A year and a half into this, and BOOM. Depression and hopelessness.

[Wero]

Please forgive me for the length of my post as this is the first time I've reached out and I've got so much on my mind.

I was diagnosed on July 25th, 2015.  My first labs indicated a viral load in the millions and tcell at 10.  I had wasted, my main symptom then sent me running to the Doctor.  I went from 160 lbs to 120 in a month.  My HIV doc said I had probably been infected and untreated for 10-12 years based on my numbers.  I previously lived in the big city, where I was quite the party person, and very social.  Knowing this would eventually get me in trouble, I did a geographical move, and moved to a very rural area, into a town of less than 10,000 people.  Now living a "cleaner" life, and having a good job that I enjoyed, and not being as promiscuous as I was in my younger years, the virus shows up.  I've never been one to bounce around, and this seemed like home to me until I got diagnosed.  Living in a small town is great, until something of this nature happens.  My doctor is almost 220 miles round trip, and I won't even get my labs done in this town for fear of someone finding out.  I've not been in a relationship for many, MANY years.  My closest family is 4+ hours away, and honestly I don't have many close friends here that I can confide in.  I work 60-70 hours a week, which doesn't help when it comes to getting rest and treating my body right, including eating right.  I love my job, but hate the number of hours I work.  I've tried to work this out with my employer, and the employer knows of my illness, but won't work with me.  It's a big company, and is pretty gay-friendly, but as a company, not necessarily in this area.  My doc tells me every time that I need to work less and give my body a chance to recover.  I've relayed that info to my employer, but my immediate boss is non-reactive (to everything).  Like I said, I love my job, but it's killing me.  But now I need my job more than ever, for the benefits, for the medication, for my life.  Living in a rural area does not offer many decent paying job opportunities, esp for someone living with HIV.  I'm scared, I'm mad, but most of all, I'm exhausted.  Depression has gotten horrible, but I'm not sure if the depression is causing the tiredness or the exhaustion is causing the depression.  The doc put me on Lexipro recently and that helped initially, but I'm worse than ever now. I've not had much experience with depression or anti-depressants, but I'm in a bad spot now.  I know it's not new to many people on here, so maybe I can get some good advice.  I feel like I want to give up, the job, the meds, life.  I've NEVER had suicidal thoughts, but lately, it seems like it would be the easiest thing.  All I keep hearing is "just take a pill, alot of people are HIV positive and live normal lives.  WTF?  How normal of a life can you live when you're body is fighting to live, and a pill is required to live.  I have to keep my job to keep my insurance to keep my meds.  But now the fatigue is affecting my job, and I hate that in itself.  I've ALWAYS been a #1 employee, and been passionate about my job, but not here lately.  I could never do anything to harm myself because I know it's not the right thing to Him.  I've never been a holy roller, but God's gotten me through a lot in life, but I'm even letting myself question my spiritual beliefs now.  I pray daily for Him to give me strength to get through the day, but I just struggle daily.  I went to the Dr today and he ran more labs for thyroid (again, with past history and currently being treated), testosterone, anemia, etc.  I know I need to get into some support group, but again, the closest one is over 100 miles away, and is on Monday evenings.  With my work schedule, it's impossible.  Living in a rural area, does not afford me the benefit of having others that understand, or that I can even share my status with.  My family and some close friends have suggested I move back closer to my family, but again, I need my job, and it's expensive to move, and I do like my HIV doc.  I just feel bad because I've always been strong and independent, and could mostly always handle my own feelings and emotions.  I absolutely hate this.  I feel as bad now as when I was diagnosed.  Dragging myself out of bed in the mornings and forcing myself to work is getting to be almost impossible and I fear that my will is going to break.  My doctor mentioned taking some time off of work.  I've got a call into the boss and HR about taking a short leave, but I know I need to make it beneficial, but all I want to do is sleep for a few days.  I'm a basket of emotions.  I want to cry, scream, and punch someone in the face, all within the same minute.  I NEVER had these issues before being diagnosed (except the fatigue which along with weight loss is what made me go to the Dr when I was diagnosed.)  My first and only regime is Triumeq.  I'm undetectable now, which I thought or assumed meant I would feel better.  My tcells have been at a constant 240-248 for the last 3 months.  The doctor says they probably won't increase much since I went so long untreated, and that I need to take a little time of work to let my body rest, and maybe that would affect the number some.  The last couple of mornings have been the hardest, and I'm just at a loss.  One part of my mind says keep fighting and another one says there's got to be an easier way.  I know the mind over matter thing, and the half full glass thing, but I can't seem to beat this.  I know there's someone else that's gone through this.  Help. Please. and Thanks.

[Ptrk3]

I'm sorry to hear of your predicament and that you are going through a rough patch, but do know and understand that it does get better.

My story is similar to yours.  I was diagnosed in hospital with pneumocystis pneumonia, a viral load of 110,000, and a cd4 count of 9.  I, too, had most likely been infected move than 10 years before diagnosis. 

Depression is like an ocean undertow, and does sneak up on you, but it does need to be addressed because, unaddressed, it can be as dangerous to you as the HIV.

My advice would be to have a longer discussion with your doctor to determine how to begin to treat your depression, fatigue, and how best to take some time off to build up your strength, self esteem, and psyche.

It's good that you have a (somewhat) understanding employer, so, perhaps, explore what options you have in terms of short-term disability and the like (it sounds like you have a very supportive doctor who will support you, since he has already suggested you take time off).

In any event, take a deep breath and look at all your options and make a plan with your medical provider and employer. 

Most of all, treat your depression.  Many of us on this forum have been where you are now and have managed to make things right.  Really, it does get better.

Please continue to use this forum as support for your ongoing recovery and do keep us informed of your progress.

My thoughts are with you as you work toward physical, emotional, and spiritual health.

[Sergio48]

I am so sorry to hear of your predicament.

I was diagnosed also in July 2015. I never knew I was infected until I woke up in a hospital with a viral load of millions and CD of 2. I was discharged after three weeks and lost 25kg of muscle mass. I was weak, unable to even climb stairs without pausing for the occasional rest. I used to be fit and muscled. From July  until December 2015, I went through psychological hell. Being a Personal Fitness Trainer by profession, I couldn't work. Lost basically most of my clients. With no family, no work and debts to pay, I suffered severe anxiety attacks.

And then I started to walk on a daily basis. My leg muscles and soles of my feet burnt with pain, but I persisted. I started with 1 km, then 5km and eventually 30 km per week. A year and a half later, I jog, I gym and seldom fall ill. I had once bronchitis and I recovered pretty fast. I am now fully booked with clients, work from 5am to 8pm, exercising most of the time.

I take Zytomil antidepressant to help me with depression and anxiety.

I feel healthy and often forget that I have this virus in me but, never forget to take my meds.

Basically what I am telling you is, YES! IT DOES GET BETTER, believe me. And I believe that aerobic exercises helped me a lot.

There are many of us in this forum that can guide you. I can confirm that a bit of exercise will do wonders for your immune system and mental health.

I have decided to live a hermit life with my cats. I am happy. I made peace with my situation.

I wish you all the best. Be strong. Exercise. It does get better! If you need any advice on exercises you are welcome to contact me.

Go well!

[Wero]

I appreciate y'alls replies.  I'm taking a two week leave, effective immediately.  Hopefully during that time, I can get a non-medicinal regime started.  I did go to one psychiatrist, but I'm going to try to find one I'm compatible with...the one I saw sat there and looked at me, and collected payment.  Some was my fault I'm sure because I wasn't comfortable enough to share my total feelings.  I've never had to admit I've had feelings that death would be an alternative, and I don't want people to think I'm crazy...I'm really not, I've just had crazy thoughts recently.  I'm hoping during my time off, I can get to a good psychiatrist and make the support group.  Even though it's over 100 miles, I think it would be worth it.  I do realize now that it's time to put my life and health as a priority above work.  There's got to be a balance.  Hopefully my labs I had done yesterday will be back by Thursday.  I never thought I would hope that something would came back "off", but it would be a starting place to feel better.  I've heard many people comment on testosterone and vitamin/nutritional deficiencies, so I'm hoping there's an easy answer like that.  I know I'll have to work on me, the psychological part, but maybe there's an actual physical problem  I keep reading about exercise, too.  I've got an elliptical trainer and weight system in my bedroom, that I used to use before....yes, it's sat here unused and looks like I'm going to force myself to use it.  I used to walk 3-4 miles a day, 3 or 4 nights a week a few years ago, but I gave that up, too.  Again, I'm not sure if it's the illness or depression, but I pretty much quit living besides work.  I know, also, that I've got to get on a better nutritional regime.  Everything seems to boil down to time and energy.  I do feel somewhat refreshed today, yet still exhausted.  I've set a few goals, I've just got to be determined enough to get them done.  I'm just worn down. 

Again, thanks for your replies.  It's good to see people that were "here" and turned it around.  I know life gets better than this, and life is what we make it, but this disease is tiring....

[Ptrk3]

Excellent news that you have developed a plan!  That is the first step in rebuilding yourself.  Yes, set goals, but don't over exert yourself.  Take it easy and take one step at a time.

You may wish to ask your doctor to consider testing you for anemia and/or a Vitamin D deficiency and/or a testosterone deficiency, as potential other reasons for your fatigue (you seem to be thinking along this path), just to rule things out.

Continued best wishes to you and keep us all informed of your progress!

[Wero]

Funny you mentioned anemia.  Before I was diagnosed, when my pcp was searching for an answer to my fatigue and weight loss, B12 deficiency came up.  I got 2 shots, but saw no results.  She said possible absorbtion (?) problem.  I totally forgot about it (I was diagnosed positive immediately after B12 deficiency was discovered) until two days ago, the day before I went to my ID Doc.  So he's checking that.  Strange thing was, on some previous test, he showed me where the number would show him if he should check B12, and it was ok.  So I'll be interested to see the labs this time.  I'm actually praying there is something in the labs so we can move forward with fixing it.  I'll know depression is a big part of the fatigue, but I've never experienced issues like this before, so I'm just hoping there is a physical explanation, rather than being all psychological.  Either way, I'm just ready to fix it.  Tired of being tired.  Please tell me this is not a forever thing associated with the disease itself. 

Off topic, and I'm sorry, but is it unusual for my cd4 count to be a constant 240-250ish?  And could it be related to the fatigue?  I read other's numbers on here in the 800-900 range.  He said mine would probably never get that high since I went so long untreated?  Does this mean any different prognosis?  I don't want to be a pessimist, but I would like to know....Doc says "you've improved greatly" but that kind of does not answer my question. 

[Ptrk3]

I am not aware of a correlation of CD4's above 200 and fatigue, but there may be one of high viral load and fatigue.  Here's something to read about HIV and fatigue:

http://www.aidsmap.com/Tiredness-and-fatigue/page/1044668/

Fatigue could be the result of these reasons (or a combination of them), including depression and anxiety (which you have).  Fatigue can be a complicated matter, so work with your doctor to get to the root cause.

In regard to your CD4's, since it appears that you have been infected for a decade or more before diagnosis, your CD4's may rise slowly, but over time, they can continue to rise.  It's an individual thing, but it does appear that the longer one is infected the longer it often takes for the CD4's to rise.

However, it is not correct to conclude that your CD4's will never rise further from where they are now, perhaps not to 900.  You did not what your CD4 count was before infection, so 900 may never have been the case with you:  perhaps it was 500.  It's not simply the number of CD4's that matter, it's how well they work!  Some people with HIV and CD4's of 400 are never ill and some with CD4's of 500 are often ill, etc.).

The important thing right now is to attain and maintain an "undetectable" viral load in order that your CD4's have the opportunity to rise, and to keep the CD4's above 200.

This link may be useful to you in reading more about CD4's:

http://www.thebody.com/content/39433/faqs-about-cd4-t-cell-count.html

Click on the question and the answer can be viewed.

Best wishes to you as you continue your journey.

[Tonny2]

Funny you mentioned anemia.  Before I was diagnosed, when my pcp was searching for an answer to my fatigue and weight loss, B12 deficiency came up.  I got 2 shots, but saw no results.  She said possible absorbtion (?) problem.  I totally forgot about it (I was diagnosed positive immediately after B12 deficiency was discovered) until two days ago, the day before I went to my ID Doc.  So he's checking that.  Strange thing was, on some previous test, he showed me where the number would show him if he should check B12, and it was ok.  So I'll be interested to see the labs this time.  I'm actually praying there is something in the labs so we can move forward with fixing it.  I'll know depression is a big part of the fatigue, but I've never experienced issues like this before, so I'm just hoping there is a physical explanation, rather than being all psychological.  Either way, I'm just ready to fix it.  Tired of being tired.  Please tell me this is not a forever thing associated with the disease itself. 

Off topic, and I'm sorry, but is it unusual for my cd4 count to be a constant 240-250ish?  And could it be related to the fatigue?  I read other's numbers on here in the 800-900 range.  He said mine would probably never get that high since I went so long untreated?  Does this mean any different prognosis?  I don't want to be a pessimist, but I would like to know....Doc says "you've improved greatly" but that kind of does not answer my question.

        ojo       HELLO THERE...I Hven't read all the replies to your post, but i read, in parts, your story...i hope you find what's wrong with you on your latest labs, but, i think, you might be living with some depression, i wonder if you have tried a differrent one, i think you got lexapro...well, as a lts, i've gone through fatigue at one point after my dx, after my dx, my cd4=20 and lost around 35 pounds, but, after i left the hospital after suffering pcp, after three weeks of recovery in mexico, poor of me, i went back to work, i pusged myself to do it, those days meds were so toxic plus the antibiotics i was taking, made even worse, but i try harder...i hope you try harderit get's better, trust me...about your cd4 numbers, it will take a while before you see a good increase, in my case, i was always around 300s, i have been taking the same combo since 2007, were i, for the first time since my dx in nov. 94, i got ud, dince then, my cd4 hover the 300 as i mentioned, last previous results, my "soldiers" are 624 (last 2 blood works), so, eventualy, your numbers will increase like mine, but, concentrate in being ud and keep fighting, it's the only thing we can do, nobody said that having hiv was easy, but if you set your mind to fight it, you will live a happier life...wishing you the best, please, keep us posted...hugs                                                                                                                            ojo

[Beaner61]

I have been on B-12 supplements for the past 18 months with good results.  Not only did my energy levels rise, but after a couple of months I also noticed my spirits were better in the sense that I was more able to "cope" emotionally with stress.

One key point is that not every B-12 supplement in the vitamin section of your local grocers or pharmacy is the same.  You want to look at the ingredient list for one that lists "Methylcobalamin," as this methyl form of the vitamin is better absorbed.

I have found several brands of this vitamin at several local grocers and pharmacies -- it is not horribly expensive. 

I am not a medical professional, and am just offering my experience.  I hope you are donig better.

(I was also diagnosed in July 2015, as part of a "catch up on my tests" visit to my Dr.  I'm on Stribild, with good results.)

[Wero]

I do appreciate your input.  I had taken some time off work, and my second day off, my father passed on.  I'm going to try to get back on track.  We'll see.

Thanks again for your input.

[Ptrk3]

I'm sorry to hear of the loss of your father.  It's difficult to lose a loved one at anytime, but especially tough around the Holidays.  My thoughts are with you.

[Tonny2]

I do appreciate your input.  I had taken some time off work, and my second day off, my father passed on.  I'm going to try to get back on track.  We'll see.

Thanks again for your input.

         OJO       HI AGAIN...I'M SO SORRY FOR YOUR LOSS, AS JIM SAID, IT'S EVEN MORE DIFFICULT WHEN A LOVED ONE PASSES ON DURING THE HOLIDAYS, BUT THINK HOW YOUR FATHER WOULD LIKE YOU TO KEEP LIVING AFTER HIS DEATH, I'M DURE HE WANTS YOU TO KEEP  LIVING A HAPPY LIFE...AGAIN, SO SORRY, LIFE GOES ON...CYBER BEAR HUG ON YOUR WAY                                                              OJO

[Jim Allen]

Hi Wero

I am very sorry to hear that your father passed away and I am sorry for my late reply to this news. I wish you and your family strength during the difficult times ahead.

On the original topic posted before this update I am glad to see you are trying to work through this so you can move forward in your life. Mental health concerns are often challenging and I wish you all the best in treatment with the counselling.  As others have pointed out Fatigue can have a number of causes and also be a physical symptom of depression, if you are going to take any treatments for this do make sure to loop your HIV doctor in on the additional medication burden so they can check for any known side effects.   

Overall I wish you well, unfortunately for reasons outside of your control I will be locking this thread, that said I do hope you come back to us soon with an update on how you are doing in a new thread.

Wishing you well in the year ahead.

Jim

https://www.poz.com/basics/hiv-basics/hiv-depression