Fatigue What is it for You?

[Forseegood]

Hi, another one of those obsessive threads with a question that has probably been answered over and over before...but I just would like to know what your fatigue levels were before treatment?, and post treatment? Was it improved by the treatment?...or has it worsened?

Maybe even during treatment if youre up for it...I know it's asking a lot, but any input on this subject would be appreciated...maybe some of you are too fatigued to answer (bad joke.) but thanks for answering with whatever information you have...Be well and have a great weekend!

[snowbyrd]

I can't anser about fatige post tx because I'm still treating. Pre tx I was exhausted all the time I would say probably the last 7 years. I have no liver damage but i had all the aches and pains that went along with hepc. I thought i was loosing my mind until i was finally diagnosed last Aug. I use to work full time 9 hours a day and would just be so tired and aching all the time. I'm now in week 9 of treatment and i think i have left the house once a week to go to the clinic. I barely leave the couch and when i do it;s to go to bed. I have made the decision to stop tx at week 16 due to bad sx, bad bloodwork and the overwelming exhaustion. I was undetectable as of week 4. The exhaustion is killing me. I can't drive because i'm afraid i will fall asleep or pass out, which does happen but thank god not while driving. I hope to heck it is not like this post tx. I want my life back.

[Lilla]

I am in middle of treatment also.  I started tx on Feb.5, 07.  Prior to treatment I cannot say I was extremely fatigued. I've never been a "high" energy person...I've always been able to "chill" out and relax at any time.  While in treatment I do have fatigue.  What bothers me the most is that I feel fine and then all of a sudden "wham", it feels like I've hit a concrete wall. If I rest, I can regain.   My emotions run up and down at any time, but I am blaming that in part to my doctor dilemna I'm going thru.  I was told that I do have liver fibrosis, but due to the testing, there is room for error.  I am a geno 2b; told 24 weeks or 16 for tx; if the fatigue that I've had is the worst, I can live with that. I take it day by day.  Good luck to you.

[nygirl7]

I'm only 6 weeks post but I feel SO MUCH BETTER.  As you know I worked all along and some days it was purely HELL but I made it somehow.

Now (even though I still and always WILL hate getting up) I am able to and work fine and then have energy for the gym afterwards.

It's pretty cool!

Now I Just want my skin and my hair BACK hahaha.

I alwasy want something my friend ;)

[Forseegood]

it's so funny that you mentioned that, was talking to my *sleeping psychiatrist* the other day, and I was telling him that one of the reasons I was apprehensive about treatment is losing my hair....which has always been kind of my *signature* but that I'm working on this issue as hard as I can...

I thought he was going to poo poo me out of the room, and tell me THAT should be the least of my worries! blah blah blah...but noooo, he kind of patted his own, pretty good head of hair for an older guy (in his 70s)...and said that yes, he could see how traumatic it would be to lose my hair, but that I should look at the bigger picture, etc etc...I was kind of taken aback....but then I thought, well, he's a psychiatrist from LA for crissakes, HA HA HA HA!

Thanks for telling me the before and after guys, and what youre able to do on treatment, beforehand, and after, and during, appreciate all the answers...

[cajunlady]

Hi There,

Before tx, I was exhausted all the time, even when I would get plenty of sleep.

During tx, I was very tired at the beginning and then after about the 12 week mark I would have the good, bad and ugly days.  The good were real good, the bad were doable and the ugly, well, UGLY. When I did have energy to try and exercise, if I did, then I was totally exhausted. So, it was hard for me to even try on those days, who wants to screw up a perfectly good day/ so far and few between at that point of tx. It is good to try though, and maybe your body will let you excercise and not get exhausted.  Everyone is different

Post tx, That my friend was fast for me, I noticed a quick change in my focus and thought pattern right away and within 3-4 weeks was not getting as tired anymore.

Today, I get Mental fatigue, from my hubby's situation, but not physical.  Physically, I am roller skating 1-2 times a week. And, I power walk 1-2 miles about 3 times a week.  My muscles were sore and stiff at the beginning, my muscles felt like they were almost liquified during tx. They do okay today.

Have a great weekend

Cajun

[pigeonca]

Before diagnosis I had been experiencing a need for more sleep than usual and just figured that it had something to do with my advancing age, even though my dad had always told me that older folks need less sleep.  "I must be different," I thought and paid it little mind.  I used to sleep 5 or 6 hours a night six days a week and then caught up on Sundays with a good 10-12 hour crash.  Hopefully this pattern will return, because I hate to waste time in a state of lethargy.  But for the past several years I've needed 8 to 9 hours of daily sleep, and on tx even more than that.  

The first month or six weeks of tx I basically slept 14 to 16 hours a day (including naps) and didn't get much done.  Now I'm 11 shots into tx, with an UND at week 4, and I'm finding I need less sleep than at the start, perhaps 11 or 12 hours a day incl. naps.  That's quite an improvement.  The main thing about sleep on tx for me is that I can't stay asleep for any extended period of time.  Every hour or two I wake up, then roll over and go back to dreamland, but I can feel the side effects of the lack of REM sleep.  Sometimes - because I do live in California where it's legal - I smoke a few puffs of medical maryjane.  That will knock me out for two or three hours, and I really appreciate it.

[MissMiss]

At almost 7 months post and undetectable, I still need 9-11 hours of sleep.  It's the pits.  I'm back to work, not as a custodian but working with the young ones and only four days a week.  Right now, that is about all I think I can handle.  By thursday I am dragging every limb I have.  

My legs are also still hurting pretty bad.  I think I'm going to have to ask for a handicap parking for awhile longer.  My dream is I go to the doc, he says "Oh, I know what's wrong!" and Poof!  I'm all better.  But then I wake up, lol.

I feel exhausted just talking about it.  Zzzzzzzzz

miss

[GoofyDad]

Uhhhh.... Needing to switch hands?

Answering the same dang questions over and over?

Nahhhh. Just kidding. I don't know that I'm a fair example because I had big life stresses and cirrhosis leading up to treatment, so I was pretty ragged but did excercise vigorously several times a week.

I was OK on treatment. Dragging butt and couldn't climb stairs, but I was happy to throw baseball with the kid and play putt-putt golf and stuff. I took 3 day weekends from work many weeks.

Post tx I've had trouble getting back into the excercise rythmn. That said - I'm doing OK on other fronts. Working alot and not sleeping enough. Hmmm.. typing this with both hands gives me an idea......    

[orphanedhawk]

Before tx I thought fatique was when I was traveling and got so exhausted  I could fall asleep anywhere including hard floors. That is not fatigue.
   I was tired before tx but able to exercise and function although needing some rest time in the day.I have my good days and bad days, more or less energy but never a lot.
    Now, I am lying down and think about exercise. I think about raising my arm, lowering my arm. Next, I think about raising and lowering my other arm. Next, oh, I forgot where I was, I think, its rest time.
   OR, I think I'm hungry. I think I'll eat. I think I'll lay here and think about eating.
Welcome to my world!  And tomorrow I get to be a human dart board again. Isn't tx fun?

[SandyBreeze]

I cannot speak to treatment or post treatment - - only to having Hep C (and not knowing it for years! LOL)  

I have been diagnosed quite recently.  Possibly contracted virus - 1983/1984 (or during '86 receiving blood products during an emergency treatment).  Just had a consult yesterday with my liver doctor and was told 0 - 1 on biopsy with last VL @ 21,000.  (Moe bloood tests were taken today and a LOT to report and will do so in a day or two.)  He spent a good part of an hour with me! :)  Now, I understand clearly why he wanted me to undergo all these tests and visit with his staff first (LOL) - - he is QUITE thorough and attentive!)

Fatigue?  I'm an energetic 41 year old that actually, although not a triathlete or bi-athlete, do train with friends that are!  Not in running (becuase I do NOT run, nor have I ever had the desire - I mean I have a little, but not much) but DO swim and cycle.  I do not keep up on their bike mileage (although LOVE trying) but do keep up and WELL swim distance and time! :)

I experienced fatigue for two weeks recently and was QUITE unhappy! :(
- - which led me to my doctor discovering my Hep C!!!!   Fortunately, the fatigue resolved and was most likely due to a 'bug' along with a heavy company travel schedule the two months preceding and nothing to do with Hep C.  

I have not had any of the Hep C symptoms, nor fatigue that I've read about; although, I understand it is not unusual to NOT experience any symptoms with this virus.

There is NOT a doubt... not one doubt in my mind, that if I was plagued with fatiuge that I would NOT hesitate for an instance to treat... (this is FOR ME ONLY).. And I mean today's current treatment.  If my quality of life was affected by FATIGUE from Hep C, I would do EVERYTHING possible to rid myself of the virus; whether my biopsy showed 0 or 4!  That as you all say here - -  is MY HUMBLE OPINION (decision).  I would risk the post treatment sides.  My energy is TOO much a part of who I am and my life.

There are excellent responses in this thread.  There are no correct or incorrect responses.   Only we, individually, can determine our threshold to fatigue.  

Will be getting back to the members in more details in a couple of days regarding my consult yesterday.... and would really appreciate opinions on same.

[FL_Gal]

Hawk, that is too funny!

You hit the nail right on the head!!!

[rosebud57]

before, chronically tired but very functional worked & school  busy family life. harder to get up early over time, have flexible hours at job, just accomodated the schedule to my abilities. but i was a night owl too. din't know what was going on. had a lot of aches & pains. actually how i found hcv was trying to jump into study for arthritis, which is what i thought some of the sx might be.

during tx , as drugs built up over several weeks became weaker, effort to shower dress and eat, be ready to lay down again. get up some work reduced schedule. cook,wash dishes lay down again, watch t.v. sleep if i could. mostly not.

further down, about 4 weeks. couldn't work any  more energy spent just showering eating and dressing. thats when they said to take procrit. i had the meds, but waited for direction to take them. i could appreciate their forsight that i should have them available when needed. that was Dec. 26. i took weekly, now every other week. feel much better, still not good enough for work but i have a lot going on with school right now.

can't say much beyond that. all along frequent headaches, frontal. annoying. helps to do yoga stretches when sleep doesn't find me late at night. 10 minutes of stretching and body/mind feels fatigue or relaxed enough to sleep.
good luck

[orphanedhawk]

  I'm glad when people catch my humor. Sometimes I lose them, and myself, too ;)

[poetic_wax]

LOL, for me fatigue means never having to say you're sorry. Does that make sense to anyone?

[GoofyDad]

The big question for anyone factoring fatigue into the treat/wait equation is whether the fatigue is in fact Hep related, and will it be eased through treatment.

[jmjm530]

Besides not getting seen on time, fatigue is the number one complaint many doctors hear from their patients. I remember asking my previous hepatologist if treatment would help my fatigue. As many of us do, I processed his answer the way I wanted to, but not only did he not give guarantees, all he basically said was that many Hep C patients complain of fatigue. I think if you read through our archives you'll find that MORE people complain of fatigue after treatment than before. This then one would have to assume would be tretment (interferon) related fatigue. As Bobby pointed out recently, treatment can sometimes be like adding one thing on top of another. Lots of valid reasons to treat, but those treating because of fatigue might be setting themself up for a disappointment -- or worse, may end up more fatigued than when they started. In cases of more advanced liver disease, it's quite possible that fatigue is helped more as the liver heals. But in these cases, treatment is usually more of a necessity than a choice.

-- Jim

[honey11]

I didn't seem to notice the fatigue that many complain of from hep c and after tx,,,,all still is ok.  What does cause fatigue when you have hep?

[orphanedhawk]

  I'm sure someone else here can answer your question with more medical accuracy then I. However, I'll give your my view. I think its like when you get the flu. You're tired because your body is busy fighting off the bug.  The hep c in our blood is being poisoned by interferon. The side effect is, we are exhausted.   Personally, I wonder how much it has to do with our blood cell fluctuation. I felt so exhausted and blue when my white blood cells plummetted. I don't like the neupogen but as well as upping my wbc, it gives my energy and attitude a boost.
  I've found the amount of fatigue does vary.

[susan400]

This question for me is a big question mark.  I've been in this whole treatment, getting over treatment cycle for the past 10 years, so, it's difficult to say how accurate my symptoms are, but here goes.  I usually have a bunch of energy when I first stop treatment, the first few weeks, but (and I think it's because I've never-ever cleared), it doesn't take long before the muscle aches and fatigue come right back on.  The only difference for me, right now and 9 mon. ago when I was on treatment (as far as the energy goes), is that I'm able to exercise for a longer period of time (i.e. when I was on treatment, I did about 5-20 min. at a time on the treadmill) and off treatment (30-50 min. at a time on the treadmill and lifting some hand-held weights and about 10 min. on the stationary bike).  But, I still suffer for 4-5 days afterwords, anytime I do something involved.  For example: Last night I went to a Christian concert at church and didn't get home until later than usual and got to bed around midnight (late for me), woke up at 4 am, fell back to sleep about 4:15 and woke up again at around 6:15.  Left home this morning to do volunteer work at the nursing home.  That ended at 11 am and when I got home, I was ready to pass out.  I spent about 3+ hours laying on the couch hardly able to move.  Last time, prior to treatment, I was like this as well.  During treatment, I had about 3 hrs a day that were really functional.  So, there's not a lot of difference in my ability to function.   Now, the above activity that I did last night at the concert, I didn't do ANYTHING else all day long, prior to the concert (no exercising), except getting ready to go.  To a normal person, in my opinion, doing an activity that only takes up about 4-5 hrs. a day (where I was sitting for a lot of it), shouldn't wipe me out so much.  But, maybe I'm expecting to be something that isn't normal.  What's normal for a 45 yr old person?  Don't most normal 45 yr. old still go out and work in at least a 40 hr or more a week job?  I don't know anymore, like I said, it's been a while.

Susan

[goldyn]

for the last 7 years before tx i started  to notice my enery level going, went to get a checkup they scheduled me for blood work didnt do it after three more years finally took the blood test and found out a rise in alt at that time was 50, engough for the doc to test for hepc, well went 3 more years with energy getting lower also always experienced frontal headaches, seemed to have more frequent ones, also when i would walk a while would feel pain in my liver, had 2nd bx went 1 to a 2, and from 1,000,000 to 15,000,000 in 3 years time made the choice to treat, really noticed a different good feeling after 6 weeks on tx, after that around 12 started to get more tired  after 24 was ruff last 3 months were hell still worked with preschool kids 30 hours a week plus delt with the 5 of my own but was exhuasted, 4 weeks post started feeling better, dont not have those frontal headaches, now do not have the liver pain after exercise, now can work a lot longer and harder than i could for a long time....do have high blood pressure now been on meds since tx has been over had 31/2 month post and still clear thank God...I notice a change for the better in energy level....

[Forseegood]

thank you all so much for your stories...I hope many of the new patients can gather some good info from them too...looks like Goldyn and I are really alike in our stories to a certain point, hopefully for me I can end up like her...

[Forseegood]

them more the better if you can...

[Cindy10]

I starting getting fatigue when I was about 30 years old. I was anemic on and off for years so the doctors said it was that. I worked, excercised and did everything the same but I always had fatigue. Some poeple would say its age, but come on 30? Anyway I just excepted that this is a way of life. When I was 38 I was dx with HCV, and the dr said it was quite possible my anemia, fatigue was related to the HCV but would never really know, could be from stress, high stress job and family ;-). I put off tx for 3 years and finally started 22 weeks ago.

To tell you the truth, the fatigue I feel on tx is similar to what I felt before. I am still anemic so maybe its that, who knows. I decided to treat to get rid of the virus while I was still somewhat young and I did not want to wait for it to progress (already had it 20+ years), but if by some slim chance my fatigue goes away as well, it would be a major plus. Time will tell!

[ladybug52]

This is a good question. I'm not sure that I can answer because my energy levels fluctuate so much. Obviously, I'm lucky since I can still work and function, but sometimes I feel overwhelmed by the stress fatigue causes. I want to quit work, quit tx and leave home. But after I get a good night's sleep, my perspective changes.
Being ADHD, I've always had more energy than I could put to good use--hence lots of time to get in trouble! Now that I'm more mature, I can channel my energy into something constructive, like hang around the forum instead of getting anything else done!

[friole]

Foresee, I don't know how you differentiate from winding down as you age and fatique from hep C.  I do know fatique is one of the primary symptoms people say they have, but so many are in mid 50s.  I was either non-symptomatic or maybe tired more than I should be -- or maybe not.  I do know I never had any fatique issues with menopause, and I have heard some here say they have.  I don't recall any of that at all.

Now about 7 months after treatment, I think I feel about the same as I did before -- that is, I still don't want to do anything much after work.  I am active all day long on my days off - but I was before tx too.  Since I didn't clear, maybe that is why I feel the same (?)

[triggertime]

Great Q. Thanx 4 askin it. My fatiuge has been w/ me along time before I was even DX w/hepC. Looking back I can c how it slowly increased in my adult life. Last tx I was overwhelmed w/ it. It made me pretty depressed, which made me pretty fatigued, which made me depressed....and so off we go.
When I started my Pegintron/riba, Fatigue TOOK OVER. Fati and depres filled my being. I almost quit tx after a few weeks, but my wife kept me strong. So tired I didnt have the energy to chew a pbj sandwich. Ater tx I gradually started feeling young again. I went fishin w/ my wife and boys. Went camping w/ my wife. The late great James Brown said it best "I FEEL GOOD" nana nana nana nah.
6 mos later GI said start Infergen/riba tx. When I heard that all my energy left immediately. Mid-way through 2tx now. So tired I dont like to leave the house. I hate 4 ppl to c me like this. Sometimes I am 2 tired to answer the phone. Back into that old fati/depres/fati/depres syndrom (syndrome) again. 1st tx was a cake walk compared to this.
I found this sight a few days ago, I am hooked. I hope 2 chat w/ as many hepCers as possible untill u r no longer posting and out Livin the good life. God bless u all.

keepda faith and dont forget to giggle,

triggertime




triggertime

[Forseegood]

Hey Triggertime, welcome to the board, you sound like a great guy!

For everyone who posted, a big thank you, I know many will get something from this thread!

[triggertime]

Thank you, Thank you very much.  I havent been called a great guy in long time. Ahhh!  just the sound of those words have a ring to it, doncha think?

4c, ive been here since 03/09. Ive read some of your commentary. I always take something w/ me from your words your commentary

keepda faith and dont forget to giggle,

triggertime

[triggertime]

Thank you, Thank you very much.  I havent been called a great guy in long time. Ahhh!  just the sound of those words have a ring to it, doncha think?

4c, ive been here since 03/09. Ive read some of your commentary. I always take something w/ me from your words your commentary

keepda faith and dont forget to giggle,

triggertime