even a full list... I just don't feel like getting into a long reply but felt like I needed to reply. I'm sitting here after going for a walk and doing the lawn... and then vacuuming... just not having much energy.

I hope that my numbers are going haywire right now. I would think that after a year of being steady that they wouldn't all go to shit in a 2 month period.

I do go to counseling... I've been to a lot of counseling in the past... but started up again due to dealing with hiv and work issues. I'm on my second counselor and not sure he's going to do the job either.  Hate starting over. I had such a great one before I moved where I am now that I really miss.  I really do think a change of "scenery" would be good. However, I also lack the self-esteem, energy, etc. to move on that front too. 

Sorry.. just feeling a bit hopeless and sad. Bear with me.  I go home next week and that will hopefully be good and a pick-me-up.  Don't worry. I'm not gonna commit suicide... I don't think I would have the balls to do it.  BUT, that is what I meant by quitting to make that clear.

Thanks for the thoughtful replies. Just can be difficult dealing with all of this. 

Peace.

[Valmont]

Well, I´m also in that case, diagnosed about 1 year ago, last CD 4 - 714 and VL around 85 K on diciember; i´ve been experimenting fatigue almost from the beginning and particularly when I don´t eat well (late or worst, if I jump a meal, I hate doing it, but had to a few times...) or if I excede me working (over 60 hours a week) and with stress.

I´ve been better everytime I was sleeping at least 8 hours and doing exercice; I´ve never had problems of fatigue because of sport.

I´m seriously thinking in going on med but my doc prefer waiting because of my CD 4 count.

3 weeks ago, I started taking Ginseng, definitively I has helped me a lot feeling better...


Edit to add:
Anyway, I feel so lucky and happy with my numbers and my condition, really, I don´t have anything to complain about...

[spacebarsux]

Now, before anyone gets all freaked out... No, I'm not contemplating suicide. I really am struggling with being very tired right now... and I think that doesn't help my mental state.  I feel like I am just living right now... no purpose... really no value... and just a tainted person that no one will ever love.  Thus, the desire of calling it quits... That isn't even a full list... I just don't feel like getting into a long reply but felt like I needed to reply. I'm sitting here after going for a walk and doing the lawn... and then vacuuming... just not having much energy.

I've been in that place and I can understand how you feel. How about making little changes one step at a time, each coming nearer to what you want in your life ? That in itself will start to lend a purpose and inject colour back into life, in my experience.

For example: You said you want to move, so why not begin making arrangements and gearing up for the process ? As for your fatigue, if you think it's HIV related, it's definitely worth talking over with your doctor and probably starting treatment.

Little adjustments go a long way.

Best.

[Alan_B]

If it makes you feel any better I'm 24, reasonably fit, not over weight, a light smoker but not a drinker have an active job and eat well. And I'm absolutely shattered all the time.

I went from neg to pos diagnosis in 6 months, with a cd4 of 490 and VL of 250k. I started meds about 2 months later and my numbers have been getting steadily better. But do I feel any better? Not particularly!

It effects everyone differently.

[Valmont]

But do I feel any better? Not particularly!

I´m expected to feel much better starting meds, be less tired, be able to do more thing, feeling less worried...