Aa
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.
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.
I had a similar experience three years ago, Went to Johns Hop and they told me cant be the liver, Had every test know and finally got a Dr to diagnose this , for me it was OSD. A muscle that opens and closes to allow food etc to pass to your lower intestines. When you have Hep c , you are eligible for a plethora of abdominal conditions. Balances of bile and hormones are screwed up dependent on the level of inflammation in your liver. I had to completely change my diet to a fat free one and go on pepcide(the little white ones) twice a day. For months I was on Pain pills but then they figured it out! don't give up, find someone who cares. I took me a long time but it was possible, I am on my last week of TX and truthfully , and through allot of friends on bad days I took pain pills, just non -aspirin tylonol etc. Just oxicodon (sp) and no my dr did not give it to me and if I ended up with a problem , well I didn't loose my job and I coped much better than before I took them. We are on chemo, not nice , some people think thats bad but if you only take them during the horrific times you'll be fine. I hope they find the root of your problem and this is not ness , but if it is, then they should give them to you, with dignity . You will be in my prayers
If your platelets are low and most of us on tx have low platelets, you don't want to be pumping aspirin into your system. The wisest choice would be Tylenol as directed.
I would not want to be on a daily narcotics regiment either. Too addictive and treatment has certainly taught me how to cope with pain.
Additionally, aspirin is very hard on the stomach and many of us suffer from reflux or chronic heartburn because of the riba.
Tylenol, as directed is the best route.
Trinity
I would not want to be on a daily narcotics regiment either. Too addictive and treatment has certainly taught me how to cope with pain.
Additionally, aspirin is very hard on the stomach and many of us suffer from reflux or chronic heartburn because of the riba.
Tylenol, as directed is the best route.
Trinity
BTW...i remeber someone saying the SOC drugs are tougher on your kidneys than the liver...this is why to adviod the advil and asprin
Tyenol is safe.as long as you dont over do it...and drink alchol with it...BTW...tyenol is harder on the liver and the other oneslike advil, are harder on the kidneys...choose your poison carefully...but most choose tyenol dont know why tho
Yes they say people with sick livers can safely take tylenol but I don't believe it and I wouldn't call tylenol the first choice for any pain for me. I really don't think it as effective as asprin.
MB: ...They can write the narcotic without the tylenol and should for anyone in stage 3 or later, or with as much inflammation as you have. Tylenol is toxic to a sick liver and every drug can push...
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This is incorrect information. Tylenol taken within properly prescribed limits is often the first choice of liver specialists, especially during treatment. Many drugs list "liver toxicity" but it's a matter of dosage.
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This is incorrect information. Tylenol taken within properly prescribed limits is often the first choice of liver specialists, especially during treatment. Many drugs list "liver toxicity" but it's a matter of dosage.
I really apologize for jest skimming and replying...just got home and was staving and shoveling food..trying to respond.. your biopst could have set off an infection..it does happen..the red face is a classic symptom, or can be, of a liver in deep trouble.
Costochronditis, rib cage inflammation could be your pain source as could GB;adder, they both radiate around, but that would not explain all the vessels in your face breaking.
If they are, you may be in more liver distress than their tests are indicating.
I'm not an MD, just a patient, but if I were you, I'd get to a real hepatologist as soon as you can, and can the doctor who is accusing you. See someone else it that practice if you can't move. Knowing what is hepatoxic when your liver is diseased is the first logical thing any medical pro with a brain would do, is learn about that. And naturally you discovered tylenol's bad record....so now you are immediately pigeon holed as a druggie. Most people tough out pain too long OR they have a CLUELESS doctor who should have caught and diagnosed months or years earlier...but it's always more convienient to blame the patient than admit you don't know and don't give a doubleDamm. Nice work if he can get it.
Feel free to go to rate a doctor sites and put in your 2 cents. The level of dismissiveness sometimes is too astounding in print to be believable, but it happens...a lot. I even choose a woman doctor thinking they wouldn't have that...and she had it in spades.
And if you are bright, inquisitve or have any nedical background, rather than appreciating that, they feel threatened that you know a lot...or are doing your own research....what a crock.....
I even saw they they wrote it in my charts as if to warn others....this patient is "reading on the internet"" Oooooooooooowwwwwwwwww big bad silly girl. Yeah, big bad girl that finally diagnosed her last 4 conditions alone, with no help from them....things that still would be undiagnosed if i hadn't put in upteen hours getting to the bottom of.....
welcome to the world of HCVand HIV...where no matter how you got it, a certain number will always consider you a leper, or a druggie, or whatever sterotype they've assigned the disease even if they know that's not how you got it.
mb.
Costochronditis, rib cage inflammation could be your pain source as could GB;adder, they both radiate around, but that would not explain all the vessels in your face breaking.
If they are, you may be in more liver distress than their tests are indicating.
I'm not an MD, just a patient, but if I were you, I'd get to a real hepatologist as soon as you can, and can the doctor who is accusing you. See someone else it that practice if you can't move. Knowing what is hepatoxic when your liver is diseased is the first logical thing any medical pro with a brain would do, is learn about that. And naturally you discovered tylenol's bad record....so now you are immediately pigeon holed as a druggie. Most people tough out pain too long OR they have a CLUELESS doctor who should have caught and diagnosed months or years earlier...but it's always more convienient to blame the patient than admit you don't know and don't give a doubleDamm. Nice work if he can get it.
Feel free to go to rate a doctor sites and put in your 2 cents. The level of dismissiveness sometimes is too astounding in print to be believable, but it happens...a lot. I even choose a woman doctor thinking they wouldn't have that...and she had it in spades.
And if you are bright, inquisitve or have any nedical background, rather than appreciating that, they feel threatened that you know a lot...or are doing your own research....what a crock.....
I even saw they they wrote it in my charts as if to warn others....this patient is "reading on the internet"" Oooooooooooowwwwwwwwww big bad silly girl. Yeah, big bad girl that finally diagnosed her last 4 conditions alone, with no help from them....things that still would be undiagnosed if i hadn't put in upteen hours getting to the bottom of.....
welcome to the world of HCVand HIV...where no matter how you got it, a certain number will always consider you a leper, or a druggie, or whatever sterotype they've assigned the disease even if they know that's not how you got it.
mb.
I would take exception to them giving you tylenol for pain. they can write the narcotic without the tylenol and should for anyone in stage 3 or later, or with as much inflammation as you have. Tylenol is toxic to a sick liver and every drug can push the organ more towards failing.
You nausea could be caused by GB dysfunction or by an ulcer or stomach hernia, have you had endoscopy yet?
did you have the HBP before all this? I'm wondering if this is why you haven't been biopsied yet....or if you have, what did it say...what stage/grade etc?
mb
(ps I have fibromyalgia and other pains too...but I know what you mean about this type pain. the exaustion is the HCV...in my case my pituitary had stopped producing which happens to a lot of HCV people..which means tissue doesn't repair....but the abdomen pain was unbearable at times.......I never got up after a while...and every attack was like a rollercoaster ride of pain, and chills and face ice cold...(probably had some peritonitis because it went so long....my favorite fantasy, because they kept telling me I was fine, was, well then would you just remove my last 2 or 3 ribs...just cut them out and I know I'll feel better. Anyway, sorry you have to be here, welcome to the "patient's world"....and it really means "be patient and don't go postal" cause when you see the level of incompetance at work most of the time you'll want to....
mb
You nausea could be caused by GB dysfunction or by an ulcer or stomach hernia, have you had endoscopy yet?
did you have the HBP before all this? I'm wondering if this is why you haven't been biopsied yet....or if you have, what did it say...what stage/grade etc?
mb
(ps I have fibromyalgia and other pains too...but I know what you mean about this type pain. the exaustion is the HCV...in my case my pituitary had stopped producing which happens to a lot of HCV people..which means tissue doesn't repair....but the abdomen pain was unbearable at times.......I never got up after a while...and every attack was like a rollercoaster ride of pain, and chills and face ice cold...(probably had some peritonitis because it went so long....my favorite fantasy, because they kept telling me I was fine, was, well then would you just remove my last 2 or 3 ribs...just cut them out and I know I'll feel better. Anyway, sorry you have to be here, welcome to the "patient's world"....and it really means "be patient and don't go postal" cause when you see the level of incompetance at work most of the time you'll want to....
mb
sounds like my story. they didn't believe I was in such pain either, but I finally made it to ER....and they misdiagnosed as had my primary.
turns out it wasn't JUst the HCV, or just the enlarged liver a nd spleen, it was the gall bladder ripping loose it was so infected and contorted.
You need a hidascan to see if your GB is working, and a complete endoscopic to see if you have upper hernias, or lower bowel probs.
I'd make them do a CT SCAN and A BARIUM EXAM. iF YOU ARE IN EXTREME PAIN SOMETHING IS CAUSING IT. iN late stages just fluid in the abdomin can do this, but it sounds like it could be other things.
any small tumor in the colon or intestines can cause leakage and great pain, and if your pain is worse after eating protein or fat it could be your GB even if you have no stones.
It sounds like you need a doctor to take your pain seriously. Mine did not, and one even said...oh just get used to it, you will probaly always have pain...like that was OK...even though sseveral times I refused to go to emergency because the pain of getting out of bed and getting dressed was too much....just let me die but don't move me I told hubby.
finally I took him in with me as a witness, and said if I don't get the tests I want to see what this is, here is my legal witness to being refused.. then and only then did they order the hidascan I'd been asking for for 2 years.
hope you find out what it is...the liver doesn't have any nerves, so pain in the area has to be from a surrounding issue. could be inflammation of the ribcage, pancreatitis, or other things too...no way to know on so little info, but park yourself in your docs office day after day until you get some info that helps. (BTW my ultrasound showed nothing even though my surgeon said it was the worst diseased GB he'd ever removed. So don't settle for ultrasound if trying to rule out GB.. you need hidascan WITH protein injection.
mb
turns out it wasn't JUst the HCV, or just the enlarged liver a nd spleen, it was the gall bladder ripping loose it was so infected and contorted.
You need a hidascan to see if your GB is working, and a complete endoscopic to see if you have upper hernias, or lower bowel probs.
I'd make them do a CT SCAN and A BARIUM EXAM. iF YOU ARE IN EXTREME PAIN SOMETHING IS CAUSING IT. iN late stages just fluid in the abdomin can do this, but it sounds like it could be other things.
any small tumor in the colon or intestines can cause leakage and great pain, and if your pain is worse after eating protein or fat it could be your GB even if you have no stones.
It sounds like you need a doctor to take your pain seriously. Mine did not, and one even said...oh just get used to it, you will probaly always have pain...like that was OK...even though sseveral times I refused to go to emergency because the pain of getting out of bed and getting dressed was too much....just let me die but don't move me I told hubby.
finally I took him in with me as a witness, and said if I don't get the tests I want to see what this is, here is my legal witness to being refused.. then and only then did they order the hidascan I'd been asking for for 2 years.
hope you find out what it is...the liver doesn't have any nerves, so pain in the area has to be from a surrounding issue. could be inflammation of the ribcage, pancreatitis, or other things too...no way to know on so little info, but park yourself in your docs office day after day until you get some info that helps. (BTW my ultrasound showed nothing even though my surgeon said it was the worst diseased GB he'd ever removed. So don't settle for ultrasound if trying to rule out GB.. you need hidascan WITH protein injection.
mb
Sounds exactly the same pain as my gall stones when they act up - sternum, back, rather than liver problems.
Not knowing more of the facts it is difficult (as a lay person) to point you in the right direction. If you have had the chance to read any of the posts in the HCV forum, you will see that the members are largely self-educated. This, in part is due to the lack of education and awareness by those in the medical field. Adopting the same attitude as it relates to pain, pain management, etc. is certain to be equally productive when you next visit a doctor – and maybe even keep you out of the ER. There is a feeling of empowerment to having a somewhat equal footing when visiting doctors. Who knows, you may discover that narcotics aren’t an effective treatment for your pain.
Following is an example to get you started:
1. Pain can be *classified* in several different ways.
a. Duration since time of onset: pain can be acute or chronic.
b. Perpetuating mechanism: mechanical, naturopathic, or visceral.
3. Measurement of Pain: pain intensity can be measured quite quickly and productively with a 0-10 point scale with zero fixed as “no pain” and 10 fixed as “the most severe amputation intensity level pain that you can imagine.”
4. Character of Pain: Describe your pain rather than the symptoms
a. Burning character pain suggests a diagnosis of reflex sympathetic dystrophy.
b. Dull, throbbing, and aching pain supports a diagnosis of osteoarthritis, myofascial pain, and fibromyalgia.
c. Electric, tingling, and numb quality of pain may suggest radiculopathy, plexopathy, polyneuropathy, compressive mononeuropathies such as carpal tunnel syndrome, and intracranial pathology such as thalamic pain, multiple sclerosis, and other conditions.
d. Cramping suggests visceral pain such as the constipation that not uncommonly results from prescription of opioids or anticholinergic antidepressants without concomitant treatment of medication induced intestinal hypomotility. Patients who deny mood depression but describe their pain as suffering, miserable, depressing, or tiring may have atypical depression with pain highly responsive to antidepressants or anxiolytics.
This website should help you both now and in the future – especially if you decide to treat the HCV. I wish it were formatted differently since it is cumbersome to slog through. Don’t be fooled by the name of the site or the picture of the lady at the top.
http://www.comawakening.com/pain.html
Following is an example to get you started:
1. Pain can be *classified* in several different ways.
a. Duration since time of onset: pain can be acute or chronic.
b. Perpetuating mechanism: mechanical, naturopathic, or visceral.
3. Measurement of Pain: pain intensity can be measured quite quickly and productively with a 0-10 point scale with zero fixed as “no pain” and 10 fixed as “the most severe amputation intensity level pain that you can imagine.”
4. Character of Pain: Describe your pain rather than the symptoms
a. Burning character pain suggests a diagnosis of reflex sympathetic dystrophy.
b. Dull, throbbing, and aching pain supports a diagnosis of osteoarthritis, myofascial pain, and fibromyalgia.
c. Electric, tingling, and numb quality of pain may suggest radiculopathy, plexopathy, polyneuropathy, compressive mononeuropathies such as carpal tunnel syndrome, and intracranial pathology such as thalamic pain, multiple sclerosis, and other conditions.
d. Cramping suggests visceral pain such as the constipation that not uncommonly results from prescription of opioids or anticholinergic antidepressants without concomitant treatment of medication induced intestinal hypomotility. Patients who deny mood depression but describe their pain as suffering, miserable, depressing, or tiring may have atypical depression with pain highly responsive to antidepressants or anxiolytics.
This website should help you both now and in the future – especially if you decide to treat the HCV. I wish it were formatted differently since it is cumbersome to slog through. Don’t be fooled by the name of the site or the picture of the lady at the top.
http://www.comawakening.com/pain.html
A couple things I thought I'd mention (as a layperson, of course!)
1. perhaps a cardio work-up is in order. It seems like many of the symptoms you list mesh with those that have recently come to the forefront as female specific cardio issues.
2. Seeing as your pain began to amplify around the time of your dx, perhaps anxiety is the cause, perhaps even full blown panic attacks?
Anyway, just thought I'd throw that out there....Pam
Hope you find some answers AND relief soon!!
1. perhaps a cardio work-up is in order. It seems like many of the symptoms you list mesh with those that have recently come to the forefront as female specific cardio issues.
2. Seeing as your pain began to amplify around the time of your dx, perhaps anxiety is the cause, perhaps even full blown panic attacks?
Anyway, just thought I'd throw that out there....Pam
Hope you find some answers AND relief soon!!
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.
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
-- Jim
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?
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?
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.
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.
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.
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