Fatigue without meds??
Sep 4, 2006
Hi.. firstly thanks for all your great info! this whole site is amazingly helpful and i particularly like the upbeat and sometimes light hearted spin on things that you and this whole site has! its nice to know that HIV isnt all doom gloom and death in the 21st century!
i have a serodiscordant rship (ptr is +ve and I am -Ve). he was diagnosed about 4 years ago, and has CD4 of about 380 now and while i cant remember his VL, i know his doctor said it is 'a little high'. but as yet he is not requiring meds. He is becomming increasingly fatigued and despite usually working a full week, on weekends its not uncommon for him to go to bed at 8:30 or 9pm and sleep until 11:30am the next day (15 hours straight!!) and then not do much during the time he is awake. some weeks he is so tired though that he can not work more than 3 days. his doctor seems to think that his fatigue is caused by depression. but i am now not so convinced that this is the whole story (although i think this could be part of the cause of the fatigue). the anti-depressants dont seem to make a difference and his attitude and outlook is so positive and upbeat. so now we're trying vitamin B12 injections. It frustrates the hell out of him to not have the energy to do what he wants to and i hate seeing him like that when he is otherwise more healthy than me (despite being the +ve partner)... we eat ok (not great but ok) and he takes vitamin pills and drinks soy milk for the B12 content (which we were told by his doctor is a good idea) ...anyways ... now that you know the back-story i guess what id really like to know is.. -is fatigue common amongst +ve people? even those not yet on meds? -what are the usual causes? (is it possible that its not HIV related?) -what can we do to improve his energy levels? -is this only going to get worse with time? -where can i get more info about HIV related fatigue?
thanks heaps in advance for your answer.. and again for all the positive education uve provided this otherwise naieve guy from down under!
Response from Dr. Frascino
Hello Down Under Guy,
Let's proceed directly to your specific questions:
1. Is fatigue common among HIVers? Yep, it's one of the most common things we virally enhanced folks complain about. Yes, even pozitoids who are not on meds yet.
2. Usual causes? There are many common and loads of not-so-common causes to consider. (See the posts from the archives below.) Is it possible it's not HIV related? Sure. Dubya got re-elected so I guess anything is possible, right?
3. Will this get worse with time? Not necessarily. In fact, it can get much, much better if you identify all the potential problems that are draining your partner's battery and specifically treat each underlying cause effectively. Batteries can be recharged!!!
4. Where can you get more info on HIV-related fatigue? Well, right here, silly boy! Just check the archives. I've copied a few posts, but there are gazillions of others for you and your stud muffin to peruse. Once you've read about the about the potential causes of HIV-related fatigue and their specific treatments, make a list of these and bring it in to discuss with your HIV specialist.
Things can and will get better, OK? I'm here if you need me.
Dec 5, 2000
My lover is trying to overcome fatigue. His CD4 is over 600, his viral load is undetectable, and his other labs are normal. It seems that he eats pretty healthy, and he has been tested for anemia. I would like any information anyone has regarding other possible causes of his fatigue. Thanks in advance.
Response from Dr. Frascino
Overcoming fatigue in the setting of HIV disease can be quite a challenge. Fatigue generally speaking is a subjective experience of low energy, weakness, and/or sleepiness that may affect daily activities. It's incredibly common in those of us with HIV disease. In fact, clinical trials have revealed it's our most common complaint. Discussing fatigue with your physician can also often be challenging especially when, as in your case, things appear to be going so well -- non-detectable viral load and good CD4 counts. Physicians are often so pressed for time these days they may seem a bit reluctant to evaluate you're a problem which to them does not appear to be all that significant. So don't be shy on insisting that the issue be discussed!
That said, what are some of the potential causes that you should consider? Well as it turns out the potential causes are indeed numerous and often it may be a combination of those causes that is ultimately responsible.
Rest, diet and exercise can play a significant role. Many of us who are HIV positive (as well as many who are not HIV positive) fail to get adequate amounts of rest and/or exercise and we often do not eat properly. With busy schedules it's often quite difficult to find time for exercise, eating well-balanced meals or even getting adequate amounts of sleep. This, of course, explains the astounding success of Starbucks. You mention that your partner eats pretty healthy. However, nutritional requirements often change due to a chronic infection like HIV. Consulting with an HIV knowledgeable nutritionist may be very enlightening and helpful!
Anxiety/depression is frequently associated with fatigue. Virtually all of us who are HIV positive have periods of feeling upset, worried, anxious or depressed. Psychological causes of fatigue in HIV-infected individuals are very treatable with counseling and/or medications.
Infections are often associated with fatigue -- for example cytomegalovirus, human herpes virus-6, MAC, TB, fungal infections, PCP and others. Fatigued individuals should pay close attention to any concurrent symptoms such as fever, cough, headaches etc. Of course, with your partners' high CD4 counts an opportunistic infection would be highly unlikely. So this would be pretty far down on the list of likely possibilities.
Hormonal imbalances can cause significant fatigue. Adrenal insufficiency results in inadequate production of adrenal hormones and can be caused by certain anti-HIV drugs, HIV infection itself, or by opportunistic infections such as CMV. Decreased testosterone levels are a very common occurrence in HIV positive men and can be associated with fatigue, decreased libido and other symptoms. Causes for decreased testosterone include drug side effects -- megace, ketoconazole ganciclovir and others. Other factors could include increased levels of cortisol an adrenal hormone that is produced in abundance during chronic infections as a normal body defense against stress. Low levels of thyroid hormone can also be associated with fatigue.
Medications whether HIV related or not can often have fatigue as a potential side effect.
Anemia, a decrease in red blood cells is one of the most common causes for fatigue in HIV infection. You were wise to have this checked out as a first line possibility. The causes of anemia include nutritional deficiencies -- iron, certain vitamins; anti-HIV drug induced -- particularly AZT; HIV related opportunistic infection -- MAC, parvovirus and others; and HIV itself -- this is termed anemia of chronic disease. All of us with HIV need to keep an eye on our hemoglobin levels.
So in your case what possible causes should be investigated first. You (as well as the rest of us) should take a critical look at your basic human requirements -- rest, diet and exercise. Lifestyle changes can be remarkably effective! Secondly, if you are male and haven't had your testosterone level checked that should also be done as part of an initial evaluation of fatigue. Thirdly, is there any chance anxiety or depression may be contributing? Fourthly, did the fatigue develop shortly after your partner began a new medication? Finally, even non-HIV related causes should be considered -- such as low thyroid.
Hope this gives you some direction. Write back if your still having trouble.
Happy (and hopefully peppy) Holidays,
HIV anemia tiredness vs. exhaustion
Aug 30, 2002
Hello, Could you tell me the difference between HIV anemia tiredness and HIV anemia exhaustion? Thank-you....you're the best. You always make me smile.
Response from Dr. Frascino
Can I tell you the difference between being tired and being exhausted? Hmmmmm - is this a trick question? Well, let's see. There is an old proverb that might help: "Man who runs in front of car gets TIRED while man who runs behind car gets EXHAUSTED." Does that help?
OK, seriously, tiredness or exhaustion is just a measure of severity of fatigue. Anemia can be mild and cause only mild exercise intolerance or moderate, causing chronic tiredness, or more severe, leading to complete exhaustion. It can also cause lots of other symptoms as well, such as shortness of breath, paleness, headaches, decreased sex drive, and inability to concentrate. The important thing is to find out if your fatigue (tiredness or exhaustion) is related to anemia. If so, it's then equally important to determine what is the cause of the anemia. If it's HIV-related anemia of chronic disease or AZT-induced anemia, then the treatment of choice would be Procrit. Procrit stimulates the production of new red blood cells. More red blood cells mean more energy. It has a proven safety track record and has been shown in clinical trials to improve not only energy levels, but also quality of life.
Hope that helps.
Maybe you'll find that old proverb in a fortune cookie one of these days.
Jun 29, 2001
Dr Bob, I really like the way you answer questions. Your responses often make me laugh out loud. OK here's my question ... I feel tired but I'm not sure I'm fatigued enough to mention it to my doctor who is not like you at all. Sometimes I can't think as clearly or as quickly as I used too. I do get more easily winded on the rare occassions I exercise. My testosterone level is OK according to my Dr. He wouldn't tell me the exact number. Are there diferent types of fatigue for we positive folks or is it all the same? Where can I get a copy of that magazine you are on the cover of that everyone is commenting about? tired Poz-guy
Response from Dr. Frascino
Hey tired Poz-guy,
Thanks for your thanks and thanks for your question! Fatigue is a general term used to describe feelings of exhaustion, sleepiness, and/or lack of energy. It is not a disease, but rather a symptom. Fatigue can be multidimensional with physical, psychological, and emotional components.
Physical fatigue is muscle weakness and is associated with activity. Think of Barbara Hershey in the movie, Beaches (with Bette Midler). Poor Barbara had that heart condition and just kept getting weaker and weaker. Physical fatigue is most often related to a specific physical malfunction affecting a body organ or system, such as the heart, lungs, endocrine system, or nervous system. You can also think of Strom Thurmond in The Senate. He has all of the above! Emotional fatigue involves a decrease in motivation and a lack of interest in usual pleasurable activities. This is also called "anhedonia." It can be associated with feelings of frustration and irritability. Examples of lack of interest in pleasurable activities: Think Republicans. For frustration and irritability: Think Jesse Helms.
Psychological fatigue is associated with difficulty concentrating, calculating, or remembering things. These symptoms can be easily confused with the early stages of HIV dementia. Examples of difficulty concentrating, calculating and remembering: Think of Dubya. (He's replaced Clinton's "Don't ask, don't tell" with "Can't speak, can't spell.")
OK, so are you fatigued enough to discuss it with your doctor? Absolutely. You should be able to discuss anything with him/her. Sounds like you've got components of physical and psychological fatigue (getting winded with exercise and having difficulty concentrating). Since you still laugh at my jokes, you probably don't have a significant emotional component. Your testosterone level is "OK," so what could it be? First of all, what's this about your Dr. not telling you your exact numbers? They are your numbers! It's your health. You can demand to see your chart and should keep your own file of your lab results! But let's assume your testosterone is "OK" for now. Other possibilities could include anemia. Anemia can cause physical, emotional, and psychological fatigue. The first symptom is usually exercise intolerance. So, check your hemoglobin level. Demand to see the lab value. The normal range for men is 14-18 gm/dL. Check some older lab slips as well, and see if your hemoglobin has been drifting down.
Other possibilities include depression/anxiety; hormonal imbalances (adrenal hormones, thyroid, testosterone); inadequate diet; inadequate or poor-quality sleep; lack of physical exercise; medication side effects; or an unrecognized infection.
So why are you only exercising on rare occasions? Time to turn the computer off, put on those trendy running shoes, and hit the gym. Even if you have to start very slowly, get some exercise every day. Then, increase as your tolerance and stamina improve. If you have exercise intolerance, remember to check that hemoglobin level, because anemia would be the most common cause.
As for that magazine article, it's Lifetimes2 published by CVS Procare. At least the photography in the article is a bit better than the funny little photo of me on this web site. I look like a cross between a munchkin and a Shar Pei!
So, Poz-guy, write back and let me know if your fatigue is still a problem after getting evaluated for the things I mentioned above. And don't forget: The gym is waiting for you and check your hemoglobin level!
Hopefully, when you write back you'll be "tired-no-more Poz-guy gym bunny." Good luck.
Sep 27, 2001
HIV+ since 89. Have done every drug combo possible. Have been off hiv drugs for one year because of resistance and lipodystrophy. Tcell at 300 and vl 20m. Have always been tired since azt but now exhuastion is overwhelming. Several times a day I just have to lay down and sleep. No anemia. am taking prozac. everytime i mention this to my doctor they say i am depressed. they have been telling me this for 7 years. is there anything i should try
Response from Dr. Frascino
There are many causes of HIV-related fatigue, and often more than one cause may be contributing. Fatigue can be caused by inappropriate attention to basic human requirements such as rest, sleep, diet, and exercise. Anxiety, stress, and depression are frequently associated with fatigue. Opportunistic infections can present with fatigue prior to other symptoms. Hormonal imbalances are another common cause. Filling out the list would be medication side effects and anemia. So what should you do? Check out these common causes first. Some you can evaluate yourself; others will require your doctor's help to order blood tests and examine you for signs and symptoms.
1. Rest, sleep, diet exercise. Getting adequate amounts of sleep and exercise, and eating a well-balanced diet can be difficult whether someone is HIV-positive or not. It's often a contributing factor to HIV-related fatigue syndromes. If you have access to an HIV-knowledgeable nutritionist, an evaluation of your diet and activity level could be quite beneficial.
2. Psychological causes - anxiety, stress, and depression Virtually all of us living with HIV have periods of feeling upset, worried, anxious, and/or depressed. These conditions are frequently associated with fatigue. The recent tragedies associated with the terrorists' attack have resulted in anxiety and depression for many Americans. Fatigue associated with these conditions is well recognized and being discussed on the nightly news. You are on Prozac. Perhaps your dose needs to be adjusted or a different medication tried. Counseling might also be very worthwhile to address any psychological component to your overwhelming fatigue. 3. Infections Many infections associated with HIV disease - viral, bacterial, parasitic, and fungal - can be associated with fatigue. Do you have any related symptoms - cough, fever, headache, diarrhea, etc.? You need a thorough evaluation for possible opportunistic infections.
4. Endocrine abnormalities If you are male, you should be evaluated for hypogonadism (low testosterone), a very common and easily treated condition often associated with significant fatigue. Other hormonal imbalances related to fatigue include adrenal insufficiency and low thyroid hormone production. These conditions can be diagnosed with simple blood tests.
5. Medication side effects You mention that you are not on antiretrovirals at this moment. What about other medications? Prozac can be associated with fatigue. Allergy medications contain antihistamines, which are also a common cause. Check all your medications, prescription and over-the-counter drugs and supplements, for possible drug side effects.
6. Anemia You mention that you are not anemic. Good! Keep an eye on your hemoglobin with every blood draw as this is a very common and often overlooked and under treated problem.
Finally, are you seeing an HIV/AIDS specialist? You've been off meds for a year with a very high viral load. Have you had a recent resistance test performed? Taking a break off meds when you've developed resistance to many of them may allow your virus to revert back to "wild type," thereby reinstating some sensitivity to drugs that you may have been resistant to in the past. There are also new drugs soon to be approved that are available via expanded access programs or clinical trials, such as Tenofovir and T-20, which might work quite well for you. You might want to collect up all your recent data and present your case to our Treatment Forum for their comments and recommendations. I think there is a very strong possibility that you could be feeling significantly better in the near future. You most likely have options for effective treatment of your HIV disease as well as your HIV-related fatigue . Discuss them with your HIV specialist soon.
Best of luck.
Loss of Energy & vitality
Jan 11, 2003
I love the site...it is really a powerful infomative site...thanks, I have Lack of energy and lack of vitality are my concerns and in most cases suffer from fatigue...espcially in the morning when I wake up. It's horrible...or do the anti retroviral cause that...I have started going to the gym with the hope to improve the situation. WHAT ARE THE SUPPLEMENTS which I can take to help me improve my situation.
PLEASE NOTE ALSO: I am currently on Fortovase & Novir (started the treatment 2 weeks ago). Previously was on 3TC,Viramune,Zerit and stop because first and second test increased, first one VIRAL LOAD was 50 000 and next one 1350000 and my doctor suggested a resitence...CD4 dropped from 600-460-390. I am staying in South Africa, THE supplements should be available in South Africa as I have notice some are not.
Kindly assist , I will be happy to have the vitality and energy boost...AS MY WORK REQUIRES ME TO BE ACTIVE AT THE OFFICE ALL DAY!!!!
Response from Dr. Frascino
As I read your question, guess what was playing on the radio? Joni Mitchell singing "Don't it always seem to go, you don't know what you've got 'till it's gone?" Boy did that strike home! Did you know that being tired as hell is the most common symptom those of us living with HIV (shall we call ourselves "virally enhanced?") have to cope with? Often, the exact cause of our "blahs" is difficult to sort out, because multiple causes are often contributing simultaneously. Physicians, even HIV specialists, often are too focused on our CD4 cell counts, viral loads, resistance tests, and battling with our insurance companies for payment, to focus on tracking down all the potential causes of our fatigue. That's where this web site can come in quite handy. Rather than reaching for a supplement to pep you up, it's much more important to search for the cause(s) of the problem. So let's start there.
Even though there are many potential causes, I suggest focusing on the most common offenders first. I'll review these top "fatiguers" in this post. If these don't turn out to be your problem, write back and I'll discuss some of the other causes that can be trickier to diagnose, OK?
First off, check for anemia. About 25% of us have anemia as our primary "energy-buster!" Anemia means your red blood cells or hemoglobin (the protein in red blood cells that carries oxygen from the lungs to the body) are low. Symptoms of anemia include fatigue, shortness of breath, rapid heartbeat, headache, difficulty concentrating, and decreased libido, among others. Anemia can be caused by a variety of conditions from HIV itself (anemia of chronic disease) to nutritional deficiencies (B-12, folic acid, or iron) to opportunistic infections (MAC, TB, parvovirus) to medication side effects (AZT, etc.). The diagnosis is made with a simple blood test - a CBC (complete blood count). The hemoglobin level is part of this test. If you are below the normal range of 14-18 g/dL for men (12-16 g/dL for women), you are anemic! POZ-folks should check their CBC every 3-6 months! Treatment depends on the cause. For instance, if you're iron-deficient, then iron supplements would help. If you have anemia of chronic disease (HIV-induced), then Procrit works like a charm. It ups red blood cells with a simple once-a-week self-administered injection given just under the skin.
Second, psychological factors. Many clinical studies have shown we "virally enhanced" folks are more than twice as likely to be depressed and stressed out as neggies! I bet that comes as a big surprise, right? NOT!! All of us go through periods of feeling upset, worried, anxious, or depressed. Depression and other psychological factors can zap our energy, appetite, sex drive, ability to concentrate, as well as disturb our sleep. What causes depression? Well, lots of folks like to blame their parents or their genetics, but scientifically, depression and related symptoms are often caused by low levels of certain crucial brain chemicals. Depression can be diagnosed by an HIV-savvy doc or a psychologist/psychiatrist. It can be treated with a wide range of antidepressants or psychotherapy (counseling). By the way, beware of herbal remedies containing St. John's Wort, because they can interact with protease inhibitors!
Third, hormonal factors, including low output of thyroid hormone, adrenal insufficiency, -- and by far the most common, low testosterone. Hormones are potent chemical messengers produced by certain glands that travel through the blood stream to control many bodily functions - growth, sex drive, energy level, etc. No doubt if our hormones are out of whack, we'll feel wacky! Hypogonadism (low testosterone) is incredibly common in HIVers and can occur in both men and women! Symptoms of low testosterone include fatigue, decreased appetite, weight loss, decreased muscle mass, and decreased libido. Statistics show that between 25 and 45 percent of male HIVers have low testosterone. The diagnosis is made with a simple blood test. Normal testosterone for guys is in the range of 300-1100 nanograms per deciliter. (If you're Italian like me, multiply by a factor of 10 . . . . kidding). Gals should be in the 50-100-nanogram range. Treatment is quite simple with topical gel replacement (AndroGel) or a transdermal patch or cream.
Other common fatigue-inducers - medications! One study actually found more fatigue in treated HIVers than untreated! But don't stop your meds. Search for all potential causes of fatigue and treat as many as you can. Opportunistic infections, liver problems, substance abuse, inadequate rest, sleep, exercise and/or nutrition must all be considered. You mentioned you are most tired in the morning. Are you getting adequate rest at night! Do your meds have you running to the john several times a night?
As for your specific question about "supplements," I'd recommend checking out the above possibilities first. Also check www.aidsnutritoin.org and/or Mary Romeyn MD's book "Nutrition and HIV."
Keep up those gym workouts. If nothing else, you'll look better naked!
Let me know if you have additional questions or if the above doesn't put the zip back into your "zippity do dah."
I need more energy
Aug 5, 2003
Hello Dr Bob I was diagnosed 2.5 years ago and was chronically fatigued. Have been chronically fatigued ever since and Doc has done all the tests under the sun and I am not anaemic etc etc. On the couple of drug holidays I have had I tend feel a bit better so I think meds have something to do with the decrease of energy. I have been put on three different types of anti-depressants despite the fact I have insisted that I am fed up because I am tired and not tired because I am depressed but no-one listened. Anyway after ditching the three different anti-depressants I felt no different before during or after taking these meds.- yes I took them all for a period of at least 6 months. My question is - given that I have been tested for all the things you commonly discuss in this forum - and given the fact that I have ruled out depression can you please advise me on any supplements that will significantly enhance my energy level as I need to get back to work and at the mo I am asleep half the day and all night. By the way my cd4 is 300 and my vl is undetectable (finally) Thanks - and you do a great job and your good humor is much appreciated!!
TM San Francisco
Response from Dr. Frascino
OK, so you've been checked out for the usual stuff anemia, low testosterone, depression, hidden infections and your butt's still draggin'? Welcome to the wild world of HIV Mystery Fatigue. You mention you were chronically fatigued at the time you were diagnosed 2.5 years ago. Since that was obviously before you started any treatment, one possibility has to be HIV itself. After all, HIV is a virus, and like many, many viruses, it can cause fatigue. Just think of the flu, mumps, measles, and the common cold. The viruses responsible for these all cause us to feel wiped out. Right? Well, HIV can do the same thing. The only difference is that, unfortunately, unlike the other viruses, HIV doesn't go away. Some folks feel better once they are on treatment and the virus is brought under control. Others are not so lucky and may even feel worse on treatment, due to drug side effects. You indicate you felt a "bit" better during your drug holidays. So, your meds might be a contributing factor, although certainly not the only culprit. What about other causes? How's your liver (liver function tests), stress level, diet, exercise program, etc.? I wouldn't give up on searching for the causes of your fatigue, even if the first go around of tests didn't turn much up. When considering testosterone levels, for instance, did you check "free" testosterone (the active component), as well as total testosterone? When considering other hormonal problems, what about adrenal insufficiency or low production of thyroid hormone? Continue to work closely with your HIV specialist even consider getting a second opinion to evaluate this one problem. Since you live in San Francisco, there is considerable HIV expertise available to you. It would be nice if a supplement could really enhance energy. Unfortunately, most often, they don't. A good diet plus a multivitamin should provide the nutrients you need.
What about drugs? Ritalin, cylert, adderall, and Dexedrine are all stimulants that either contain amphetamines or act in a speed-like way on the central nervous system. They are potentially addictive and therefore not all that useful for "chronic fatigue." They can also interact with HIV meds (Norvir increases their blood level, for instance) and some can be hard on your liver (cylert). Provigil (modafinil) is sometimes tried. Unlike most pick-me-up pills, this one is not an amphetamine (speed). It's used primarily for the treatment of narcolepsy. A big concern with this product is that it is processed in your liver by the same enzymes used by many HIV meds, and therefore can lead to undesirable drug interactions. So what to do? Continue to search for the cause (or causes) of your fatigue, rather than a supplement or drug to cover up this ongoing symptom. Re-look at all those original test results and even consider a second opinion from another AIDS expert in your area. Even though you feel you have "ruled out" depression, this may still be part of the problem. Rather than antidepressants, consider some counseling to help you cope with feeling wiped out. Reevaluate all your HIV and non-HIV medications to look for side effects and drug interactions. Exercise, even if you feel too tired to lace up your Nikes. Review your diet with an HIV-knowledgeable nutritionist. If you're still having trouble, write back and I'll give you the address of my favorite coffee shop in S.F. Good luck.
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