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Author Topic: Fatigue  (Read 6119 times)

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Offline mascmusl1

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  • Posts: 3
Fatigue
« on: September 02, 2008, 12:35:55 PM »
Looking for any suggestions anyone has found that helps with fatigue- been positive/long term survivor since 89, and just started meds 3 years ago, very lucky to have always been healthy with no symptoms until my cells dropped to 250 3 yrs ago and started meds, now tcell hang around 400 consistently- i work full time in corporate America, work out daily, eat well, get good nites rest- for the past year i struggle with fatigue and have started red bull energy drinks several times daily to get through the work day- recently started trying FHS products endorsed by Lance Armstrong, I take B12 injections twice a week- i was diagnosed with hypothyroidism a year ago- Dr says I'm fine and am on hormone treatment for it- but i just can't find my energy lately- seem to do all the right things- any one else having similar issues and have you found anything that helps?? sorry but taking naps isn't possible with my career schedule during the week

Online BT65

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Re: Fatigue
« Reply #1 on: September 02, 2008, 04:16:24 PM »
 I get fatigued quite a bit also and I think that's a common problem with LTS'ers.  Are you sure your hypothyroidism is well under control?  I know when it's too low, that can cause you to really be groggy.  I don't do Redbull, as energy drinks tend to make one "crash" after awhile/not sleep well etc.  I drink tons of water and that seems to help some, but it certainly doesn't alleviate it.  Anyway, good luck.
   Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline weasel

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  • Posts: 1,667
Re: Fatigue
« Reply #2 on: September 03, 2008, 06:53:08 AM »
hullo  :)

                i've been dealing with HIV for many  years !

           you sound like you have a full plate !

     I try to work   6  or seven hours a day !

    fatique is from the meds , I think I just got used to it , and life must go on !

 I do take breaks and a couple days a week only work  for a few hours !

   I do NOT use red bull type products ! , two cups of coffee in the morning is it !

   I agree with betty , the CRASH from those drinks really brings havoc to the system .

                                       best of health , you sound like your doing good .

                                                                                           karl
" Live and let Live "

Offline aztecan

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  • Posts: 5,394
  • 29 years positive, 57 years a pain in the butt
Re: Fatigue
« Reply #3 on: September 03, 2008, 11:28:37 AM »
Hey mascmusl1,

I understand where you are coming from. I haven't really found anything that helps, aside from a double espresso, and that is only temporary.

I get enough sleep, I exercise, I try to eat properly and well, take vitamins, etc., but nothing seems to alleviate it.

The only thing I can recommend is to keep on plugging along. That's what I do. Sometimes physical activity can help offset it when I feel really fatigued.

If you find a magic bullet, please let the rest of us know.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline dixieman

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  • Posts: 889
Re: Fatigue
« Reply #4 on: September 03, 2008, 03:25:34 PM »
I seem to have the same problem from time to time... too much energy one day then just not enough get up and go... so I'm back on my body for life diet... I do drink excessive amounts of coffee...turkish coffee I find gives me a kick... but, I drink yerba mate... and stinging nettle teas... and I'm generally on the go from 6am till midnight non stop... and rarely do I have time to just sit around... except at the office! plus I have found meditation really helps me... plus my testosterone bi weekly shots... and breathing correctly fills the lungs... it seems to work for me

Offline farb

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Re: Fatigue
« Reply #5 on: September 13, 2008, 06:57:38 PM »
I, too suffer from the dreaded fatigue monster, and with it was having problems with quite a bit of general, non-localized pain.  My general practitioner recently added amitriptyline to my regimen (thinking that the fatigue and pain sounded a lot like a mild case of fibromyalgia).  I was dubious at first, but much to my surprise, it seems to have helped.  Most of my pain seems to be cause-related now (sore shoulder, or wrist related to work), and with the reduction of pain has come an accompanying reduction of fatigue.  The only drawback that I've identified so far is that I now sleep like a freakin' rock and it takes two alarm clocks blaring set at fog horn volume to rouse me from the seductive embrace of Morpheus.  But, once I'm up and have my kick-start diet coke, I'm good-to-go.

I agree with the other posters who have suggested staying away from Red Bulls.  So many of those "energy" products are loaded with processed sugar that you get the sugar rush, followed by the body's response which is a massive insulin dump, which ends up just causing the so-called "crash."  If you need the caffeine, like I admittedly do, try combining a sugar-free source like coffee, tea or diet soda with a complex carbohydrate like fruit or a coarse-grain bread.  Like my grandmother used to say, a little bit of fibre never hurt anyone.

Good luck and best wishes,
Mike

Offline dgr20002

  • Member
  • Posts: 288
Re: Fatigue
« Reply #6 on: September 14, 2008, 08:18:19 PM »
I have fatigue issues too. Sleeping more doesn't really help nor does coffee or sugar. It's the worst at work using the computer at my desk. I literally fall asleep looking at the monitor. I was diagnosed in 1987 and have been on all kinds of stuff since then.

I think it is the HIV itself since no matter what drugs I have been on over the years the fatigue has always been an issue.  The Dr's like to test the testosterone which for many comes back on "the low side of normal". I have done androgel with limited success. Some Dr's blame depression too. Been there done that as well.

There is no definitive answer. You just do the best you can and in my case I get up and go for a walk when it's really bad.

David

Offline HopeandCope

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  • Posts: 55
    • Hope and Cope
Re: Fatigue
« Reply #7 on: September 14, 2008, 10:04:50 PM »
Has anyone tried Provigil?  I used it for a time with my MS/Fibromyalgia Fatigue and it was very efective.
Jude
Hope and Cope Support Site
A Safe Place for Families & Friends of HIV+ People
http://hopeandcope.blogspot.com/

Offline aztecan

  • Member
  • Posts: 5,394
  • 29 years positive, 57 years a pain in the butt
Re: Fatigue
« Reply #8 on: September 14, 2008, 11:13:23 PM »
Has anyone tried Provigil?  I used it for a time with my MS/Fibromyalgia Fatigue and it was very efective.

I hadn't heard of it so I googled it. It said Provigil is to improve wakefullness for those with sleep disorders. l

I think that might help, at least with the sleepiness I experience during the day.

How does it do with physical fatigue, like feeling worn out, rather than just sleepy?

Might be worth talking to the doctor about.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline HopeandCope

  • Member
  • Posts: 55
    • Hope and Cope
Re: Fatigue
« Reply #9 on: September 15, 2008, 03:57:11 AM »
Mark it does help with the physical aspects and I can still sleep at night on it. It was originally used for narcolepsy but have found that it is very helpful with MS fatigue.  Talk to the Docs about it, the uses for it are getting more widespread then originally.

There are days that my fatigue overwhelms me but I am finding the more that I do pool exercises the better I am with energy levels.   My Provigil use is not as much as before I started pool therapy so that is a good thing
Jude
Hope and Cope Support Site
A Safe Place for Families & Friends of HIV+ People
http://hopeandcope.blogspot.com/

Offline ubotts

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  • Posts: 347
Re: Fatigue
« Reply #10 on: September 25, 2008, 11:50:44 AM »
I have had fatigue too many times, and it is HIV related.
If I were you I wouldn't take any energy drinks at all.

Have you seen the news lately.. You need to know more about
what your drinking before taking it..

I have tried that as well, quite sometime ago and it did nothing for me
anyway....

But please, read up on these so called energy drinks. It was just on
the news what it contains, mostly caffeine but mega amounts..

If you drink a cup of cappuccino ( Italian black coffee) that should
get your ass going, that's for sure.

I was a hairdresser in the west Village and my boss used to make
us drink it when we had a real busy day, so we could keep up
with the clientele....

I was cutting hair so fast, every 10 minutes, I was saying next, next, next. lol ;)
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline tigger2376

  • Member
  • Posts: 462
  • too bad to die youngish!
Re: Fatigue
« Reply #11 on: September 26, 2008, 02:30:44 AM »
Energy drinks just have caffeine,guarana or synthetic 'uppers'. If you can take milk thistle to detox and valerian with mega vit c with your meds, has helped me
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline weasel

  • Member
  • Posts: 1,667
Re: Fatigue
« Reply #12 on: September 30, 2008, 11:26:09 PM »
hey mascmusl :)

 how have you been doing ?

 is the tired going away ?

i know it comes and goes in cycles !

 wish we could control that !

  i find it gets worse if i let it take hold .

   just try and beat it , sometimes it just feels right and you perk up !

                                                 hope to hear how your doing , karl
" Live and let Live "

Offline pointer165

  • Member
  • Posts: 43
Re: Fatigue
« Reply #13 on: December 29, 2008, 09:53:39 PM »
I have been using Provigil 100mg usually when I get that BLAST of fatigue around 6-7pm....and I'm very sensitive to drugs...this just makes you feel like you've had two cups of coffee...and as for the caffeine, I've completely stopped coffee..I LOVE COFFEE...but do drink fresh English Breakfast tea with honey now.....I was on these forums in 2006 and everyone "walked" me through the cancer I got in my ear canal...well the withdrawal from caffeine was nothing compared to the 6 months of chemo...that's for me....there's NO caffeine the day before you go for that dreaded CAT scan....my body reacts alot different than others to meds....so every 6 months I go for a PET scan...have the last one in 4/2009...then once a year...but anyway, the Provigil is helping me..I sleep pretty good most days and if I don't have enough, I go back to bed and have the luxury of rescheduling any appointments/gym..but there's this overwhelming fatigue that occurs no matter what..and this drug has helped me...it also comes in 200mg,needed prior approval, is NOT covered by the state ADAP Rx plan so I went through my private..I am very lucky to have THREE ways to get my drugs..my insurance has a small copay, so I only use it for controlled stuff and they give me a three month supply while everything else is done by my corner pharmacy once a month...so nice dealing with humans then through the mail!!

HAPPY 2009...
Cheers..
Tony(NYC)
Guamanian

Offline lucas777

  • Member
  • Posts: 60
  • 'Know Thy Self '
Re: Fatigue
« Reply #14 on: January 21, 2009, 06:29:21 PM »
Hi all!!
I'm using Pharmaton does an amazing 'job'. I posted on it before. If you want to know where I'm coming from with it  (lack of strength , energy fatigue) read my posts.  Now I'm up on the go all day makes me feel wide awake, have more energy , don't have to do my afternoon naps anymore. Natural based ,there is a website on it

http://www.pharmaton.com/com/homepage.htm

 :D ;) :)

best wishes lots of positive vibrations :D :D :D

Lukas.
"Give me a sense of humor, Lord, Give me the grace to see a joke,
To get some humor out of life, and pass it on to others."

Offline lucas777

  • Member
  • Posts: 60
  • 'Know Thy Self '
Re: Fatigue
« Reply #15 on: January 22, 2009, 07:08:47 AM »
I think I've done a mistake, didn't know that I shouldn't post here-long term survivors SORRY
"Give me a sense of humor, Lord, Give me the grace to see a joke,
To get some humor out of life, and pass it on to others."

Offline Miss Philicia

  • Member
  • Posts: 23,991
  • celebrity poster, faker & poser
Re: Fatigue
« Reply #16 on: January 22, 2009, 11:58:38 AM »
Though more commonly for ADHD, I know many HIV'ers who take Adderall for fatigue issues.  I've know others to take Ritalin and Dextroamphetamine.  Sometimes it comes down to how progressive your doctor is with such things, and/or how forcefully the patient is complaining.  Sometimes it's going to take repeated, consecutive doctors visits of forceful, pointed discussions on an issue like this to obtain any relief.

As far as I know each of those meds are going to have particular uses.  I think Dextroamphetamine is used in early HIV folks, but not later state one with possible demential complications.  It's things like that which probably make some ID docs cautious and will depend on how many other patients they've done this with.
"Iíve slept with enough men to know that Iím not gay"

Online BT65

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Re: Fatigue
« Reply #17 on: January 22, 2009, 10:45:08 PM »
I was strung out on Dextroamphetamine before and it had me hallucinating.  I'd use it with caution.  It's an older drug.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline ChefDD

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  • Posts: 28
  • White Whisker Cook (aka. ChefDD)
Re: Fatigue
« Reply #18 on: January 25, 2009, 11:56:40 PM »
I certainly know what you are talking about! I am a longer termer with a positive HIV test in 1986. My new dr checked the thyroid and is giving me synthoid for hypothyroidism. He says that could play a part in the extreme fatigue. I just started so I can't give a good first hand account. New studies have recently been published about thyroid dysfunction in HIVers. Have you had thyroid blood work?
ChefDD
ChefDD ( White Whisker )

Offline bigrob37

  • Member
  • Posts: 37
  • life is good
Re: Fatigue
« Reply #19 on: January 27, 2009, 02:00:33 AM »
hey everyone,
I wake up in the morning and soon after thatI am ready for a nap, sometimes I feel like the end is near.
Than jerry springer comes on and for some odd reason I feel pumped up for awhile.
A shot of emergen C packet in a shot glass really helps, you can get it at rite aid. It has a bunch of the vitamin bs and cs in it. I heard it from a pharmacist

Online Dachshund

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Re: Fatigue
« Reply #20 on: January 27, 2009, 04:49:13 AM »
hey everyone,
I wake up in the morning and soon after thatI am ready for a nap, sometimes I feel like the end is near.
Than jerry springer comes on and for some odd reason I feel pumped up for awhile.
A shot of emergen C packet in a shot glass really helps, you can get it at rite aid. It has a bunch of the vitamin bs and cs in it. I heard it from a pharmacist

Just a reminder bigrob, this is the Long-Term Survivors forum and we would respectfully ask you not to post or give advice here. Thanks.

Offline RapidRod

  • Member
  • Posts: 15,286
Re: Fatigue
« Reply #21 on: January 27, 2009, 11:47:20 AM »
mascmusl1, I was given Ritalin for CFS and it has done wonders for me.   

Offline mascmusl1

  • Member
  • Posts: 3
Re: Fatigue
« Reply #22 on: January 30, 2009, 08:44:57 PM »
thanks for all the responses.  yes i am being treated for hypothyroidism with synthroid.  i agree about the energy drinks, but when you have to work and keep up at the office sometimes one is forced to do what one has to - for me it was drink the red bull.  i have since stopped all energy drinks, changed my diet, cut way back on sugar (we southern boys like our sweets) no more fast food/sweet snacking and that has helped some.  I believe its part of being LTS, the meds, the toll its starting to take on my body and like many of you have said one just has to keep going.  I do the gym daily to get my day started and keep healthy- really keeps my mind clear and destressed.  In the early years of being pos and not on meds I never related to my friends who were and all the side effects, naps during the day.  Now its all caught up with me and I understand all too well.  i do get at least 7 hours sleep per night- am going to talk to the dr about something to possibly help me sleep more soundly; and I'll talk to her also about the Ritalin.  You guys were great for all the suggestions- thanks!

 


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