Extreme Fatigue/Brain Fog

By pawspadding Latest Activity October 27, 2012 at 1:04 pm Views 1,554 Replies 24

pawspadding

I am Gen. 1a, Stage 3/4, treatment naive, 65 years old. 40+ years HCV. I am considering doing triple tx but weighing the pros and cons at this point. Frankly, I am very afraid of the sides of the meds because of my age.

Currently, I am experiencing near debilitating fatigue. This has me so stressed out that I am even MORE fatigued from that (stress). Of course, in stressing so much, I am exacerbating my already very sick liver. Body/mind connection. Having a hard time, really hard.

I have serious brain fog - forget things, a long list of problems with that. I've basically gotten to the point where I stay home and TRY to focus on everything I do when I do it, in hopes I'll remember it. I have checklists then don't trust that I've actually done what I've checked off (take meds, glaucoma drops, feed animals, etc.). I don't dare even drive anymore.

But this fatigue… overwhelming. Does this indicate that the virus is replicating faster now? I guess it does but your thoughts would be appreciated.

I will be seeing my doctor again in a few weeks, so we'll talk about all this. But another issue I'd like your input on is diet - for late stage fibrosis/early cirrhosis. The fear of decompensating is another huge issue.

My last biopsy in May was deemed "indadequate" due to fragmented tissue and an insufficient amount of samples. My new doctor sees no need for another biopsy - and I certainly don't want to go through that either. Enough can be gleaned from the tissue from that last one to indicate Stage 3/4 - "…bridging fibrosis, moderate to severe piecemeal necrosis…" - we know I'm late stage.

What can I do as far as diet and anything else to try to salvage what's left of my liver function? I also have steatosis, and it's not about my weight. I am extremely thin. I have been a sugar addict all my life, so that is stopping. And I smoke. Oh, I hate to admit that.

ANY help you can give me, please do. Thank you.

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Replies (24 replies)

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  • John Lavitt
    John LavittPA October 29, 2012 at 2:16 am   

    The extreme fatigue and brain fog sound really tough to go through, and I really want to help. I am sorry it has taken me a couple of days to reply to you. For your diet, fresh and natural foods are the best, avoiding processed foods with chemicals that will cause more strain on your liver. From a little research, I found out that with steatosis, vitamin and mineral supplements along with nutritional support may be useful. The relationship between HCV and steatosis in terms of fibrosis and disease progression is unclear.

    As for the fatigue, it is a combination of the treatment meds, your age range, and the liver damage. For the fatigue, ginseng might help. Panax ginseng is the most commonly used ginseng species for hepatitis C infection, according to the Arkansas Center for Mathematics and Science Education at the University of Central Arkansas. However, if you want to use Panax ginseng, talk to your HCV doctor first, particularly in light of the treatment meds you are on. Chinese herbal teas with ginseng and royal jelly could help with energy. I hope this is a positive start, and I wish you all the best in this difficult journey. At Hepatitis Connect, we are here for you and will do our best to help… John

  • pawspadding
    pawspadding October 29, 2012 at 10:45 am   

    Thanks, John. I am not on treatment yet. And that's another concern I have - if I feel like this now, what will I feel like on Interferon? Of course, no one can predict that, but it's very very worrisome.

    So I guess that this extreme fatigue is related to the extent of my liver damage, and all I can think of, is that I am getting a lot worse. More stress. Of course, my age factors in too. You didn't say what specific vitamins/supplements might be helpful - just the ginseng for fatigue, which I am very leery of taking without my doctor's approval.

    I remain terribly worried. Will see my doctor.

  • hepkat7
    hepkat7 October 30, 2012 at 4:18 am   

    Hi pawspadding I'm new here-not even introduced myself yet. Just wanted to say I know where you are coming from. Please try not to worry too much. The brain fog/fatugue/stress intolerance is complex and probably not indicative of degree of liver damage. Its more related to having a chronic infection and the immune response associated with it. New treatments are very very close on the horizon so try to destress a little and trust that very soon this virus will be wiped out from your body.
    Regards
    Paul (uk)

  • pawspadding
    pawspadding October 30, 2012 at 4:19 pm   

    Hi, HK - new here myself. Re. tx on the horizon, I don't feel that I can wait for that. Realistically, depending on so many factors, it could be 2015 by the time it's actually available to us, and by then I'm… 68 or close to it. Oh, how I wish I could wait, let me tell you. But Stage 3/4 and my age - nope. Too much stress for me to wonder how much farther my hcv is progressing toward de-compensation. I need to act now. Treat while nothing ELSE major is "wrong" with me. But much thanks for your reply. JH/USA

  • spartigus
    spartigus October 30, 2012 at 2:09 pm   

    Hey Paw

    I feel for your situation, and know this fatigue and brain fog all too well. It’s not just the virus working its magic it also the toxins that the liver can no longer filter out that now pass thru the blood/brain barrier, meaning toxins in the brain itself. With end stage liver disease ( ESLD) this is the natural progression of things.

    I also understand your hesitancy for treatment, I’m ten years younger than yourself and it’s an issue to be sure at 65. I really see only two opinions for you possibly three, and these were the same two options that I needed to weigh out recently. Actually I was left with one option it was just a matter of how to maximize that to gain the second option of treatment.

    All too often nutrition and diet are overlooked as a weapon against hepc and all the debilitating inflammatory fun that comes with it. Our enemy is not just the virus it’s the inflammation that it causes. If you can reduce the amount of inflammation in your body via nutrition, diet and supplements you can reduce/manage the toxins your already damaged liver needs to process.

    This is really nothing new, just overlooked too often, a nutrition plan totally focused on anti-inflammatory foods and there values does work. I’m living proof of that and it’s also backed up by all recognized medical professionals worldwide, if I didn’t follow these steps I would be a complete mess, in fact, when I get off the path I pay the price for days.

    Ok so what am I talking about here, well you need to hook up with a quality nutritionist or a good/trusted naturopath doctor. There needs to be a strip down process as if you had a mystery or un-diagnosed food allergies or celiac disease. So, all gluten, dairy, eggs and others will be out for about 30days. Once clean you will be a blank slate and at that point you can re-introduce food groups—-always—— with anti-inflammatory properties in mind.

    Here are some things nutrition has done for me, keep in mind I am the same stage as you 3-/-4 or even more advanced

    ~Brain fog—reduced approx. 50%
    ~Intestinal distress, Crones, totally gone (my gastro, is amazed.)
    ~Pain, inflammation, numbness in extremities. (Note: I have two herniated discs and three others bulging) the pain and inflammation has reduces by 60%..
    ~Fatigue, reduced by 50%
    ~ General cognitive, ++ 50%

    In general at one point I was homebound, the fatigue, brain-fog, pain, inflammation etc. had me beat,,,,,,, does that sound like you??.

    Paw, if you’re not currently treating, your job, and it is a full time job, is to manage the progression of ESLD. This is the reality when folks like you and I reach this compromised point with our liver and health. Nutrition is the foundation, from there we can branch out to specific supplements to enhance our efforts. Always with these above efforts is the responsible of an appropriate exercise and stretching routine.

    These things, diet and exercise have been told to us to the point we just glance over the notion. What I’m suggesting to you is a bit more than just the average suggestion to glance over and excuse. I have a total 100% confidence level that if you go all out with an anti-inflammatory nutrition plan and a comprehensive life style change with exercise and stretching your quality of life will increase by at least 50%. Hey….what’s that saying? Get busy living or get busy dyeing. You do have choices it’s just a matter of if your whiling to put in the work. Let me know if your interested, I can help with all of the above.

  • pawspadding
    pawspadding October 30, 2012 at 4:53 pm   

    Thank you so much for your comprehensive reply. I would definitely have tried or try the nutritional "clean up" and start over approach; however, I am WAY out in the middle of nowhere in the Western U.S.A. There is one small town near my, and as you can imagine, there are no naturopathic practitioners there. Far from it. I'm not able to drive the considerable distance to a big city to find a natural practitioner. I cannot do this type "treatment" without one one one guidance.

    I am taking some measures, though. Today I told my therapist I will NOT continue taking Clonazepam (generic Klonopin) because it's a long-acting, long half-life, benzo ~ SO bad for my liver at Stage 3/4. I'll be on Ativan, much more liver friendly. I have long standing anxiety/panic disorder, so I need some type of benzo. My doctor ran some labs today to check, among other things, ammonia levels to rule out or get an idea about early hepatic encephalopathy. I have cut out almost all sugar and am drinking good ole high quality (not tap) H20 - and lots of it. I'm drinking Green Machine since I don't eat veggies - I know, not good. Trying to get better - again, though, there is the issue of being in a Western DESERT state with no fresh veggies or produce - it's all trucked or flown in.

    All that said, I'm almost sure I'm going to go ahead and treat with the triple tx ~ at least give it a try. Interferon is a ridiculously "primitive" drug with its so many possible serious side effects, but I feel a certain sense of urgency when "listening" to my body, so if I can tolerate it and other sides of the ribavirin and whatever protease inhibitor is chosen (I HOPE Victrelis; I think Incivek would cause me to quit tx FAST), then I'm going to deal with the sides and pray for SVR. I will see my doctor next week - who is, by the way, a D.O., PhD and thus more "open" to herbs such as milk thistle, and in general a "body/mind" practitioner. I just started with him a couple months ago - new guy in town - and he's much more on my "wave-length" than the other doctors I've seen since being diagnosed 10 years ago. Small town = the less than competent doctors stay around; the new GOOD ones stay long enough to build up some time on their resumes then move on to bigger cities/higher pay.

    So I have to work with the cards I've been dealt. If I cannot tolerate the treatment or if my nasty virus doesn't respond appropriately, then … keep working on being healthy as I can and pray for the new all oral meds to come out before my liver de-compensates.

    I hope you can see that my choices are a bit more limited than if I lived in a metro area or even close to one. I WILL keep you advised and for SURE want to learn more about nutritional "good things" now - whether I'm doing triple therapy or not. Any websites?

    I am darn sure not going to "get busy dying" - I've been doing that long enough. I was waiting for the protease inhibitors to come out, which they did in May 2011, as I'm sure you know. Then I got absolutely freaked out about doing Interferon, THEN I did a masterful job of going into denial. Ha - like "I don't have HCV." The mind is a powerful thing. I'm past that denial. But in waiting, I got 10 years older and went from Stage 0 to Stage 3/4… no doubt things started going south when I reached age 60.)

    Thank you SO much!

  • hepkat7
    hepkat7 October 31, 2012 at 7:55 am   

    Hi paws yes I can understand your urgency and the various issues you face. Its a shame you aren't more central as there are all sorts of trials available that don't include the dreaded interferon. Spartigus has it right there-you need to be putting your effort into living a liver friendly life and aiming to reduce liver stress as much as possible. Diet, exercise, relaxation… they all help.
    Hope you get some anti viral treatment soon.
    Regards
    Paul

  • pawspadding
    pawspadding October 31, 2012 at 12:05 pm   

    Well, a new day a new direction here. I spent a lot of time last night chatting with a member of another forum about the ravages of triple tx, esp for someone my age.

    So I slept long and hard on all this. A huge part of my urgency is my high anxiety because (and this is just unreal), the biopsy done in May was deemed inadequate as far as number of strands and the strands obtained being fragmented. They gave me NO sedation - nothing, and that punch was so painful I am sure I passed out momentarily -and I bet I jumped. But even with the inferior samples, the pathologists at UCSD, best of the best, were able to get "close" to a stage, but they wouldn't confirm it without another biopsy being done with the correct number of samples and as little fragmentation as possible. Yep, my local small town hospital totally botched it. TOTALLY.

    Current doc, who I see next week, and who is in a nearby city (hence, uses a different hospital), doesn't seem concerned about the exact, to the decimal point, staging. I'm a late Stage 3 or early Stage 4, and that's good enough for him. I respect his opinion, and clinically, I'm sure he's right. HOWEVER, for someone like me, this is causing the majority of my stress. This is the source of so much anxiety. Am I cirrhotic or not? I need to know exactly what stage I am. Only then can I make a decision. I could be into say 4.2 - if so, then treatment is warranted asap. If I'm 3.8 or something, I should have a bit of time before the dread "de-compensation" occurs.

    My understanding is that the new all orals will or should be available in early 2014. I'm on a couple of other forums, and they really are on top of what's going on in that regard. I know - often these new drug regimens aren't available as soon as "we" think, but there's a real fire under getting this one out there - because of the literally billions of $$$ to be made.

    So that's where I am today with this - and I feel like it's what I need to do. I'll have another biopsy done, at a CIVILIZED hospital where I'll get some mild sedation (here, they won't do ANY sedation for ANY biopsy except bone marrow - scary, isn't it?). I will then know exactly how far the virus has progressed. I will then be able to make a decision having gotten every single bit of information that can be gleaned. Right now, I am missing what is, to me, the most important piece - an accurate biopsy report based on a biopsy performed correctly.

    So ~~ would you (or anyone) give me some website links maybe to help with how to stay as healthy as I can? Drink lots of water, exercise, low protein?, … whatever you may have to offer and

    I THANK YOU.

  • hepkat7
    hepkat7 October 31, 2012 at 12:29 pm   

    Hi paws the internet is full of advice-just type in something like 'love your liver'. Loads of stuff there. I know you are keen on a biopsy but do you have any blood readings to look at-in particular platelet levels, albumen, INR. I was diagnosed with cirrhosis 3yrs ago and my liver is still compensated. As yet I have no varices or ascites but my platelets are falling. Just wondered where you was in terms of tests other than biopsies as these other tests can build a fuller picture of where your liver is.
    Im from the UK and the scoring system is different here so am unsure of what stage 3/4 means in terms of histology.
    Stay well mate.

  • pawspadding
    pawspadding October 31, 2012 at 1:37 pm   

    Yes, I have tons of labs with all the pertinent "stuff" having been tested, as well as maybe five ultra/sounds and three CT scans from the past ten years - keep copies of everything, and of course, the doc takes the whole picture into account. My platelets went from 180 to 142 then to 162 in the past year, so I'm okay there - not great, but okay. Since I had labs drawn yesterday, I'll find out next week when I see the doc. how it all looks now - as well as findings of the ultrasound (done yesterday). So yes, everything is being considered and factored in.

    Yes, different scoring systems. Stage 3 basically means bridging fibrosis. There are the ten decimal points within each stage. Stage 4 is cirrhosis. Then cirrhosis has its own set of scores (as you no doubt know). The messed up bx was analyzed by the expert pathologists at U. of California, San Diego. I had gone to one of the top hepatologists in the U.S. - at his Vegas satellite clinic (main and now only clinic is in San Diego) - when it was obvious the locals were less than competent. Unfortunately, that clinic was closed. Vegas was "doable" as far as travel, but it was difficult to make that trip for various reasons. But that doesn't matter now - it's not an option. But at least his pathologists were given my bx slides to review before I could no longer continue being his patient. Grateful for that.

    Anyway, this gets complicated and I'm confused, but the Stages 1-4 are the Metavir scoring system. The Knodell scoring system is more complex, and thus more accurate. The UCSD pathologists used that one and put me at 7 out of the 18 points in the range and stated that they were dealing with a "suboptimal fragmented liver biopsy" and the bridging fibrosis was "possibly bordering on cirrhosis."

    So that explains my doctor's assessment of Stage 3/4 on the Metavir scale. BUT - it's a big difference between bridging fibrosis (3) and cirrhosis (4) as far as "urgency" in treating, so I have to do what I have to do. Find out EXACTLY what the heck is going on - the numbers, the accurate numbers - stage and grade - on whatever scoring system is used.

    What a mess, eh? The local group (hep doctor, radiologist, and pathologist) really let me down - did a bad job. And that was six months ago. I sure don't want to get another biopsy done, but for my peace of mind, I need to. Not so "keen" on it actually - lol - but know that it's the only thing that will calm down my high anxiety, give me some peace of mind. I have to know what stage/grade I am. Only a biopsy will give me that.

    Sorry for my verbosity. Can't help it - e

  • hepkat7
    hepkat7 October 31, 2012 at 2:02 pm   

    Ah the platelets are good. Yes I would also say you are precirrhotic. If you develop a degree of cirrhosis you will see the platelets start to fall below the cut off of normal at 150. The blood flows well through your liver. If I had readings like that I would be celebrating. Talking of biopsies-would it be at all possible for you to get a fibroscan done, its certainly easier than a biopsy, any reading over 12.5kp and you have confirmed cirrhosis. I understand the anxiety as I have massive amounts of anxiety myself, sometimes all you can do is talk to others in the same predicament.

  • wildflower5285
    wildflower5285 December 31, 2012 at 8:49 am   
    Edited December 31, 2012 at 8:51 am by wildflower5285

    I contracted hep C around 2005-2006 and it has already progressed to cirrhosis (determined with a liver biopsy and MRI). Right now, I am suffering with extreme all-over body itching (especially at night). It is unbearable. I have an appointment with my gastroenterologist today to see what's going on and I am so afraid that he is going to say my liver is failing. I have had this itching for a couple of weeks. I also have what they call "brain fog" - can't remember things, people tell me I repeat what I have already told them. I am a 54-year old woman but have a 10-year old son and am not ready to "check out" just yet. My doctor called me after my last blood test about a month ago and said that my platelet count was low and that I had a "slightly elevated" alpha feta protein. Can anyone give me some insight into my situation? I am very afraid right now, especially with worsening of the brain fog and now the new all-over body itching (even on the soles of my feet and palms of my hands). It is so bad that I scratch myself until I bleed. Any feedback would be very helpful. Thank you.

  • hepkat7
    hepkat7 January 1, 2013 at 11:28 am   

    Hi wildflower am glad you have posted on the forum. I take it that you haven't treated the hep c yet ? It's never a great time to be told you have cirrhosis but things are now better than they've ever been for us cirrhotics. New treatments that are more effective and easier to tolerate are very close indeed and if you are still positive for the virus am sure it won't be for long. There is now fresh evidence that achieving an SVR for people with advanced disease will improve your overall chances of developing some of the complications that can happen with liver disease.Perhaps you can get some of your blood results and post them for other members to have a look at.l also have cirrhosis and have done for about 4yrs so I am quite familiar with your symptoms-low platelets, elevated afp to name but a few. If you have cirrhosis its important to have 6mnthly ultrasound scans and try to live as healthily as possible in order to preserve your liver function.
    There are many people in your position so you are not alone. Try to ensure that you are well hydrated and where possible manage your stress levels as best you can. Good luck and keep us up to date.
    Hepkat7. (Paul)

  • wildflower5285
    wildflower5285 January 1, 2013 at 5:24 pm   
    Edited January 1, 2013 at 5:26 pm by wildflower5285

    Thanks for replying to my post hepkat - it made me feel much better. I visited the doctor for itching and got a prescription that really helped (hydroxyzine) but makes me VERY sleepy. Just today, I got into an argument with my son because I was going to pick up him, his wife, and my grandchildren but feel asleep and didn't wake up until 5 hours later. So now he is mad at me. I told him to get educated about hep and cirrhosis - we ended up having an argument. Funny u should bring up the fact that I should reduce my stress levels lol. I am just going to focus on taking care of myself and my youngest son who is only 10 and hope that the older ones will understand in time and with some education about the disease. Right now, I am only seeing a gastroenterologist - do u think I should also see a hepatologist? I know they are also gastros but with their speciality being liver diseases. What's your take on it? You sound very knowledgeable on the subject. Again, thanks SO much for your feedback. Wildflower5285

  • hepkat7
    hepkat7 January 1, 2013 at 5:41 pm   

    You're very welcome wildflower I suppose a hepatologist would be the preferred choice but overall for me it's about the quality of the treatment centre and the nature of the specialist/ patient relationship. I hope you are able to educate the people in your life about the nature of your illness and its physical and emotional impact. The last thing you need is more stress and inadequate support.
    I wish you the best for this coming year.

    Take care
    Hk7

  • pawspadding
    pawspadding October 31, 2012 at 2:13 pm   

    I will ask the doc about a fibroscan - I mentioned it when I saw him about six weeks ago, but somehow it got lost in the discussion - I guess because he said no need for another bx. I hope they have the "equipment" there - in that city's hospital. Thanks for mentioning that - great idea! My health coverage takes care of literally everything (except a $150 co-pay) - I have MediCare, which you're probably familiar with, but best of all, TriCare is my secondary - that's from my husband being retired military - and I his dependent. So cost doesn't matter. I am SO fortunate. So many in this country have no healthcare coverage - "Obamacare" not in full effect yet. You in the UK are lucky with your socialized medicine system - but I know, you pay ENORMOUS taxes for that.

    Yes, the 142 platelet count was heading downward, but the next lab, two months later, showed it as 162. We'll see what yesterday's labs show. I'll let you know.

    Chrys

  • hepkat7
    hepkat7 October 31, 2012 at 3:24 pm   

    Platelets tend to oscillate over tests but yours are fine at the moment. Although this is a frightening journey we are in a better position than those who don't know they have the virus. You are being studied and monitored by the best doctors around hopefully-thank god you're not in Pakistan or India or one of loads of countries where medicine is simply too costly ! It wont be too long before Gilead submit for approval and usually about 6mnths before approval there is often expanded/compassionate access for those in great need.

    Think on the bright side Chrys, anxiety and catastrophising will have you believe the show is over, but it isn't-especially so in your case.
    Stay well and keep us posted.
    Paul

  • pawspadding
    pawspadding October 31, 2012 at 3:56 pm   

    Thanks, Paul. Yes, yes, we are certainly among the fortunate who know we have this thing, meaning we can address it, and who have access to excellent affordable healthcare. This virus is a planetary pandemic; I'm sure of it. So yes, count my blessings. There are many. Catastrophic thinking indeed makes me crazy, and it an old habit that needs to GO AWAY.

    I'm happy that in the past 24 hours I've been able to settle down enough to understand that InterFEARon is not for me. It's the reason I haven't treated - over this past decade. For someone of my "nature" - INF could be a total disaster emotionally. Best I do everything in my power to stay healthy and stay away from the current triple tx. The day those new all orals are out will be day of great celebration for so many of us. You'll be doing them, right? They work for cirrhotics too?

    Thank you for your time and sage advice and helpful information.
    Chrys

  • hepkat7
    hepkat7 October 31, 2012 at 4:18 pm   

    Yes we will be celebrating Chrys-I will be doing the inf free meds in next few months hopefully. I've done treatment twice and understand and respect your thinking about interferon. Personally I don't feel robust enough to wrestle with a third round of interferon.
    Take care
    Paul

  • John Lavitt
    John LavittPA November 9, 2012 at 7:45 pm   

    The help, support and expertise you have been offering to Pawspadding is just awesome! It is exactly what this site should be about and I thank you!

  • hepkat7
    hepkat7 November 11, 2012 at 11:53 am   

    It would be good to see the community expand and become more active, perhaps it could be developed to offer more than the usual discussions-eg comprehensive uptodate information…am sure there are many things that could be added to improve the traffic.
    Cheers
    hk7

  • John Lavitt
    John LavittPA November 11, 2012 at 3:17 pm   

    Working on this every day, Hepkat, and hopefully there will be a sea change in the coming year as the community grows!

  • hepkat7
    hepkat7 November 11, 2012 at 4:22 pm   

    Good stuff John ! Channelling the enormous amount of ever changing resources into the forum would be a great idea-news feeds, abstracts,glossaries etc etc. The sky's the limit really.

  • pawspadding
    pawspadding October 31, 2012 at 4:44 pm   

    We're all in this together, and I wish you the BEST - to include that you get those new meds soon. That's wonderful! I'm not robust enough to wrestle with ONE round of interferon. The friend I mentioned on the other forum who strongly convinced me of that last night is a friend indeed. She's younger than I am and 12 weeks of it almost killed her. She had to stop. So, we pray and hope ~ for everyone in this world who is dealing with this - and for those who don't know they have it to find out. It's been a long time coming…
    Catch ya later~~ Chrys, AZ, USA