My question is.... after being in remission for many years, .."Poof "
I get all the old symptoms, and I can not stay awake if you paid me!
What does one do during this flare-up?
Tx has never been an option for me.
I have felt like I have had this under control for so long, I am really kinda surprised.
If anyone has ANY suggestions, I would really appreciate it.
Thank you SO Much!!
Hugs, Love & Light
Maya & Me.
Maya is my faithful pup, who loves me always :)
you know, I don't know many people who manifest this disease with flare-ups, but I'm one of them...I have way less of them now, and most of them are very subtle now, but I can tell that I'm in one...used to be, that they were much more virulent, with many more symptoms, etc...
personally, from all I've read and studied, in my case, I think that my stress level was bringing them on more then anything, (course, I can't be sure of that, I just think it was a big contributing factor) I used to be far more stressed about having this...there are many articles now, hypothesizing this...
Course, you have a completely different chemistry, and unfortunately, not even the docs and experts have a complete handle on just exactly what the disease is doing, etc...as compared to some other etiology or not, so many things to consider...
What are your stats if you don't mind me asking? I'd just take extra super care of myself, and do a lot meditating, relaxation tapes (there is a great place to go, hypnosis dowloads dot com.., they are only like 7 bucks a piece for their downloads, which you can listen to on your puter or ipod)
Hopefully, youre going to a good hepatologist, and are keeping tabs on your labs, etc...even if you are waiting for something else better, etc...
Any doglover is okay in my book, my Petunia says hello to Maya! lol....
Thank you for responding. I don't even remember my stats. I had a hepatologist where I used to live. His advice back then ,after the biopsy was, do the Tx. I refused and changed my diet, lifestyle and have been free of symptoms for 2 yrs.
I did start a new job, and was stressed which could've triggered this. But as I look back during the last few weeks, I saw signs of relapse, I hadn't seen in a long time.
Thanks for idea of relaxation cds. I will use one tonight. I think I am better today, I made myself stay out of bed all day, but the body aches suck. I am praying tomorrow will be better.
I went onto your thread and read it and I feel alittle connected of the fact that about a week and ahalf ago I had to stop tx. because I developed an intense rash and itcht hive combo and by the 12th week on tx. I only dropped 2.5 log so they labled me a slow responder. I am geno 1, 4.3 vl. biopsey is stage1 mild, no inflammation. Anyway, I was so upset and felt like a failure and I also felt when i stopped the tx. , that I was doing myself wrong and my loved ones. Then the other night I went to ride my horse ( which when I was on tx. and was aneimic and also taking procriet with riba/interf., I had no energy for him and felt so guilty with that too) anyway, I had a feeling come over my body , I looked up at the dusky sky, I was not tired riding, I felt fantastic, And right then I said I will be fine, I am going to take care of not only myself with alot of healthy eating , but all my loved ones and animals. No more cheating all of them or myself with the toxins that were making me so ill.That night I went home and my little princess maltese BIANCA, had also developed a rash. I broght her to the dr. and then decided to expand this healthy eating onto my dogs too. so I changed there diet to freash veggies meat and supplements. Bottom line, I want to live for a very long time , happy and productive and healthy and I also want my babies and loved ones to live long and healthy and happy too. So now I am devoting my mental state to not only treating myself naturally, but also all my little babies too. My horse is ROMEO, my BIANCA ,also have a toy fox terrier , girl RAVEN and my boy german pinsher POGO. PHEW !!!!. Well lets all keep up the good work on battling this virus, and hopefully a new better drug is around the corner.
I used to get flare ups, periods of time where I would just be drag a$$ing around like a zombie on sleeping tabs - incredible fatigue. The only thing I found that would crush the fatigue was vigorous aerobic exercise (ironically enough). And by vigorous exercise, I mean really get your heart pumping and get yourself sweating for at least 30-40 minutes at least 3-4 times a week. For me mountain biking was the best way to do it. Plus it was really fun, so it was easy to "force" myself to do it. Plus eating right, avoiding vice (drinking/smoking/drugs) and getting enough rest, obviously all of those factors are really important too. A little coffee in the morning always helped as well (plus it's good for your liver). I found adhering to these principles is what really works (and also works for uninfected people too), although even then you can feel the fatigue creeping up on you on the "in between" days when you're not exercising.
I just finished treating 3-4 months ago and it looks like I'm cured now. So far the fatigue I used to get from time to time when I was infected seems to have gone away. I feel really good and I'm not even exercising at all. Plus I'm drinking beer like a frat boy and eating fattening foods too. It's still too early to tell for certain, but I think in my case getting cured of HCV also means getting cured of my age old chronic fatigue syndrome. Unless you're medically incapable of taking treatment, don't write it off with a hand waving gesture without considering the possibility it may also help you get rid of your fatigue. That doesn't always happen, but in many cases I'm convinced it does.
he he, if you keep drinking like a "frat boy" me, and some other motherly posters are going to come find you and give you a can of a$$ whippin! ha ha! Sweetie, your organs have already taken quite a beating, give em a rest for crissakes~ :) You know I'm *mostly* kidding...
As to your advise on getting rid of the fatigue, you sound like me, when I had a couple of girlfriends (mostly always women, cause I think these things have a lot to do with messed up hormones) who had "chronic fatigue syndrome".
Firstly, (and I'm just speaking for myself, cause I know you are far more empathetic, having gone though periods of fatigue yourself)
back then (before I was symptomatic with the hep and menopause) I just couldn't relate to a lot of fatigue, I was doing 8 to 12 mile hikes on the weekends, running 2 or 3 miles a day, busting weights for an hour 1/2 every other day, which is when I'd go to the gym...
I could bench out at 100 pounds which ain't bad for a girl...if I wasn't hiking on the weekends and during the week, I'd take long brisk bike rides (never could do mountain biking, that was difficult for me back then even when I was a big jock)
I had this lifestyle for over 25 years, I was a big "gym rat" back when it wasn't trendy. You see, I still liked to get high, and I found getting high on endorphins the best high of all. Once I'd started running, or biking, whatever, and those endorphins would start kicking in, it would put a smile on my face all day. If someone told me, I'll give you 5 million dollars, or you could have your high energy back, I'd take the high energy without thinking about it. Swear on my Aunt Sallie.
And at the risk of sounding horribly vain and shallow, I liked having a body that comes with all that. Fact, I'm probably still cashing checks on all that exercising now, because even though I can't do all that much these days, I'm really not that out of shape even now.
Where was I? lol....anyway, I had girlfriends who were suffering severe fatigue, and I would tell them to just do what I was doing, and they'd complain that they would if they could, but they just couldn't, the most they could manage were relatively short walks, and very mild yoga, or something like that.
I secretly thought, in all my arrogance, that they were just lazy, or had much of it in their minds, etc....Not accusing you of this, I just think that you might not have the firsthand knowledge of just not being able to do this high-energy exercising. Just not being able to do it, no matter how much you try.
And I guess going to these docs who intimate to me that my not being able to exercise and the fatigue and all of it, is maybe in my "head" (and not due to hep c, etc.) is my Karma Kick-back for being such an insensitive ninny to my poor girlfriends back then.
When I first started having this kind of fatigue, I thought I could "push through" it...I found it hard to run, but I'd push myself to walk fast, for longer periods, or brisk bike riding, and boy, would I pay for it.
I'd be practically bed-ridden for 3 or 4 days after. Sometimes a week. It would take me soooo long to come back from just exercising like that. But I loved it so much, that I would try time and time and time again, always with the same result.
My neighbors would have to come over and walk my dog and do my dishes, feed me, I swear, it was like I'd been beat with a baseball bat. After going to doc after doc, holistic people, spending a lot of money, I've just come to the conclusion, that between the hepatitis (some people, maybe mostly women because of the hormonal factor) and menopause, I just have to slow way down now.
I have to be able to *read* my body, sometimes I can take a light yoga class, sometimes I can't. Sometimes I can walk a little longer with my doggie, sometimes I can't. The first thing I can't do, is push myself harder then what my body can take, or I'm in big trouble. I guess having a low level infection this long, is taxing my immune system in fighting it off, and this is how it's playing out on me, sure it plays out differently on other people, but this is my case. Maybe the menopause too, I couldn't tell you how much is what, and neither can the docs. One doc things this, another doc thinks that.
That's why, after all of this, I'm willing to try treatment, knowing, that I might not get rid of this fatigue, and all the pitfalls. But I'm taking a risk that clearing up the virus might give me that ultimate energy (at least some of it back.) Though I'm not putting a lot into "expectations" a fools errand I know. Expectations can kick you in the a$$ big time, so I'm just hoping for "better." Even though I know there's a chance that I may be worse in the fatigue dept.
"Flare up" is a very fague term. When was your last viral load test and what was the result? How about your enzymes? Have you had your ALT, AST, GGT, AFP etc. tested lately? What about a CBC (complete blood panel) and a thyroid panel? When did you last have an ultrasound of your liver? And probably most important, have you ever had a biopsy and what was the result?
My suggestion is to have all of the above done, to help figure out what is going on. Everything but the biopsy are simple blood tests your doctor can routinely order. As to the biopsy, if you haven't had one in the last 3-5 years, you might want to get a more current one. But if for some reason you don't want a biopsy -- highly recommended if you're not going to treat -- then ask for a Fibrosure blood test, or possibly a "Fibroscan" if one becomes available near you soon.
Not treating is one thing, but if you're not going to treat, then you owe it to yourself to keep on top of things regarding your liver. The above tests are minimally what you need periodically, along with being seen by a liver specialist (hepatologist).
Oh! every time someone mentions riding horses, I get so envious! you sound like youre living in paradise! hope you feel better and better, and maybe soon, you can think of adopting me and Petunia? we don't eat much...I'll even clean out stalls, something I never minded doing, back when my younger sister had horses, quarter horses, Morgans.
Thanks so much for your insights. I am making an appt. with my new hepat dr. tomorrow.
I wanted to say to mremeet, please don't drink that beer or eat those iccky foods.
I should know my numbers, and stats. After my biopsy, and suggestions to start tx.- I thought I would try some extreme care first, and see if I could bring myself into normal range, and I just started feeling so much better.
I have felt so very lucky to have been symptom free for a good while.
It is so interesting that it hit me now. But I am inspired, and will get all my bloodwork done ASAP
Maya-Girl, is a small golden retriever :)
Just like to give you an alterative take to the fatigue, etc, you are feeling.
First, don't rush to the conclusion it is Hep C related. It may or may not be and very difficult, if not impossible, to prove either way.
Second, treatment helps some with fatigue and related symptons, but it doesn't others. And I'm talking successful treatment, SVR. Apparently it helped Mre, but I find my periodic bouts with fatigue identical to prior to treating and many other here have reported the same. In fact, my contention is that the majority of people treating succesfully are either as fatigued or even more fatigued after treating than before. This is based on two years of reading posts here, a recent survey posted and my personal experience. Some contend that these anecdotal reports aren't scientific and those that feel better after treatment are under-represented. I don't personally agree, but regardless, it's important that you know that even successful treatment is no guarantee your symptons will get better and there is a chance they will get worst.
I am by no means anti-treatment -- my point simply -- or let's say my opinion -- is not to treat because of symptons like fatigue, but treat because you have significant liver damage -- and you can define "significant" any way you're comfortable with. I define it as being at least stage 3. I say this because if you treat solely based on symptons of fatigue, you may end up like many here, still fatigued, or even more fatigued from the year or so of interferon.
Re: "Not accusing you of this, I just think that you might not have the firsthand knowledge of just not being able to do this high-energy exercising. Just not being able to do it, no matter how much you try."
Yes I have to admit that I've never been incapacitated to the extent where I just could not exercise no matter how much I wanted to...until I did treatment that is. ;-) But with that said, my fatigue would absolutely knock me out at times. If I didn't know about exercise, I could easily convince myself it was hopeless. So tired I'd doze off at work (which is a no no), have trouble driving, go somewhere in a daze and forget why I went there. At it's worst, it was awful. BUT! The way I eventually confronted my fatigue was to just force myself to get off the couch and get going with the aerobics. And man when I started out, it was almost impossible to put one foot in front of another. Even after I got in shape and it was my well worn routine, sitting on my mountain bike at the head of the trail - often I'd feel a sense of dread at getting started, not wanting to feel the pain and force myself to get going. But the magic of it is, is that within 3 minutes of the start, you start huffing and puffing and sweating. You don't feel good within that timeframe, your muscles ache, your heart rate soars, you struggle for air. And then, 7 minutes in your initial aerobic shock seems to plateau and you start to settle in to whatever level of intensity the day is going to bring (and it varies from day to day in a manner that isn't really predictable nor controllable). By 10 minutes the blood is flowing, the respiration has found it's tempo and the heart rate is stabilized about where you want it. After that, and during the remaining time I just start feeling goooooood. It's still hard work, and you really have to exert yourself - but you want to exert yourself, you're into it. The initial feeling of dread and reluctance is gone. The cobwebs are blown away, the intense gravitational pull the couch had just a few hours ago is but a distant memory. I want to pedal harder and faster and do more of this! And when the ride is over a serene calm comes over you. All your excess blood sugar is burned up, excess sodium and toxins have been sweated out. You feel a rush of euphoria, you're not tired at all - it's the quintessential runner's high. Not only are you not tired, you feel like you could conquer the world. This feeling persists throughout the remainder of the day and usually makes you sleep well that night too (although not always, the energy acually can keep you up at night too!).
Anyway, again I'm sure there are people who honest to goodness just cant do what I've suggested above. Obviously you're one of those people, and I don't doubt that for second. But on the other hand there are an awful lot of people out there who make excuses and/or use their HCV+ status as an excuse to avoid biting the bullet (often subconsciously because they honestly do not think they can "bite the bullet"). I once knew this guy several years ago from another online forum who used to lead the pack with complaints about fatigue and lethargy and how bad he felt all the time. I really felt for him, first because much of what he described happened to me too, and second because he honestly seemed to have a larger problem with it than anyone else. I suggested he try exercise like I had and he told me no way he just couldn't do it. Then a year or so after meeting him (online), there was a "hepper" get together picnic thing (which I did not attend). They posted pics of everyone that attended at the gathering. And there he was, the fatigue man - middle aged, way overweight, with a sugary soda in one hand, a plate loaded down with potato chips, two hotdogs and a hamburger on it, with a cigarette dangling out of his mouth. I mean COME ON. I thought to myself, no WONDER this guy felt like **** all the time. Let's face it, there are some people who just - don't - get - it. And I'm not attacking this particular man's choices, if that's the lifestyle he wants to live, that's his choice. But I thought it grossly disengenuous of him to endlessly complain of fatigue and health problems while not recognizing a possible connection with his fatigue and claimed inability to exercise with his age and lifestyle choices. Especially since he made no mention of them to anyone while discussing his fatigue related disability.
Anyway, again of course none of this is suggestive that you or anyone else here is in the same category. But it is something to think about and honestly ask yourself about if you're someone experiencing crushing fatigue and are at a loss of what to do about it.
Hi, I know exactly what you mean, and I think there is a continuum, or spectrum here, with people who really push themselves to do exersize because it will ultimately benefit them, benefit them greatly, and they have the DISCIPLINE to do it. People like you (and I hope you get there again soon wink wink - that means you mystermeat! lol) and people who just don't want to exercise and eat badly, smoke, drink, the whole enchilada. Hopefully, if they can at least cut down on one or two of those things, that's progress.
The famous psychiatrist Scott Peck said this kind of discipline is just another form of self-love, which I truly believe. Sometimes people who don't have this kind of discipline, or fail to even try to get develop it - don't have a lot of self-love, or self-regard, however you want to term it.
Talking about these things sounds really judgmental, and I hate to do that, cause I think nothing good comes out of making people feel bad about themselves, which is probably a big reason why they don't develop discipline in the first place. But I think there are some truths here, and maybe the guy you were talking about is a person who should value himself more, course I wouldn't know.
And I'm sure there are many that could force themselves to do more, even under extreme circumstances like treating, because even if you do just some walking, etc...it gets the circulation going and expels toxins, etc...probably overall, make you feel better because of that, and I think that's what you are talking about. If a person failed to exercise before treatment, I should think it would be that much harder for them to get their mind around it while treating, even though it's that important.
luckily, I had my dad (who has plenty of other problems, unrelated to taking good care of himself) for a role model (he'll be 100 in March and still rides a bike and manages to play golf) and I come from an active family. My mother is the type who didn't like to exercise, but she almost had to to keep up with the rest of us, and now she has bad arthritis, and she HAS to exercise, or she'd be bedridden.
But I just feel there are probably people like me, who, if they over-exercise, pay dearly for it. My big hope in life is that I will be able to exercise at even half the amount I used to, though I try not to long for it, cause it's depressing to me if I let it be. I now exercise at the absolute top of my ability, which consists of very light yoga, (not power yoga, that exerts you as much as mountain biking, lol) stretching and walks with my dog. That's all I can manage or I get sick, really, really, sick. I guess everyone knows what they can manage, if they are honest with themselves, and make themselves have the discipline to do it.
I read your comment, some of it sounds like me. I have flare - ups, although not too often. Sometimes it is hard for me to detect whether it is the HCV, or the dialysis (3 times a week), that knocks my a$$ down. I used to work out, did martial arts, mountain biked, until an amputation took alot of that away, not to mention the fatigue getting in the way also.
I have on observation about your comment, regarding your girlfriends and Karma. You did not understand why your girlfriends would not, or could not do what you knew would make them feel and look as good as you did. You found out later, why they did not have enough energy for exercise, let alone demanding exercise. God allows us all to experience all the trials we must go through in life. I am thankful for all of mine.
I want too wish you happines and joy in your life.....hopefully this will be your "Karma" im your future
Hep C for about 27 years. Did treatment once and failed, they said because of my weight. Recently going to Yale New Haven trying to get in a clinical trial for better drugs. Prognosis from biopsy, ultra sound, and MRI. Some cirrhosis, liver looks healthy, enzymes usually normal, have high iron so have to do phebotomy's every two months. Viral load went from 7,000,000 down to 900,0000 since phlebotomy's. Feel good most of the time but have periodic flare ups based on stress. They come like clockwork during the course of the year. Makes me crazy. I have been taking Wellbutrin which seems to make me feel much better and has lessened the sides of the flare ups. Stress seems to be the main contributor for flares. Hard to get away from it. I usually just try to function as much as possible when flares hit feels like I have the flu sometimes for weeks. Once it lasted for 3 months. I also take low dose Naltrexon which helps with the immune system. Not quite proven yet but I do it anyway.Thats just a small part of my story I'm sharing at this time. Good luck to all and keep the faith. Jimmy
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