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increased pain, sleep deprivation, losing hope
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increased pain, sleep deprivation, losing hope

My first time on this site...finally, I found I'm not alone!  I am almost 2 years post treatment. I'm an athlete.  Four days before I started tx, I ran a marathon. I fell at mile 3, cracked a rib, and finished the race anyway - another 23 miles! So, I certainly am not a wimp when it comes to pain....I am a 50 year old female, and a retired Navy Chief. I had gone about halfway through treatment in 2003, but was too sick to continue.6 years ago I fell in love with an extrordinary, beautiful man, and we decided that with his help, I could finally complete treatment and live happily ever after, scuba diving, hiking, kayaking,making sculpture, and running marathons...we married, a first for us both, just over a year ago.
   I have spent the past 2 years becoming more and more depressed.  My pain, while  always present, suddenly escalated about 3 months ago, every joint, and in particular my right leg.  The ever-present insommnia has turned into night terrors, from which I wake screaming. Even Ambien will only keep me out at the most, 4 hours.  Hey, four hours is great, its usually 2-3, if I make it past the 1st hour.   Yesterday, and then again last night, I experienced my first sleep deprivation induced hallucination. My friends called EMS and took me to the hospital when I collapsed, where I was treated like a drug seeker. I left AMA.  I am terrified.  The depression, pain, mood swings, frustration and fear,  have nearly destroyed my marriage.  I cry every day. During the night terrors, I am always being killed, limbs torn off, etc. Suicidal ideation is now a daily event.  I just saw a dog in my living room, and I don't have a dog...sleep deprivation is no joke.
    I have struggled to continue working, in a very high stress position.  It takes ALL my energy to do this.  I am a medical professional,  I do nuclear stress testing for a cardiology group.  A mistake on my part can have a pretty catastrophic impact on my patients...I no longer have the necessary concentration to do my job, and am forced to give up my career.  (still paying student loans on the Nuc degree!)
  I am hoping, with the help of my husband, to find some relief from this nightmare.  I have not sought help for the after effects, other than to take an antidepressant and  medications for sleep. I did not want to admit, even to myself, that I AM GETTING WORSE! Is this arthritis, fibromyalgia, what? There are certain labels I never, ever wanted to carry, and "disabled" is one of them....however, I am now going to the VA and applying for this.  Also SS but haven't started any of this yet, because I'm a bit overwhelmed right now...
   I knew that there was a possibillity that I would always have pain, but never expected this.  I remain clear of the virus, thank God.  Would I do the tx again? I wanted so badly to grow old with my husband, that I was willing to endure anything to make that happen.  Wish we had researched this more thoroughly, and had trusted my instincts that this was a bad idea. It has destroyed my life.
  Thank you for helping me feel that I am not alone. Any suggestions would surely be welcome.  I have no idea where to begin.
22 Comments Post a Comment
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Avatar_f_tn
Hi,
I sent you a personal message but I am going to reply briefly on the forum as well. You are clearly in a crisis situation and I am wondering if you have been in touch with the Dr. who treated you for Hep. C and what the condition of your liver was when you finished treatment and now.
If you have not been in touch with them, please see a specialist (Hepatologist) as soon as possible.
My prayers are with you.
I am certain you will soon get some very helpful replies to your situation.
Hang in there and all the best to you.
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Avatar_f_tn
Hmmm, well, it's kind of weird, but I started getting many of the symptoms you are describing, a few months BEFORE my Tx, which I am still on.
   Like you, I have always been a super-athletic woman, and up until right before my Tx (started 4 months ago) I could still skate-board very well, although I am 49 yrs old! I also rode my bike for miles, everyday,  etc.
   But, I have been having trouble sleeping, fo rmore than 2~3 hrs at a time, for a few yrs now. Then, last January, my sternum/clavicle joint just popped out, and I can no longer stand up straight, with-out pain in that area, and there is a huge bump, where the S/C joint is. I also cant move my right arm very well now.
   So, three months into Tx, now, the joint where the top of my thigh connects to my hip, that joint has popped out also, and I have difficulty walking now!!
   I am wondering if all the Athletic Stunts I put myself thru, my whole life, are coming back to haunt me, in the form of Arthritis, now that I am approaching 50 yrs, and my estrogen has dropped (Menopause)
   One good thing: you DONT have Hep C anymore!!  If you still had it, you could have gotten liver cancer, or End Stage Liver Disease, a very sad, and painful death, that can last a few years, etc, where you would be going to the hospital to have your verices banded, if you survived, to get to the hospital, that is.
   In terms of Sleep Deprivation, I always try to lie down, horizontally, from 11 pm to 7 am, with no t.v.  or computer on, because the blue lightis said to keep people up.  I dont take any sleeping pills, and do manage to usaullay sleep, from about Midnight to 3 am.
   I caught my Hep C, from being addicted to Methamphetimine, years ago, and learned back then,  that as long as I did rest, horizontally, that got the three hours sleep, that I could still function at a minimal level.
    Also, antidepressants can also cause psychosis and mania.  You may want to try switching to a Mood Stabilizer, instead. You might have to experiment with a few, to get the right one, and there are many.
   Some people find sleep relief, by taking a 50 mg dose of Seroquel at night, but that is also a hard on the liver. Talk to a good Psychiatrist, you could try Abilify, etc~
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2188151_tn?1338146649
thank you.  I am so sorry to hear that you are having these problems, and I appreciate the advice and support.
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2188151_tn?1338146649
I have scheduled an appt with him next week. Because I was treated by the VA, I had to go to a large VA hospital that is 2 hours drive away for my treatment. My husband travels for his work, so I had to coordinate with his schedule, as I am not going to drive until this hallucination thing is resolved. I have been in complete denial about this whole mess, choosing instead to believe that "things will get better, if I can just wait it out".  Not a very smart approach, but I can be pretty stubborn sometimes.  Duh.
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446474_tn?1404424777
'The depression, pain, mood swings, frustration and fear,  have nearly destroyed my marriage.  I cry every day. During the night terrors, I am always being killed, limbs torn off, etc. Even Ambien will only keep me out at the most, 4 hours.  Hey, four hours is great, its usually 2-3, if I make it past the 1st hour. Insomnia. Suicidal ideation is now a daily event.'

Where to begin?
All your symptoms are symptoms are consistent with clinical depression. If you find the right doctor (Psychiatrist) and receive proper treatment chances are very good that you will be able to either reduce the symptoms or eliminate them.
Obviously the antidepressant you are taking is not working as your description of symptoms shows.

Have you told your doctor that has been prescribing your antidepressant of your symptoms? What do they say?
Haven't they told you these are all symptoms of major depression?
Being an athlete or anything else doesn't make your exempt from major depression many famous people of all walks of life have suffered with major depression.

Please seek help before you cause harm to yourself or others. Get a referral to see a Psychiatrist who is experienced in treating mood disorders, especially major depression.
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http://www.emedicinehealth.com/depression/page3_em.htm#Depression Symptoms

In true depressive illnesses, the symptoms last weeks, months, or sometimes years if you don't seek treatment. If you are depressed, you are often unable to perform daily activities. You may not care enough to get out of bed or get dressed, much less work, do errands, or socialize.

Adults: You may be said to be suffering from a major depressive episode if you have a depressed mood for at least two weeks and have at least five of the following clinical symptoms:

Feeling sad or blue
Crying spells
Loss of interest or pleasure in usual activities
Significant increase or decrease in appetite
Significant weight loss or weight gain
Change in sleep pattern: inability to sleep or excessive sleeping
Sleep disturbance is frequent. Usually the patient wakes up depressed at 4 or 5 in the morning and is unable to return to sleep.
Agitation or irritability
Fatigue or loss of energy
Loss of ability to laugh and experience joy in your daily life
A tendency to isolate from friends and family
Trouble concentrating
Feelings of worthlessness or excessive guilt
Unexplained physical complaints (for example, abdominal pain, changes in bowel habits, or muscle aches)
Thoughts of death or suicide
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You may want to post your question in the Medhelp "Depression Community" to communicate with other with similar symptoms.
http://www.medhelp.org/forums/Depression/show/57

Good luck to you.

Hector
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Avatar_f_tn
Your stoicism ("stubbornness" ) has served you well. You are amazing and a very strong woman to be going through this for two years.
I am glad you are being proactive and seeing this doc. If she or he doesn't take this seriously, hang in there and keep looking. Please keep us updated.
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Avatar_f_tn
What Hector is saying makes good sense. Whatever the cause this is a large part of your suffering and it does not cancel out your diagnosis of the problem. They are not necessarily exclusive, depression and liver disease. Get help on every front, where you need it.
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Avatar_f_tn
*mutually exclusive
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2188151_tn?1338146649
Clinical Depression...absolutely.  Something I have been aware of for years, since the first time I went through treatment.  You are absolutely right, and I thank you for your help.
  The doc who prescribed the effexor has no idea that I am this depressed.  I have been afflicted with "inertia" for some time now.  Also, have been having an incredible number of other (seemingly unrelated) health problems, in the last few months...everything from kidney stones to root canals. So I have not spoken to him recently about the effexor, specifically, about the fact that it's not working! Clearly I need to address this ASAP.  I am trying to come up with a prioritized list of how to proceed...finding a psychiatrist is now at the top.
   Thank you, this is great advice.  It seems as if there are so many things I need to do (see the GI doc, rheumatologist, sleep doc, pain management, etc, etc...
  
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Avatar_m_tn
Since you utilize the VA, ask your primary for a psychiatric referral.  The VA has cleaned up their act a great deal in the past few years and now has pretty qualified people on board.  I completely agree you need a psychiatrist and an excellent therapist  since they're the ones who can unravel your symptoms and figure out what is going on.   Besides, they are good at mixing and matching meds into a cocktail to resolve things. The other good thing is all of them are now getting training in PSTD, which a lot of your symptoms sound like.  You obviously also need a pain med specialist and having a sleep study done might be a good thing.  People who have severe apnea are well known for having night terrors because they literally are starving for air, and hallucinations due to all that "bad" sleep are not that uncommon.  Ambian is also considered a problem child--good for short time use, but uncertain about safety in long term.  Your sleep doctor would know the answer to that one.

But there is a lot of avenues you can explore and hopefully they all will help part of the problem.
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Hi sorry you are going through this.    You know ambian can cause hallucination . The fact you are taking that and not sleeping is a dangerious combo.  We and our DR sometimes blame the hep C for everything.  You need to go to the VA and have everything check out system by system. If it were me I would see the psych Doc frist and go from there. Head to toe assessment  
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Did you have your thyroid levels checked during, and after, treatment?  

Some here have had thyroid problems (exacerbated by tx) - symptoms of hypo=thyroid include insomnia, anxiety, exhaustion. depresssion, arthritic-type pain, incorrect oxygen/carbon-dioxide balance,  amongst others (I'm on medication for hypo now, and when my levels aren't normal, it is quite a psycho battle - no wonder people ended up in institutions when they weren't diagnosed correctly with thyroid problems).    If you haven't had your thyroid checked, please insist.

Also, ambien (known here as zopiclone), while a Godsend for insomnia, can have sides.  I have used it intermittantly, during tx, and after when my thyroid hormones weren't stable., but was warned about them.   I cut a 7.5 mg tablet into thirds or half - which gets me off to sleep just  as well as a whole tablet, and doesn't make me sleep any less (when I was hyper-thyroid - 4 hours was about the maximum).    If you use them over a long period, your body needs more for the same affect., and more can have you doing things you can't remember, and have psychological effects...  (i.e. I've used them since 2008, but have managed for many months without, and as once nurse said 'make sure you have nights without them when you can - cutting down, weaning and taking tylenol helps, but I couldn't be without them when my thyroid levels are whacked - like you I have a stressful busy job and my life has centred around me trying to keep it).   I have been open to leaving though, if it meant my sanity and well-being.  

I also had fibromyalgia type symptoms after tx - maybe related to thyroid, maybe not, but I was in intense pain for some 6 months, then it disappeared (also possibly related to thyroid).    

Don't give up on this, you've come too far and are obviously strong to have managed.   I'm starting to see the light now, and it's been a long haul;  I'd do tx again in a heartbeat - I'm just on another journey and I must admit, it was disappointing to not be the healthy person I was years ago, but I'm older, and wiser, and my liver is healthy, which is a really good start for getting the rest of my body sorted.    Best wishes with the tests.      
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190885_tn?1333029491
i think a lot of our nasty symptoms post tx could be from our diets...maybe you developed an allergy to something from tx...could be gluten...honey..hormones in plants or animals you eat....who knows...a friend of mine on the forum said even years post tx they still had to drink a lot of water to have good energy....good luck....billy
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163305_tn?1333672171
  "The doc who prescribed the effexor has no idea that I am this depressed. "

The only way the doctor can know is for you to tell him or her.
I suggest you write down all of your symptoms and side effects, whenever you think of them. Keep a pad of paper handy. Then take it  with you when you see the doctor.
It's easy to forget something when we're in the office and only have a limited amount of time.
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I am happy that you are able to realize what is happening to you and take action. That is the a big first critical step on the way to recovery. I think you will find that once you get your depression under control most of symptoms you are experiencing mentally and physically will disappear.

Try to have patience. I know it is difficult when we are suffering but trust that in time things will get better. Different people respond or don't responded to different antidepressants. Somethings it can take up to 6 weeks to feel the full affect of the drug. If a antidepressant doesn't work you will have to wait to clear out the drug before starting a new one. It took me many months to find a antidepressant that worked for me but it was all worth it. I felt sooooo much better.

I have experienced most of the symptoms you are now experiencing and I know it is very scary and makes you feel crazy. The feelings of hopelessness can be overwhelming at times. The nightmares and obsession with death is very dark and lonely place. But it all can be overcome. I haven't had those thoughts or feelings in over 10-15 years. I am a happy person despite the health challenges I am now facing (cancer) and I can look back on it as a learning experience.

There is always hope even though depression will make you feel and think life is hopeless. It is the disease that makes you feel and think that, not reality. The reality is the world is the same as it always was, it hasn't changed, what has changed is your perception of the world. What clinical depression does is it filters the world so you experience it in a painful (mental and physical) way. Like putting on someone else's glasses. Everything is distorted including your thoughts and feelings.

So you are taking that big first step. Admitting that it is beyond your control. That takes guts to do. We naturally think we should be able to handle anything that comes along. But it is not true. It is very difficult for many of us to reach out and say we need help. Even with hepatitis C many of us at first say I feel fine, why should I treat when I feel perfectly healthy? But needing and wanting help is not a sign of weakness, it is a sign of strength. That we are secure enough in yourself and care enough about ourselves to ask for help when life throws us a curve ball. It is doubly tough when people are depressed, because they tend to withdraw from life and isolate themselves. They feel weak and frightened. But try to look at it as you are taking care of yourself and it will help your relationship with your husband, your relationship with yourself and your relationship with the world.

Try to take it one step at a time. If you think about all of it it will be overwhelming. Get an appointment with a Psychiatrist, find someone who you like and who "gets" you. Then follow their advice. Try some antidepressants and see what happens. Hopefully the doc will find one that works for you soon. Then take the next step. Just keep pushing ahead despite any setbacks. Keep your eyes on the prize. Feeling good and like your old self again. It will be well worth all you need to go through to get your health and life back.

Best of luck to you!

Hector
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Avatar_f_tn
Ah, Hec, has anyone told you lately how awesome you can be?
Thanks for a very beautiful post. Smart, compassionate-you are da man!
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This is so sad. Bless your heart. You sound so utterly frustrated and unhappy. I would pursue the disability & SS and work on rebuilding your health and getting your life back. I would see a psychiatrist (or other behavioural health professional) you trust that you can be candid with.

Hopefully in time and with less pressure things will come together. Hang in there!
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So sorry for your problems. I find it interesting that the VA proscibed effexor to my brotherinlaw for minor depression and he got all of the major pscho-symptons you have. Effexor also was devastating for my daughter but I very quickly pulled it and she resolved immediatly. without doubt interferon is strong stuff sometimes with lingering effects, but hit the web and read about the major issues many have with effexor.
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2188151_tn?1338146649
Thank you all for your support and advice.  I saw a rheumatologist yesterday, my primary care the day before, and am seeing the doc who treated me on Thursday.  I also have a consult with a psychiatrist, need to call this morning for appt.  
   The rheumatologist gave ma a prescription for Lyrica.  I have had 16 different lab tests in the last couple days, to try to figure out what is causing all this pain.  She thinks I have fibromyalgia, but we only had a couple of lab test results to go on, which had been done by my primary the day before.  
   It feels good to be finally getting some answers.  However, I did notice that the rheumatologist states there is a link between viral infections and fibromyalgia. ( Which, of course, I'd already discovered online!) The thing is, I had the HEP C for 20+ years before it was diagnosed...why no fibromyalgia sx till after tx?  Anyway, I'll post again when I get more info.  
  Again, thank all of you for taking the time to share your hard-earned wisdom.  
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Avatar_f_tn
I am so sorry you are having so much trouble. Has anyone mentioned that one of the severe side effects from effexor can be hallucinations?. While some of your symptoms do sound a lot like clinical depression, it might be a good idea to look at the drugs you are taking to combat the depression.

I wish you good luck in getting to the bottom of these issues so that you can start enjoying your hepatitis-free life. Hang in there.
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Avatar_m_tn
If you don't mind a random possibility, here is a newer idea about what may cause or contribute fibromyalgia.

http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus

I have also sometimes wondered if two drugs can work synergystically against a virus, is it possible that 2 or 3  viruses can have a synergystic damage against an individual?

Just as in the 80's it was theorized that there was a virus; non A Non B hepatitis, but they could not prove it's existence until about 1990.  Perhaps there is yet something, like the retrovirus that they have not yet detected and that exerts damage in ways that isn't yet well understood.

willy

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Avatar_f_tn
Hector, this post is extraordinary.   I can only imagine it will help nuclear immensely.
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