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Author Topic: Always tired...  (Read 5718 times)

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Offline SouthSam7

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Always tired...
« on: June 21, 2008, 12:50:39 AM »
I'm always tired.  I have been since I kicked meth, was diagnosed with hiv and started meds (all happened within a month of each other).  Because of that I don't know exactly what's making me tired.  I started taking testosterone shots around November, and it was awesome for about 4 months.  Now I feel absolutely the same as I did before.

I don't know if it's the meds or hiv or both, but even with the T shots my testosterone levels are below normal.

I'm starting Provigil next month and I pray it helps even a little.  I work full-time and want to keep working, but I am so tired after being up only a few hours.  I feel like shit every night when I go to bed and every morning when I wake up.  I walk up the 23 stairs to my bedroom and my legs are burning like crazy from fatigue.

Should I ask for Adderall instead of Provigil?  I know the subject of this topic is old but maybe someone out there has tried different things.  Please share any advice or experiences with fatigue and/or Provigil/Adderall.  Thanks!

Sam

Offline Robert

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Re: Always tired...
« Reply #1 on: June 21, 2008, 01:35:50 AM »
HI SAm

THere is so much that could be causing this constant fatigue. Like you said, it could be the HIV or the meds.  I've got thyroid problems (hyperthyroidism) and after taking some tests my Dr added to the dosage.  Also she checked the level of iron in my blood and it was noticably low so now I take an iron supplement.  I've no sex drive but my testosterone is normal. 

I take effexor for depression and that's it (other than my HAART and synthroid and iron pill.) But I still get so tired. By noon I've had it.  I'm on disabilty and thank gawd. There is no way I could work full time.

I guess I'm just telling you this to let you know you are not alone.  I don't know anything about Adderall or Provigil so I can't help you there. 

Oh yeah, and here is my latest complaint.  Now it's not only constant fatigue but HEADACHES too.  That's something new.  Never experienced headaches like this in my life but for the last 6 months they've been driving me nuts.  I told my Dr about these headaches at my last appointment and she pointed to the Effexor.  I see her next  in Aug.  I  think we just might drop the Effexor.  It's killing me.

Good luck.

robert
..........

Offline RapidRod

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Re: Always tired...
« Reply #2 on: June 21, 2008, 01:49:16 AM »
I take Ritalin 20 mg twice a day and it has help me to be able to work all day without being fatigued. I know my last dose for the day has to be taken around 4 pm or I won't get any sleep.

Offline BT65

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Re: Always tired...
« Reply #3 on: June 21, 2008, 08:50:25 AM »
Hi Sam,

So in one month's time you were diagnosed with HIV, started meds and kicked a meth habit?  That's a big change on your body.  How long has it been since this happened?  Recently or awhile? 

I can't comment on the Provigil, Adderal or anything else (I'm no doctor).  I would definitely discuss this with your doctor and see what he/she has to say.  If it's a real problem, then probably medical attention is warranted.  No one on here is a doctor, so you should probably discuss this with yours.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Peter Staley

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Re: Always tired...
« Reply #4 on: June 21, 2008, 09:22:33 AM »
Sam -- this can be a hard one to diagnose over the Web.  Work with your doctor on this, and do some research.

We've got a nice lesson on fatigue here at AIDSmeds:
http://www.aidsmeds.com/articles/Fatigue_7533.shtml

Peter Staley
Founder
AIDSmeds.com

Offline LordBerners

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Re: Always tired...
« Reply #5 on: June 21, 2008, 11:14:56 AM »
Given that your exhaustion began when you started meds, they are of course the obvious suspect.  However I think we are told that the reconstitution of immune response caused by the reduction in the virus (at least in the blood) makes us feel worse.
Please, just call me Berners.. or Baron.

Offline YaKaMein

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Re: Always tired...
« Reply #6 on: June 21, 2008, 11:20:22 AM »
Fatigue to me is more than feeling tired. It's that 'mind is willing but my body is zapped' experience. I hope you feel better soon.

Everyone's right it's hard to pinpoint a cause of fatigue. I'm pretty assertive with my physician and have a proactive partnership with him. My labs for thyroid function, testosterone and some typical things like ruling out diabetes, anemia, etc. were normal values. I don't have any depression.

For almost two years, I've had the same short list of complaints for my doctor; fatigue, diarrhea, low CD4s [ t-cells] and %. Possible influences for fatigue and diarrhea are HIV itself, HAART or both.  He also added .... Bactrim DS as a possible, repeat - possible with a small p, culprit for any or all of my complaints, but says it's unlikely and there's no hard research to support it.

Seems I'm one of the "lucky" ones who makes CD4s at a snail's pace (BUT-I'm very grateful my trend is consistently upward), Until I reached 200 t-cells, I wouldn't do much about the Bactrim since I NEVER want PCP again ... but I had a plan. I informed my doctor that I would decrease the Bactrim from daily to three[3] days weekly. Given my overall health, he didn't discourage it. Crossing 200, I stopped it altogether.

NOTE: This is entirely anecdotal but my fatigue is significantly better and diarrhea is far less. I am not a physician or advocating this for others. I am only reporting my experience.Ask your doctor about this. My next labs are in July so maybe it's helped me make more CD4. If not, I sure do feel tons more energetic. Has anyone else had this?
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline thunter34

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Re: Always tired...
« Reply #7 on: June 21, 2008, 11:55:58 AM »
I've had near constant struggle with this since diagnosis.  Of course, I went straight from diagnosis into meds so I have no way of knowing how much is the HIV and how much is the meds.  Most likely, some of both.  I got about 6 weeks reprieve from it when I started Reyataz instead of Kaletra.  My energy went through the roof.  I had no sooner raved about this to my doctor when the bottom dropped out and I went right back to wanting/needing/most often getting 12 hours sleep a day.  Either I get it outright or catch it in a nap.  I feel tired all the way down into my limbs and fingers.  I am most often ready to fall back asleep before I have even finished morning coffee.  My lids are heavy and my head droops.  I get little bursts of energy that last 20 or 30 minutes at a time then drop straight away.  I don't know how you folks are all coming by ritalin, adderall, etc.  I would love to have even just a half dose of something like that a day to feel normal again.  About the only thing the docs have been willing to give me is a shot of B-12 (which works wonders for about 30 minutes).  Most (read: negative) docs that I have encountered seem to think fatigue is largely in your head / a "just get a cup of coffee" situation.

The other day I had 3 cups of coffee AND one of those "5 Hour Energy" drinks.  I was asleep about 2 hours later.
AIDS isn't for sissies.

Offline RapidRod

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Re: Always tired...
« Reply #8 on: June 21, 2008, 01:28:52 PM »
thunter, mine was recommended by my GP and ID doctor. I know there are studies, that I've not read but I know it does work for me. Prescriptions have to be renew every month because of it being a narcotic. That's the only drawback.

Offline BT65

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Re: Always tired...
« Reply #9 on: June 21, 2008, 01:46:27 PM »
tPrescriptions have to be renew every month because of it being a narcotic. That's the only drawback.

Yes, with a picture ID.

Edited to add:  Sam, I don't know that simply "asking" for a script of Adderal will get you one.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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Re: Always tired...
« Reply #10 on: June 21, 2008, 02:03:59 PM »
Yep, Ritalin and Adderall are Schedule II drugs (for example, Klonopin is only a IV) so there are stricter rules and doctors are more careful about doling it out, just like a prescription for Oxycontin.

Also, most likely these are not on your ADAP formulary but I could be wrong.
"Iíve slept with enough men to know that Iím not gay"

Offline YaKaMein

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Re: Always tired...
« Reply #11 on: June 21, 2008, 02:17:27 PM »
Yeah, I hate that cautious condescension from some physicians. I hope your doctors  are willing to work with you and try something new. No one should have to suffer with fatigue.

Maybe it's like pain management. They think we're drug seeking since there's no objective way to measure fatigue.
Can't they see how we feel and move? It's not just in our heads, fatigue is real.

The upside for me was that it may have helped my SSDI claim which shocked the hell out of me took only two weeks in Jan. My doctor and medical records documented it; and the person who took my claim saw how wiped I felt.

Sending mega energy to everyone. YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline RapidRod

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Re: Always tired...
« Reply #12 on: June 21, 2008, 05:02:46 PM »
Yes, with a picture ID.

Edited to add:  Sam, I don't know that simply "asking" for a script of Adderal will get you one.

That is the advantage of going to a small pharmacy for years. They know you by your name. ;)

Offline rick21007

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Re: Always tired...
« Reply #13 on: June 22, 2008, 02:49:06 PM »
Drugs like Adderall and Ritalin are prescribed specifically to treat attention deficit disorder.  Unless you are diagnosed with ADD you would not be prescribed stimulants and probably the majority of MD's will not prescribe stimulants to people who have abused stimulants in the past, such as meth or cocaine, even if they are diagnosed with ADD.  (They bear close scrutiny by state medical boards when they do.)   An alternative pharmacological treatment for ADD is the anti-depressant buprion (Wellbutrin) but this works in a % of people and not all.

Meth is a CNS stimulant and typically when a person stops using the brain goes into a rebound mode which can typically last for a year or more.  You didn't say how long you've been clean.  This by itself could account for the fatigue and is not uncommon as is a slow down in metabolism.

That said since you were diagnosed with hiv and on meds there may not be a single cause of your fatigue.   You should consult with an MD and I would recommend looking at lifestyle changes that might be helpful.  And to reinterate what Robert said, I hope you are having regular labs done to see where your thyroid levels are and whether you are anemic.   No competent MD would consider prescribing without doing lab work to know what it is they are dealing with.

rick

Offline rick21007

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Re: Always tired...
« Reply #14 on: June 22, 2008, 02:57:32 PM »
One more thing that is often over looked because the fasting glucose tests are rarely done with regular labs is whether you could be borderline diabetic and your blood glucose levels run low.  If diabetes runs in your family would certainly be at higher risk.  Meth use takes a heavy physical toll on all of the body systems including the pancrease where insulin is produced.  MDs often fail to consider hypoglycemia unless they specifically test for it.  I can tell you for me when I have fatigue it is the culprit.  Since I have been taking Atripla and working out at noon I have had to change my diet to keep my blood sugar levels up.

rick

Offline BT65

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Re: Always tired...
« Reply #15 on: June 22, 2008, 03:00:10 PM »
probably the majority of MD's will not prescribe stimulants to people who have abused stimulants in the past, such as meth or cocaine, even if they are diagnosed with ADD.  (They bear close scrutiny by state medical boards when they do.)   
rick

Hmmm, I abused cocaine in the past and one of the last psychiatrists I saw was giving me large amounts of Dexedrine (dextroamphetamine).  I guess he must not have been in the majority.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline RapidRod

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Re: Always tired...
« Reply #16 on: June 22, 2008, 03:34:20 PM »
rick21007, stimulants such as Adderall and Ritalin are commonly used with patients with CFS caused by HIV/AIDS. The first I heard of it was from my GP, and then my ID doctor asked if I would like to try it because studies have shown it makes a great improvement in peoples lives that have CFS from HIV/AIDS. I guess it would be how proactive and research savvy your physicians are. I won't say it would work for everyone, but I know it has worked for me.

Offline rick21007

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Re: Always tired...
« Reply #17 on: June 22, 2008, 05:26:41 PM »
Bettytacy--I say good for your psychiatrist!  And yes he/she'd be in the minority which is too bad IMO.  Just my own experience the benefits of stimulants may actually keep people from relapsing on illicit drugs if for no other reason than to reduce impulsive behaviors.

Rapid Rod----the etiology of CFS is not well understood and there maybe more than one cause.  At least experimentally stimulants are tried as all treatment consists pretty much of treating symptoms.  It works for some people, yes to increase energy.  My question would be if there is an underlying ADD diagnosis which is often missed.  On the psychiatric side severe chronic fatigue is not unusual in people who have co-occuring ADD and depression and the use of stimulants in conjunction with anti-depressants is fairly common practice.  With folks that have a history of mania it is contraindicated.

BTW people with ADD are more at risk to contract HIV very simply because impulsivity is a symptom of the disorder.  It has been documented they are at higher risk for drug abuse and in adolescent girls much higher risk for teen pregnancy.  I would expect a higher % of poz's to have ADD than in the general population, though I doubt any actual study has been done.

Offline BT65

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Re: Always tired...
« Reply #18 on: June 22, 2008, 07:03:47 PM »
Oh, I don't see that psychiatrist any longer.  He was giving me twice the recommended dose of Dexedrine.  He also had me on a variety of other meds (benzos, sedatives, high doses of hormones, high doses of thyroid etc.).  He was just like a drug dealer and I'm sure still has many "buyers."
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline RapidRod

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Re: Always tired...
« Reply #19 on: June 22, 2008, 07:08:30 PM »
Rick, I don't have ADD or ADHD. I have AIDS. I have CFS as the result of HIV/AIDS which is very common with people that have been living long term with HIV/AIDS.

Offline Bucko

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Re: Always tired...
« Reply #20 on: June 22, 2008, 11:28:32 PM »
Hi Sam,

So in one month's time you were diagnosed with HIV, started meds and kicked a meth habit?  That's a big change on your body.  How long has it been since this happened?  Recently or awhile? 


I agree with my pal BT. Great going!

I was on Provigil several years ago when I was overmedicated for a spinal injury misdiagnosed as Myelopathy. Between the Fentanol and the high doses of Neurontin and Valium, I would set my self on fire with cigarettes  ;)

It worked beautifully, but eventually my insurance asked for a diagnosis of Narcolepsy (which I didn't have) and stopped paying. Evidentally it's prescribed off-label for all kinds of different things, but it's only approved for treating Narcolepsy.

Brent
(Who is glad he's stepped off all those meds)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline Peter Staley

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Re: Always tired...
« Reply #21 on: June 23, 2008, 09:39:26 AM »
Rick, I don't have ADD or ADHD. I have AIDS. I have CFS as the result of HIV/AIDS which is very common with people that have been living long term with HIV/AIDS.

Rod -- can you cite some studies confirming this?  I've got lots of friends who have been living with HIV for decades, and none of them have CFS.  I'm not saying it doesn't happen -- it obviously does.  But are we sure it's HIV-related, and that it is "very common"?

Offline dixieman

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Re: Always tired...
« Reply #22 on: June 23, 2008, 11:52:07 AM »
I'm checking with my doctor this thursday to see if I can be prescribed b-12 shots... I work 40 hours per week and then some and sometimes its all I can do to sling on an outfit and stare in space at my desk without falling asleep... the lack of energy has become more pronounced in the last few months. So whoever has suggestions spill it... thanks

Offline Miss Philicia

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Re: Always tired...
« Reply #23 on: June 23, 2008, 12:01:33 PM »
I'd also suggest getting checked for sleep apnea if your fatigue continues -- after exhausting other sources of course.  That's what was effecting me, and still does, though it was occurring simultaneously with low testosterone and depression issues  so I kind of hit the trifecta.  Out of my little "real life" support group I attend of a core group of 8 people, I think 3 of us have sleep apnea. 

I have no way of knowing if the incidence of sleep apnea is HIV-related or just something we all would have had regardless of HIV -- not everything is HIV-related obviously, and sleep apnea is an issue that's only received a lot of attention in the past 10 years.
"Iíve slept with enough men to know that Iím not gay"

Offline RapidRod

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Re: Always tired...
« Reply #24 on: June 23, 2008, 08:26:02 PM »
http://www.ncbi.nlm.nih.gov/pubmed/16443425
http://health.nytimes.com/health/guides/disease/chronic-fatigue-syndrome/medications.html
http://adam.about.com/reports/000007_6.htm


Psychostimulants. Psychostimulants may be helpful for a subgroup of patients with CFS who have cognitive problems such as difficulty concentrating, memory problems, and other attention deficit disorder (ADD)-like characteristics. Imbalances in neuroepinephrine and dopamine have been demonstrated in imaging studies of CFS patients, and are thought to be responsible for such symptoms. Although such imaging tests are not available to most patients, experts postulate that the benefit of psychostimulants offers proof that some CFS patients in fact have measurable chemical imbalances. It is not clear whether such imbalances may contribute to causing CFS, or whether the disease underlying CFS causes such changes in neurochemical structures in the brain.
Traditional psychostimulants have included Dexamphetamine, Adderal, Ritalin and Ritalin-like drugs such as Focalin, Concerta, Ritalin LA, and Metadate. Newer agents include Strattera and Provigil.

Treating Chronic Fatigue Syndrome
http://chronicfatigue.about.com/od/whatischronicfatigue/a/what_is_CFS.htm
Also being researched are psychostimulants (including Dexamphetamine, Adderal, Ritalin and Concerta, which may help with memory and concentration problems; D-ribose, which improves cellular function and may help with energy sleep, mental clarity and pain reduction; and antibiotics, which can help level out the immune system.
http://www.expert-reviews.com/doi/abs/10.1586/14737175.8.6.917

http://patient-research.elsevier.com/patientresearch/displayAbs?key=S000293430500656X&referrer=en.wikipedia.org%252Fwiki%252FME%252FCFS_treatments

http://www.chronicfatiguesupport.com/library/showarticle.cfm/ID/2926

Offline Miss Philicia

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Re: Always tired...
« Reply #25 on: June 23, 2008, 09:22:48 PM »
I missing something Rod?  None of your links mentions HIV.  Peter was (from what I can tell) asking about your claim of it being common in people with HIV.
"Iíve slept with enough men to know that Iím not gay"

Offline Iggy

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Re: Always tired...
« Reply #26 on: June 23, 2008, 09:28:25 PM »
Hi Sam,

So in one month's time you were diagnosed with HIV, started meds and kicked a meth habit?  That's a big change on your body.  How long has it been since this happened?  Recently or awhile? 

I can't comment on the Provigil, Adderal or anything else (I'm no doctor).  I would definitely discuss this with your doctor and see what he/she has to say.  If it's a real problem, then probably medical attention is warranted.  No one on here is a doctor, so you should probably discuss this with yours.

I agree with another's comments supporting Betty's statements here.  When I stopped Meth it took MONTHS for the IMMEADITE effects of the drug to leave my system.  After two years of sobriety, I still on occasion feel the desire to "spike up" my day with a hit

Add to that the effects of HIV (excuse me for not knowing if your testosterone has already been checked) but it cold be a combo.

Offline thunter34

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Re: Always tired...
« Reply #27 on: June 23, 2008, 09:48:31 PM »
I'm honestly starting to feel at my wit's end with this.  I'm feeling very down about it, really.  I had about a month where I felt like I was getting a new lease on life when I started the new meds.  It's frustrating because it's something you can't "see" on me most times.  I look "ok".  And I already know from experience it will be dismissed as aging or whatever - and I know it's more than that.  And I also know the best I can hope to get is maybe a B-12 shot the day of the doc's appointment.  My doc and I are distancing all around - just in general.  He's taken a major turn in the last year where he seems more and more like Phil Pharma, mouthpiece for the meds.  He's increasingly convinced that HIV meds of today are absolutely unfailing and any complaint of sides is either in one's head or attributable to something else (age, diet, whatever).  He's said repeatedly lately, "The meds don't fail - people do".

Apologies for the rant, but I just woke up from yet another nap a little bit ago to walk the dog.  It "woke me up", but I still feel tired in the limbs and even in my face (if that makes sense).  I'm so totally bummed about it right now.
AIDS isn't for sissies.

Offline RapidRod

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Re: Always tired...
« Reply #28 on: June 23, 2008, 10:28:24 PM »
Iggy, my testrone levels are normal, though I take testim 1% 50 mg daily to keep them that way.

thunter if you had read through some of the articles I believe you would find that people with immune diseases is thought as one of the reasons for CFS. CFS causes is unknown and there are guidelines that they use to diagnose CFS since there are no tests to diagnose CFS.

Is there a way you can get another ID doctor? It's not worth putting up with a doctor that you don't seem to be eye to eye with. I can't even imagine any of my ID docs saying to me what he said to you. I believe you have good reason to be upset.

Offline Iggy

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Re: Always tired...
« Reply #29 on: June 23, 2008, 10:52:18 PM »
Iggy, my testrone levels are normal, though I take testim 1% 50 mg daily to keep them that way.

That's what I am on, though my testosterone levels were just below normal when I started.  I am thrilled with the results energy wise, and I do believe Jeromy has appreciated the side effects of ...well...he has appreciated certain side effects

Offline RapidRod

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Re: Always tired...
« Reply #30 on: June 23, 2008, 11:01:51 PM »
 :D I bet he does Iggy. LOL

Offline Iggy

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Re: Always tired...
« Reply #31 on: June 23, 2008, 11:04:40 PM »
:D I bet he does Iggy. LOL

And you know who is sound asleep right now and leaving me nothing but the interent to deal with, right?
« Last Edit: June 24, 2008, 08:15:46 AM by Iggy »

Offline SouthSam7

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Re: Always tired...
« Reply #32 on: June 24, 2008, 02:30:55 AM »
Gosh, everybody!  I am so humbled and honored you would all be so helpful.  I'm very grateful to you.  Peter, nice to see your friendly face again!

Thunder, you hit the head of the nail when you said
I get little bursts of energy that last 20 or 30 minutes at a time then drop straight away. 
-that's exactly how I feel.  I work full-time and have a long commute, so the complete and sudden exhaustion is not convenient.

Robert, you and I may be separated at birth, our symptoms seem to be the same.


So in one month's time you were diagnosed with HIV, started meds and kicked a meth habit?  That's a big change on your body.  How long has it been since this happened?  Recently or awhile? 

I can't comment on the Provigil, Adderal or anything else (I'm no doctor).  I would definitely discuss this with your doctor and see what he/she has to say.  If it's a real problem, then probably medical attention is warranted.  No one on here is a doctor, so you should probably discuss this with yours.
Thanks, Betty.  I was dianosed in nov 05, had bad numbers, so tried the NA 12 step program again for the meth.  This time it took.  I began meds approximately same time (december 05).
When I went off the meth I lost all my energy, but I thought it would return.  It didn't.

I will talk to my doctor, though. 

I wonder if some meds have less fatigue than others?

I met a friend last week who told me "Provigil saved my life".  He had extreme fatigue and now he has generally normal energy levels.

Iggy, I totally relate to the "meth would fix this fatigue" thing.  It really would, but it might not be worth it.

My cd4s, like YaKaMeins, are slow to go up.

My testosterone, Iggy, is low, but I get shots every month.  It helped for several months but not anymore.  My levels by the way are still low.  I hear good things about Testim.  Anyone else have experience with Testim?

Love you all!  I feel very blessed.  Thanks, so much!  I won't give up and I'll check with my doctor and keep trying.

Sam

Offline trellium

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Re: Always tired...
« Reply #33 on: June 24, 2008, 04:10:30 AM »
My testosterone, Iggy, is low, but I get shots every month.  It helped for several months but not anymore.  My levels by the way are still low.  I hear good things about Testim.  Anyone else have experience with Testim?

Love you all!  I feel very blessed.  Thanks, so much!  I won't give up and I'll check with my doctor and keep trying.

Sam

Most doctors will usually adjust the dosage according to the patient's lab results after the first few months of starting TRT.
It is easier to make adjustment to the dosage since you are on the shots instead of the patch or gel.
If your lab results still show Free-Testosterone level below normal when tested on the day right before you receive the next shot, your doc can either adjust (increase) dosage and/or injection frequency to bring it up within the normal range. 
 
If you are getting testosterone cypionate or enanthate shots, those esters don't last more than 2 weeks in the body (personally they only lasted ~ 10 days for me).  Perhaps you can get doc to review the dosage and give you the shots every 2 weeks (a month is way too long a stretch IMO), or prescribe the new long-acting Nebido shot which can last 3 months when it is US FDA approved.  Using the gel or patch will be the most convenient unless you do not mind frequent visits to the clinic, or giving the shots to yourself like I do.

Offline David_CA

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Re: Always tired...
« Reply #34 on: June 24, 2008, 08:28:26 AM »
I know I've said it before (along with a few others), but Adderall is a life saver for me.  I take it for ADHD.  I started with Ritalin and extended release Ritalin around 15 years ago.  About 8 or so years ago I switched to Adderall.  I take 'standard' Adderall; there is a time release version.  The time release might work better, but I don't believe it's available in generic yet, though I may be mistaken.  It does help with ADHD a lot, makes me feel good in general, and gives me some energy.  The generic is labeled 'Amphetamine Salts', so it should come as no surprise that it has these effects; it is speed, after all!  I'm sure that obtaining it can be difficult, but it's not impossible.  I have two friends that have been prescribed Adderall in the last few years.  I think a lot of it depends on the Dr; some have reputations for having a 'loose pen' when it comes to prescribing it, and it may take some shopping around. 

I know some think it's not good to take meds unnecessarily, etc.  I disagree about this when it comes to Adderall and CFS or ADHD.  People are prescribed all sorts of meds to fight depression (which Adderall does, too), pain, anxiety, etc.  How is having a functioning level of energy any different?  Besides, when one considers all the other meds we take, Adderall is a drop in the bucket.

Another benefit / side effect, at least for me and a couple other forum members, is that it helps with the dopiness brought on by Sustiva.  I pop an Atripla, Adderall, and Lisinopril (for hypertension) first thing every morning.  I still feel a bit funky from the Sustiva in the Atripla, but it's not at all unpleasant or too intense when taken with Adderall.  I look at it like this:  Adderall & Ritalin are to CFS / ADHD what HAART is to HIV (in my experiences).

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 thunter34

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Re: Always tired...
« Reply #35 on: June 24, 2008, 08:37:48 AM »
And not having energy is making me depressed!  Seriously.  Especially after having had energy again for a few weeks.  I don't expect to be as "through the roof" as I was for the first two weeks or so of the energy burst - just somewhere in the middle.  Plain old "regular" would be fantastic.  I think I posted above that I took a nap yesterday evening for about 2 hours.  I was back asleep for the night about 3 1/2 hours later.  I just got up a bit ago and am having coffee.  At the moment I feel fine, but if the typical pattern continues I will probably be sleepy again by about noon today. 
AIDS isn't for sissies.

Offline Peter Staley

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Re: Always tired...
« Reply #36 on: June 24, 2008, 05:29:12 PM »
I'm honestly starting to feel at my wit's end with this.  I'm feeling very down about it, really.  I had about a month where I felt like I was getting a new lease on life when I started the new meds.  It's frustrating because it's something you can't "see" on me most times.  I look "ok".  And I already know from experience it will be dismissed as aging or whatever - and I know it's more than that.  And I also know the best I can hope to get is maybe a B-12 shot the day of the doc's appointment.  My doc and I are distancing all around - just in general.  He's taken a major turn in the last year where he seems more and more like Phil Pharma, mouthpiece for the meds.  He's increasingly convinced that HIV meds of today are absolutely unfailing and any complaint of sides is either in one's head or attributable to something else (age, diet, whatever).  He's said repeatedly lately, "The meds don't fail - people do".

Apologies for the rant, but I just woke up from yet another nap a little bit ago to walk the dog.  It "woke me up", but I still feel tired in the limbs and even in my face (if that makes sense).  I'm so totally bummed about it right now.

Tim -- no need for the apology.  Sometimes I think the best thing these forums offer is a place to rant.  You sound really down about this, and I'm sorry you're going through this level of stress.  It sounds to me like your doctor isn't very supportive here -- correct me if I'm wrong.  You deserve a doc that takes this seriously, and is willing to try a few things to find a solution.  Might you be able to find a second opinion, or try another doc?

You shouldn't have to live like this.

Peter

Offline SouthSam7

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Re: Always tired...
« Reply #37 on: June 28, 2008, 01:08:26 AM »
P.S.  I've had my thyroid, fasting glucose, creatinene, anemia and all that tested.

I haven't used meth in almost three years (this november/december 08).

I understand people abuse things but that makes it harder for me to get treated.

I feel if I could just get over that four o'clockish "hump" everyday, I would be able to stay awake for normal hours.

It's hard to find a doctor who is progressive enough to help me with fatigue.  I've tried everything else.  I am trying provigil right now but I don't feel any different : (

Peace,

Sam

Offline rick21007

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Re: Always tired...
« Reply #38 on: June 28, 2008, 03:34:07 PM »
Sam--have you thought of checking out a naturopathic physician?  They can figure out things the regular MD's cannot.  In 2006 when I had hep B so bad it took a naturopath to get me back on my feet (and back to work).   And another thought:  Years ago  I had a trainer suggest I eat fruit during the day to keep my energy level up.  Since I started the Atripla I have been experiencing an afternoon slump myself and eating an apple (apples work better than any other fruit for me) gives me the boost that I need.

rick

Offline rick21007

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Re: Always tired...
« Reply #39 on: June 28, 2008, 03:46:27 PM »
I know I've said it before (along with a few others), but Adderall is a life saver for me.  I take it for ADHD. 

David-- I can't tell you how many men with previously undiagnosed/untreated ADD have a born-again experience taking Adderall.   It pisses me off to see prescribers deny this to guys who had self-medicated with meth BTW.  I am working with a guy right now who is in jail on a 30 day sanction for relapsing on meth when it could have been _prevented_ had he been on Adderall in my opinion.  There are a million assholes running around that would not be assholes were it for the right chemicals in their brains.  And the even better news is that Adderall seems to help the brain heal itself.   I used to work with a prescriber who had ADD herself and she taught me a lot.  Now I am stuck with a psychiatrist whose only concern is to avoid scrutiny by the state medical board. ( I run a jail diversion program BTW and being ADD is the rule with these guys rather than the exception.)

rick
« Last Edit: June 28, 2008, 03:49:13 PM by rick21007 »

Offline SouthSam7

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Re: Always tired...
« Reply #40 on: June 28, 2008, 03:51:51 PM »
thanks, rick21007.  I'll try to do better (seriously).  I don't eat great all the time; I know that could help.

I slept in until 10:30 this morning (shameful!) and it felt delicious.  I definately feel better right now (3:00 pm) because I got regular amount of sleep.  I feel at least 50% better.

I hope I don't get tired in a few hours.

I'll go eat an apple.  I have made a real effort to eat healthier, fresh foods (I just bought a pound of blueberries at the farmers market and they are really good).

I'll go work out.  Maybe that would help, too.

Sam

Offline Lorenzopier

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Re: Always tired...
« Reply #41 on: June 28, 2008, 04:02:05 PM »
Hello Sam,

Trying to diagnose the cause of tiredness and fatigue can be difficult due to the complicated nature of hiv itself as well as changes in metabolic pathways that can be caused by the meds.I agree with rick21007 about checking with a naturopathic physician.I have been able to get a lot of relief from fatigue and tiredness while using L-Carnitine at 1 gram each day.Co-q10 at 100 milligrams a day also gives me a noticeable boost in energy levels.

Offline SouthSam7

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Re: Always tired...
« Reply #42 on: June 28, 2008, 04:04:47 PM »
Thanks, Lorenzopier.  I just started L Cartinine and will go back on the co q 10.

I really appreciate all your help.

Sam

Offline BT65

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Re: Always tired...
« Reply #43 on: June 28, 2008, 08:49:22 PM »
Sam, I'm not trying to discourage your current regimen.  But I would just suggest that before you go adding a lot of other minerals etc. you check with your doctor about interactions with your current medications.  No one on here is a medical doctor.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline SouthSam7

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Re: Always tired...
« Reply #44 on: June 28, 2008, 10:42:08 PM »
Ok, Betty, I will.  I think my doc is tired of me for a while.  I passed out at work so she ordered all these tests (eeg, ct scan, ekg)

Well for each one I have to get orders and coordinate it with the hospital.  Of course both my doc and hospital are an hour away and i work in the opposite direction so you can imagine the frustration.  Half the time I go to my doc the door is locked and they've gone home for the day.

I won't go on but I feel my doc is not taking the fatigue seriously to say the least.

I promise I will bring it up again next week when I go to get my shot.

Thanks,

Sam

Offline rick21007

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Re: Always tired...
« Reply #45 on: June 29, 2008, 10:37:48 AM »
Reply--- Sam--I was fortunate to have my naturopathic doctor and ID working together.  They both had my labs and all meds and any supplements I was taking in their files.

Lifestyle changes can be as important as meds.  We live in a culture that looks for pharmaceutical solutions to lifestyle problems.  That said I would have to admit Atripla is a pharmaceutical solution to what was a life-style problem for me!  :-\    With your job and long commute sounds like you have long days.  You don't mention job stress which is huge for a lot of people including myself.  I work in a high stress environment and despite lifestyle changes I don't do jack on evenings or weekends most of the time myself.

rick

Offline rick21007

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Re: Always tired...
« Reply #46 on: June 29, 2008, 10:40:50 AM »
....except to spend time with my friend pictured here and her pasture mates. ;D   rick


Offline SouthSam7

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Re: Always tired...
« Reply #47 on: June 29, 2008, 12:47:40 PM »
Yes, Rick, my job is very stressful, especially recently.  It's not fun anymore.  I feel a change coming regarding that; I can't come home exhausted mentally and bitter at my new boss.  That hurts no one but me.

I should have included the stress part in my original post.

Thanks, all!

Sam

 


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