Aa
A
A
A
Close
Hepatitis C Community
13.4k Members
Avatar universal

Can this be for real?

Hey all...not only am I a licensed nurse, but I was also diagnosed with Hep C in the begining of November, 2008, which was contracted through a needle stick from an infected patient. I will admit that when I was diagnosed, I didn't know much about the disease, now I consider myself a well-study. BUT...

I really need reassurence from people who are going, or have gone through the same things that I am currently suffering through.

So I guess my question is...can this disease cause unbearable pain? (I do know the answer..just need reassurence).
I have been admitted to the Emergency Room 7 times in the last 2 months for uncontrolled pain that starts at my sternum and radiates around into my middle back because my physician thinks I am lying, and seeking, and refuses to rx things for comfort, even though there is no history what-so-ever to support his opinions of me being a seeker. I was perfectly healthy 3 months ago. The pain is soooo bad that I start to sweat, shake, cry, moan, scream, claw out. I have had hypotension once and passed out because of the pain (that was a good day..my Director of Nursing had to rush me to the ER). I have been to 3 GI docs...3! My main concern, of course, is to treat the source and the pain will eventually fade. All 3 specialists that i have seen have accused me of being a drug seeker because of the frequent trips to the ER (trust me that that is always the last option) when it should have been prevented by them in the first place.

I already have feelings of shame, and embaressment. I am scared and anxious all the time. I am so weak most of the time from the tx that I can barely move, and when I do move, it hurts. I feel sad for what I a putting my loved ones through, and am terrified that I am going to lose the best job ever because I am frequently calling in sick. I am in moderated to severe pain most of the time, and when I am not hurting, I am vomitting constantly, which causes more pain. 2 weeks after my biopsy, my liver had become sooo inflamed, that it was protruding over my ribs and stomach, and was very palpable to me and to the 5 other nurses I had feel it, just to make sure it wasn't in my head. Nope... it was very real. My hair has started falling out, I think mostly due to stress, I am getting really bad skin blemishes and my face has turned bright red, like a sunburn only I wasn't outside. All of these "side effects" or "concerns" were voiced to each doctor, and all were ignored...except one md did give me a rx for hydrocodone 5mg/500mg tylenol, after he was repeatidly asked not to rx items that were hepatotoxic and refused to see me. Instead, every time a concern was voiced, I was told to go to the ER. What the hell am I paying you for then?  He cont to do this the entire time he was my doctor.
None of them cared what I had to say, the way I felt, they didn't care about my questions,,,well lets just say that my quality of life has gone from being a happy very healthy 27 yr F looking forward to a bright future in med school, and hopefully a long career in surgery, to someone who can barely get out of bed everyday, from someone who has never called in sick to work a day in her life, to someone who barely holds a position. Am I sad, yes, am I depressed, no, am I scared, yes, but not just for me. I am scared for everyone who is being made to suffer, cry, and hurt.

I knew that this was going to be one of the hardest things to ever get through, but I didn't think it would be this painfully hard. It shouldn't have to be. No one should make several trips to an ER, no one should ever be talked down to. Every single one of us has the right to live....live free from pain, and opinions. We have the right to  have the best quality of life as possible.

So for all the M.D.s reading this, I really hope you grow a heart or two. No matter what our diagnosis is...no one should be left to suffer like this just because you have a few of your own personal opinions. Please keep those opinions to your self and treat all of your patients on personal level. And please always remember that a patients pain is what they say it is...not what you say it is. It hurts me to know that my 2 year degree shows more professionalism, than someone with a Ph.D.

I know a lot of mds are leary about giving out the narcotics because of dependency...but if your patient has a diagnosis known to cause pain, among other things, why let them suffer? Can we work together, patient-physican, and figure this thing out?

I want nothing more in this world that to be well again and if that means that I need to take pain pills to ease the pain enough to get me through this, then I am going to do it...if complications should arise from that choice, then I will deal with it when the time comes...right now I am just trying to stay alive...and thats what I pay you thousands of dollars for...to keep me alive, without your judgements. So shut up and do what we all are paying you for.


19 Responses
545538 tn?1295995617
I'm sorry you are going through such a difficult time with so much discomfort! I also have no history of drug use but getting something stronger than tylenol for my constant headaches is a real effort on SOC. Good luck to you. I will pray for you that you can become pain free. Keep on telling them and telling them and telling them until they do something about it.
Avatar universal
Seek out a pain clinic, perhaps the can help you cope with the pain.
179856 tn?1333550962
I am in moderated to severe pain most of the time, and when I am not hurting, I am vomitting constantly, which causes more pain.

Dear Perkes,

What you have related might be possible but is certainly not a common event for people with hepC that I am aware.  It doesn't mean it's not possible but certainly it is not an every day type thing.

I would have to agree with your doctor, with you in such severe pain eminating from your sternum like that - I would be looking for something aside from the hep to be causing all of this.  The liver itself has no nerves inside of it that would cause pain (which is why a biopsy is relatively painless event for almost all) - so the inflammation would not be causing anything this drastic - and if your liver was THAT inflammed something just sounds off to me as I had stage 3 fibrosis and had nothing of the sort happen.

Treatment is tough there is no doubt about it.  Some people are able to handle it better than others and they are able to muddle through no matter how difficult it gets.  Others just shut down and simply can't tolerate the pain and side effects.  Everybody is different.  The lethargy is something that the docs really can't do anything about but should you have anemia for example they can do something to help that.  

Are you having frequent CBCs and liver panels run?  What are your liver enzyme numbers? Is it possible that you have hemolytic anemia and this might be compounding the normal lethargy?

It sounds to me as if you are depressed in addition to the anxiety.  My doctor started me on antidepressents a month BEFORE I started treatment.  The interferon can really cause serious problems with both issues and I agreed to start it prophalactically.  It helped me a lot.  Are you on any AD?  Has your doctor discussed them with you?

If he has not I would contact him immediately as this is a WELL known problem and can be remedied.

Without knowing too much about your numbers it's hard for us to guess at much but we can all understand that treatment isn't fun however most of us do find it "doable".  I did 72 weeks and have been cured for two years as of next month - so there is something at the end of the road to hope, pray and hang on for.  Good luck.


Avatar universal
There are many surgeons who have HCV and carry on with their careers. If your goal is to become a medical surgeon, as you said, your best option is to get to the bottom of your problems as soon as possible, even if you have to travel to seek medical advice elsewhere. Surgery studies are some of the toughest around, with gruelling schedules, so you owe it to your dreams to put this behind you.

I've never had extreme reactions to HCV myself. Are you sure that it is not something else at the root of your current woes, something as yet undiagnosed?
Avatar universal
While anything is possible, no these are not symptons of Hepatitis C and that may be the problem if you're trying to link the two (Hep C and  your symptons) when you walk into a doctor's office. Frankly, you'd probably be better off starting over with a new doctor unaffiliated with your hospital, and calmly describing your pain without mentioning your Hep C, except as background medical history if asked. I'd also leave out the fact that you've visited so many doctors, etc, and have been labled a "liar". Doctors sometimes are monkey see, monkey do -- so if you want a fresh approach, sometimes you have to start fresh. You may have a serious problem simply not diagnosed or not, but it doesn't seem like you're making much headway with your current doctors. Either their approach is wrong or your approach to them. Maybe time to change both.

-- Jim
228936 tn?1249097848
I have also never heard of that as a symptom from HVC. I've had it for many years and to my knowlege it has never caused me pain. I have no liver damage yet and my GI wants me to wait for the new drug instead of Interfueron. I do seem to get fatigued and don't have normal energy.
Have an Answer?
Top Hepatitis Answerers
317787 tn?1473362051
DC
683231 tn?1467326617
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.