does having Hep C cause you pain? my doctor says it does not.

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JustTina
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Date Joined Dec 2008
Total Posts : 23
   Posted 2/19/2010 10:18 PM (GMT -6)   
I saw a gastro for the first time today & when I requested a refill on the tramadol my rheumie had given me he said he does not give out narcotics. That Hep C does not cause pain & that something else was causing it.

When I ask what he suggested I take for the pain he told me tylenol. confused

I've read that it does cause muscle aches & joint pain + it can cause other diseases which cause pain. I can't remember what the one was called but it causes hip, back & leg pain. Those are the three places that I have pain. I even had my hip xrayed this past summer for it & had that sent in for this appointment. The xray showed nothing.....I'm assuming it'd only show arthritis, breaks & fractures, not some sort of blood disorder if that's what the disease is.

He told me to go back to the rheumie. When the rheumie found out I had hep c he pretty much said he was done with my dx, sent me back to the pcp & I had already made an appointment with the gastro on my own.

I'm not imagining the pain. It usually sets in about a week after the fatigue does, so I'm thinking the hep c is causing it. I went to the doctor when I was in pain & my blood pressure was ?/90. When I went back & wasn't in pain it was ?/75. Sure my bp would have been even higher if it had been one of my really bad days.

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 2/19/2010 11:23 PM (GMT -6)   
Hi, JustTina, and welcome to our forum.  I see that you post in the Fibromyalgia Forum, also, so I assume you have been diagnosed with Fibro.  I think that is what is causing your pain, not hep C.  I was diagnosed in '93 with chronic, active hep C and have never had pain from it.  I do, however, have joint pain from arthritis and hip replacements.  Some patients with end-stage liver disease have liver pain, but it does not seem that you are in that category.  I do not recall any hep C patients with the pain you describe.  When initially infected, there may be musculoskeletal pain and flu-like symptoms.  However, there are articles that note abdominal and musculoskeletal pain with a hep C diagnosis, so it can't be ruled out entirely.  It's too bad that your rheumatologist does not want to continue seeing you, as that is who you should be seeing for your fibro, and a GI doc or hepatologist for your hep C.  Just be aware that a damaged liver does not metabolize things well, so medications should be kept to a minimum.  You might try a moist heating pad or capsaicin cream for your joint pain.
 
Here's an article I found on the dual diagnosis of hep C and fibromyalgia:
 
Have you received any treatment for your hep C?


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 2/19/2010 9:34:23 PM (GMT-7)


worriedgirl
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Date Joined Apr 2009
Total Posts : 1044
   Posted 2/20/2010 2:35 AM (GMT -6)   
my mom used to get severe pain in her legs and it was always when her potassium is down. spironaldactone helps with potassium i believe. i would ask your doctor if your potassium is low.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


JustTina
Regular Member


Date Joined Dec 2008
Total Posts : 23
   Posted 2/20/2010 1:27 PM (GMT -6)   
Hi Hep3, my pcp sent me to a rheumie because my stool turned almost white, I wet the bed (found I had ureterocele in my bladder, that was removed) & he thought my organs may be shutting down & that I possibly had lupus. There were a whole lot of other symptoms going on as well.

I was thinking for a little over a year that I may have fibro due to the exhaustion, pain, brain fog + other things I had going on. I was treated for depression for several years prior to that but the meds didn't help. The rheumie did tests & when it came back I had hep c he sent me back to my pcp saying that he (the rheumie) was pretty much done.......he never diagnosed me with fibro or any auto immune disease, just hep. Only tests that I am aware of that came back off were my uric acid, liver enzymes, vitamin D, rheumatoid factor & the hep c.

I was the one who requested the test for hep c after my liver enzymes had came back elevated on two occasions & the doctor wasn't acting on it. My pcp told me that it was common for people who were overweight to have elevated results but he couldn't understand why mine were because I wasn't overweight.

I was never dx with fibro........I just thought I had it & was asking questions about it on the board. So I guess I'm back to square one with the unexplained pain. cry

Worriedgirl- is the spironaldactone available over the counter? and is it safe for someone with hep? I'm really worried about putting anything in my body now that may harm my liver. Wonder if just upping my intake of bananas would help enough?

I asked the doctor about a diet & he just told me to 'eat healthy'. Well, duh. I consider dairy products healthy but I've read that I should stick to low-fat or soy, he made no mention of that. Some people might think those Healthy Request frozen meals are healthy but I also read to stay away from processed foods. He really should have elaborated on things, especially since I asked then asked again when he gave me such a vague answer. Told me food isn't going to affect the way I feel which is total BS, I know it has a tremendous affect on the way *I* feel, others may be different.

JustTina
Regular Member


Date Joined Dec 2008
Total Posts : 23
   Posted 2/20/2010 1:45 PM (GMT -6)   
hep93 said...

Have you received any treatment for your hep C?


Forgot to answer that. No. That was the first (and last) visit with that gastro. I'm going to check with a medical university first thing next week. Their gastro program is listed in the top 5 for the country.

His assistant said I have 3 which was the most responsive to treatment.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/20/2010 1:59 PM (GMT -6)   

JustTina, was your rheumatoid factor positive?  If so, that could be the cause of your pain.  You need to see a hepatologist for your hep C, not a GI doc.  When you call the medical center, ask to make an appt. with the Hepatology or Liver Transplant dept.  If I were you, I'd also change my PCP, if possible, as he doesn't seem very knowledgeable.

Spironolactone (Aldactone) is a prescription diuretic.  It is usually given in conjunction with Lasix, to maintain potassium levels and also to give extra duretic effect.  You can also take potassium tablets alone, but you really should not take anything without consulting with a hepatologist.  The OTC potassium pills aren't regulated and are not in the strength you would need and you don't even know if you need them.

My understanding of the diagnosis for fibro is that a person must have at least 7 of 12 (?) positive pressure points or points of pain in the body.

The most important things to remember for a hep C or liver diet are:  No beef, fresh or frozen fruits and veggies, low salt, and filtered water.  Avoid processed foods as much as possible.

Good luck!

Hugs,

Connie

 


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


JustTina
Regular Member


Date Joined Dec 2008
Total Posts : 23
   Posted 2/20/2010 2:58 PM (GMT -6)   
My rheumatoid factor came back high, so I'm assuming that's positive?

Thanks for telling me about hepatologist. I was looking at VCU's gastro site & when I saw that I thought that's where I should start, but wasn't 100% sure.

I got rid of the pcp when the results of my CT scan came back showing he had misdiagnosed EVERY single issue I'd gone to him about.

Think I'm going to follow your advice & not take anything until I see the hepatologist, I feel most comfortable about that. I really do not want to put anything in my body that could potentially harm my liver or result it in doing extra work.

I only have 4 of the fibro pressure points. I was thinking that maybe I'd just started with the symptoms? I do have other unrelated pains that I didn't even know I had until the rheumie started shoving around on me in different spots & they were very tender.

I was wondering if canned vegetables would be bad for me? We were going to have a huge garden this summer & I was going to put up a bunch of things for the winter months but now I wonder if that's something I should not be doing? I could freeze some things but we have limited freezer space & everything always gets that ice on it and/or freezer burn.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/20/2010 3:07 PM (GMT -6)   

I'm never done home canning, so I don't know what is used.  If it's salt or brine, then no...you shouldn't.  That is the objection to canned veggies from the store.  They are high in sodium.  So nothing pickled.  However, if your garden veggies are put up in jars with no salt, that should be fine.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


JustTina
Regular Member


Date Joined Dec 2008
Total Posts : 23
   Posted 2/20/2010 3:57 PM (GMT -6)   
I can't remember if I put salt in the green beans or not, if I did it was very little. I remember when I ate them thinking something was missing then it dawned on me that they needed salt.

Is there a salt substitute? I remember my ex-MIL getting something from the health food store that tasted a lot like soy sauce. I want to amino something.....enzymes? Or would natural salt be any better? Most things I put nothing on, but I do like a sprinkle here & there, mainly meat. I will be ordering chicks soon so will have fresh chicken this summer. It's the hormones & such that they give to the animals that I want to steer clear of. Correct?

Thanks Connie for all the help! You've been much more informative than the doctor I saw. I was really angry that I left there knowing no more than when I went.

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1044
   Posted 2/20/2010 4:40 PM (GMT -6)   
spironaldactone is a prescribed drug and is safe for the liver. my mom was on it up until she died and it saved her life for an extra year combined with lasix(dierutic) and lactulose.
JustTina said...
Hi Hep3, my pcp sent me to a rheumie because my stool turned almost white, I wet the bed (found I had ureterocele in my bladder, that was removed) & he thought my organs may be shutting down & that I possibly had lupus. There were a whole lot of other symptoms going on as well.

I was thinking for a little over a year that I may have fibro due to the exhaustion, pain, brain fog + other things I had going on. I was treated for depression for several years prior to that but the meds didn't help. The rheumie did tests & when it came back I had hep c he sent me back to my pcp saying that he (the rheumie) was pretty much done.......he never diagnosed me with fibro or any auto immune disease, just hep. Only tests that I am aware of that came back off were my uric acid, liver enzymes, vitamin D, rheumatoid factor & the hep c.

I was the one who requested the test for hep c after my liver enzymes had came back elevated on two occasions & the doctor wasn't acting on it. My pcp told me that it was common for people who were overweight to have elevated results but he couldn't understand why mine were because I wasn't overweight.

I was never dx with fibro........I just thought I had it & was asking questions about it on the board. So I guess I'm back to square one with the unexplained pain. cry

Worriedgirl- is the spironaldactone available over the counter? and is it safe for someone with hep? I'm really worried about putting anything in my body now that may harm my liver. Wonder if just upping my intake of bananas would help enough?

I asked the doctor about a diet & he just told me to 'eat healthy'. Well, duh. I consider dairy products healthy but I've read that I should stick to low-fat or soy, he made no mention of that. Some people might think those Healthy Request frozen meals are healthy but I also read to stay away from processed foods. He really should have elaborated on things, especially since I asked then asked again when he gave me such a vague answer. Told me food isn't going to affect the way I feel which is total BS, I know it has a tremendous affect on the way *I* feel, others may be different.

The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/20/2010 5:53 PM (GMT -6)   

JustTina, there are salt substitutes in the grocery store.  Lemon juice is also a great substitute for salt.  Soy sauce is loaded with sodium, so steer clear of that.  So much the better if you can keep away from the hormones in meat.  The reason we say no beef is that it is the most difficult thing for the liver to digest.  If the liver is damaged, it puts extra strain on it.  In addition, we don't need the fat in beef.  If you use salt at all, try sea salt in a grinder.  It's lower in sodium than regular salt and the taste is more intense so you only need a tiny bit.  I think Kosher salt is also lower in sodium.

If you can raise your own chickens and veggies, you will be healthier than most of the population.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3218
   Posted 2/20/2010 10:20 PM (GMT -6)   
JustTina, Connie said it and I'll reiterate it-no salt. Well, as little as possible. MSG and other so-called salt substitutes often are as bad or worse than table salt. Kosher salt (by volume) is half as salty as table salt. When I use salt, that's my choice, but in tiny amounts. As Connie said (we conversed, emailed about this several times), use lemon or lime juice, spices or hot peppers instead of salt. Hot sauces and Worstershire often contain tons of sodium in them. Start checking the labels on food you buy. The amount(s) of sodium in food products is shocking. There's a thread somewhere in here where we spoke about these things at length. Remember that the daily average for sodium on most foods is double that of what we really need, plus the serving size they're based on is smaller than most people use. For instance, a serving of bread is one slice. Pretty tough to make a sandwich out of a single slice, unless it's open-face. **David**

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/20/2010 11:35 PM (GMT -6)   
has anyone gone thru interferon in this forum? my says she experiences pain where liver is plus gastro area,she stage 1 disease, stage 2 scarring. she has had hep c for 26 years, I've had hepc 40 yr's no issues at all, I kdon't drink alcohol, nor does my wife, but she was a little more suseptable I guess, I'm stage 1 and stage 1. I got hep c thru blood tranplant in 1970, no screening back then, probably donated blood from junkie

artist guy


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3218
   Posted 2/21/2010 12:04 PM (GMT -6)   
I did the interferon/ribavirin therapy for a year. There was no abdominal pain in my case. I did have pain from swollen ankles and knees, though my knees were shot, long before that. Does your wife have fluid in her abdomen? Enough swelling could cause pain. I got my virus when I was 14, from a blood transfusion. I'd never had a drink or taken any drugs (at that time). **David**

Post Edited By Moderator (hep93) : 2/21/2010 10:45:20 AM (GMT-7)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/21/2010 12:53 PM (GMT -6)   

ArtistGuy, welcome to the Hepatitis forum.  I see you also post in the Crohn's forum.  Sorry you have the misery of that disease.

I tried 2 courses of interferon when I was first diagnosed with hep C back in '93.  Both times, my white count plummeted and I was taken off treatment.  Therefore, I haven't been anxious to try again with the combo, but am considering the new trio of drugs that will be available in about a year (in trials now.)  I didn't, however, have any abdominal pain with treatment.

Your hepatitis is slow to affect your liver, but don't assume that you will be okay.  I've had it for 42 yrs. now.  It wasn't until I'd had it for 37 yrs. that I was diagnosed with liver cancer.  Thanks to treatment at Mayo, I've been in remission for nearly 3 yrs. now.  If you have chronic active hep C, it is continuing to attack your liver.  Have you considered going on treatment?


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/21/2010 4:58 PM (GMT -6)   
I had a liver bio, a few years ago and my gi guy said no need, my wife went to hepatologist and he wanted her to go on the interferon, but she is so sensitivee to any med, that her shrink said for her I wouldn't be a good idea, she has a sluggish gall bladder so she really watches what she eats, no fatty foods alot of green leafy veg's, they don't know if that gall bladder is caused by liver or not
artist guy


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/21/2010 7:57 PM (GMT -6)   
Artist Guy, all I can say is that that is very unusual for a doctor NOT to recommend treatment to someone with hep C.  I hope your luck holds out.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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