VERY IMPORTANT Please help regarding fatigue...THX

Discussion in 'Fibromyalgia Main Forum' started by TerryS, Feb 2, 2007.

  1. TerryS

    TerryS Member

    Hi Everyone! I have another very important question this time regarding fatigue.

    I have been suffering from bouts of fatigue for the last couple of years and have been unable to work since last August 2006 due to the incredible fatigue and exhaustion.

    I usually wake up feeling halfway decent and can get some things done around the house, BUT, after being awake for about 4 hours, I suddenly feel very ill, kind of shaky and weak, lightheaded, and basically exhausted. (Feels a little like you do when you get hit with the flu). It hits me VERY suddenly and it happens virtually EVERY DAY. You could almost set your watch by it.

    I then have to lie down for a few hours. About half the time, I can get up 3 hours or so later and make a simple dinner...but sometimes I just have to lie there the rest of the day.

    I started having pain in September and have since been diagnosed with fibromyalgia, as well as primary biliary cirrhosis, have a positive ANA, positive anti-smooth muscle, and show positive for chronic/reactivated Epstein Barr virus. (Negative for lupus right now).

    Other than fatigue, I also have symptoms of excruciating pain in my extremities, incredible itching (especially my feet), and dizzy spells which sometimes go on for hours. My skin has gone through drastic changes in the past few months. I began to have a light pink color on my cheeks a few months ago which has now increased to bright pink and now also is on my forehead. The palms of my hands are now red and splotchy.

    I have just been approved for long-term disability, but the disability insurance company wants a definite "diagnosis" from either my liver specialist or rheumatologist as to exactly which diagnosis is actualy causing my disabling fatigue. Problem is that none of my doctors know for sure where the fatigue is originating from...I mean, how can one say for sure??? There seem to be a lot of different things going on in my system. FM, PBC, EBV all cause fatigue.

    My question is this: DOES ANYONE ELSE HAVE FATIGUE THAT BEHAVES LIKE MINE??? Does anyone else feel fine one minute and then very suddenly like you will collapse???

    I never leave home by myself anymore because it's impossible to know for certain if I'll be able to make it home. My daughter and I have (on more than one occassion) been in the middle of Wal-Mart or sitting in a restaurant when she will suddenly hear me say "we have to leave...NOW".

    Any information you can share with me will be very helpful in assisting my GI doc in either connecting the fatigue to PBC or assuming it is from the fibromyalgia or Epstein Barr. If I don't get an official diagnosis, the insurance company said they will not pay my claim past February. If it is decided that my disability is due to Epstein Barr or fibromyalgia, they will only pay for 24 months. If it
    is PBC related, they will pay until age 65. Right now, I'm mainly concerned with just not getting cut off this spring.

    I posted a message on my PBC board. I got a HUGE reponse from them that their fatigue is absolutely identical to mine...just want to make sure I cover all the bases and ask my FM/CFS friends, too, so that my doc can be confident in attributing my fatigue to the appropriate illness.

    I thank you all in advance for reading this very long message and for any responses you can give me!

    Thanks!
    TerryS
  2. PVLady

    PVLady New Member


    Chronic fatigue and fibromyalgia are both illnesses that are diagnosed by a process of eliminating any other cause. Your condition of primary biliary cirrhosis sounds like it can be causing alot of your symptoms.

    I found the following info on PBC that mentions the itching, etc. Perhaps you have already read about it but others here may not know what it is.

    You did not mention the medications you take, but you might want to check all the side effects of your meds.



    What is Primary Biliary Cirrhosis (PBC)?

    By Howard J. Worman, M. D.
    Primary biliary cirrhosis (PBC) is a disease characterized by inflammatory destruction of the small bile ducts within the liver.

    PBC eventually leads to cirrhosis of the liver. The cause of PBC is unknown, but because of the presence of autoantibodies, it is generally thought to be an autoimmune disease.

    Other etiologies, such as infectious agents, have not been completely excluded. PBC has a worldwide prevalence of approximately 5/100,000 and an annual incidence of approximately 6/1,000,000. The prevalence and incidence appear to be similar in different regions of the world. About 90% of patients with PBC are women.

    Most commonly, the disease is diagnosed in patients between the ages of 40 and 60 years.
    Most patients with PBC present with pruritus (itching). After pruritus, jaundice (yellow skin caused by bilirubin retention) is the most common presenting symptom. Several patients also present with complaints related to chronic portal hypertension (increased blood pressure in the veins that go to the liver that can lead to symptoms such as bleeding in the esophagus or fluid retention in the abdomen).

    Some patients are discovered to have PBC during workup of another illness. Since the widespread use of routine serum biochemical analysis, many patients present for evaluation of an elevated serum alkaline phosphatase activity that was detected on laboratory examination.

    Patients with PBC have abnormalities in several blood tests. In essentially all patients, the serum alkaline phosphatase and gamma-glutamyltranspeptidase activities are markedly elevated (these are enzymes present in the bile ducts).

    Serum alanine aminotransferase (ALT) and aspartate aminotransferase (AST) activities are usually moderately elevated (these are enzymes made by hepatocytes, the predominant liver cell type).

    The serum bilirubin concentration is normal early in the disease and raises as the disease progresses (which causes jaundice or yellow skin). Most patients have an elevated serum cholesterol concentration which is largely contained in an abnormal lipoprotein, termed lipoprotein X, which is produced in patients with bile duct obstruction.

    The total gamma-globulin concentration is usually normal until late in the disease when cirrhosis develops. Almost all patients with PBC have an elevated serum IgM concentration (a type of antibody).

    The prothrombin time (a measure of blood clotting) and serum albumin concentration (the major protein in blood that is made in the liver) are normal until cirrhosis develops later in the course of disease.

    Serum autoantibodies are of primary importance in the diagnosis of PBC. Antibodies against mitochondria are characteristic of PBC and found in about 90% of patients. About 50% of patients with PBC also have antinuclear antibodies.

    Antibodies against mitochondrial and nuclear proteins are found in several diseases besides PBC, but the cDNA cloning of several mitochondrial proteins has shown that antibodies against specific antigens are virtually diagnostic of PBC.

    The same has been shown to be true for antibodies against nuclear proteins in about 25% of patients. Because of the presence of specific autoantibodies, PBC is thought to be an autoimmune disease. Several laboratories around the world are actively involved in determining how the immune response relates to the bile ducts destruction characteristic of the disease.

    In addition to clinical and laboratory abnormalities and the presence of specific autoantibodies, histological examination (looking at tissue under the microscope) of liver tissue is of central importance in the diagnosis of PBC. Tissue for this purpose is obtained by liver biopsy which is generally an outpatient procedure.

    Histologically, PBC is classified into four stages. Stage I is referred to as the florid duct lesion or nonsuppurative destructive cholangitis and is characterized by mononuclear inflammatory cells surrounding a small bile duct. In stage II, there is proliferation of small bile ductules. Stage III is characterized by fibrosis or scarring. Stage IV is cirrhosis.

    These histological stages demonstrate the progression of the disease from destruction of the intrahepatic bile duct to fibrosis and cirrhosis. Histological features of more than one stage can be seen on one liver biopsy. Because of sampling differences, the stages can also vary in liver biopsies done at different times on the same patient. In general, however, there is a gradual progression over years from the histological features of stage I to stage IV.

    The diagnosis of PBC must be based on a combination of historical, laboratory, serological and histological criteria. In general, patients are middle aged women who present with pruritus early and jaundice late.

    Patients that present late in the course of disease may also have signs and symptoms of cirrhosis and hepatic failure. Many patients are referred for evaluation of an isolated elevated serum alkaline phosphatase activity on laboratory testing for other purposes.

    Essentially all patients have elevated serum alkaline phosphatase and gamma-glutamyltranspeptidase activities. The serum IgM concentration is almost always elevated. About 90% of patients have autoantibodies against specific mitochondrial proteins (the E2 subunits of the oxo-acid dehydrogenase complexes).

    Approximately 50% of patients have antinuclear antibodies, sometimes against very specific proteins (nuclear pore membrane protein gp210, transcriptional activator Sp100, inner nuclear membrane protein LBR). The absence of an elevated serum IgM concentration and/or specific autoantibodies should place the diagnosis of PBC in doubt. Patients with PBC must have a consistent liver biopsy.

    The histological findings alone are frequently not diagnostic as the florid duct lesion is often not seen and other features, such as ductular proliferation, fibrosis and biliary cirrhosis, can be seen in other liver diseases.

    PBC is a progressive disease that leads to cirrhosis and liver failure. The time from diagnosis to end-stage liver disease can range from a few months to 20 years depending upon when the diagnosis is first made. Several mathematical models based on clinical, laboratory and histological criteria have been devised to predict disease progression.


    In general, the development of portal hypertension indicates a poor prognosis. The serum bilirubin concentration is the best prognostic indicator of all laboratory values. Once the serum bilirubin concentration reaches 6 mg/dl, the average life expectancy is about 2 years. At this time, patients should be evaluated for possible liver transplantation.

    Despite extensive studies, medical therapy has not been shown to have a significant impact in slowing the progression of PBC. Patients with PBC should take vitamins and calcium to help prevent osteoporosis (loss of bone), a common complication of this disease.

    Colchicine may play a role in inhibiting liver fibrosis and improves laboratory values but not signs or symptoms. D-penicillamine has been studied in several series but the results have shown it to be ineffective and possibly toxic. Various immunosuppressive agents have been studied in patients with PBC.

    Corticosteroids are probably not effective and may aggravate the osteoporosis commonly present in patients with PBC. Azathioprine (Imuran), methotrexate and cyclosporin A have been examined in several studies and are still being investigated, but these agents will not likely produce radical improvements in clinical course.

    Ursodiol (Actigall or Urso), a bile acid, has been shown to improve the laboratory and clinical parameters in patients with PBC and the results of one study suggest that it may slow the progression of the disease. Orthotopic liver transplantation is highly successful in patients with end-stage liver disease resulting from PBC.




    [This Message was Edited on 02/02/2007]
  3. jvrealty

    jvrealty New Member

    hi terrys
    i had terrible fatigue.....dx with fibro in 2003. rheumy prescribed provgil...this has saved my life. i take 1 a day instead of the 2 prescribed because i don't want to be up all day. 1 tab gets me thru the entire day. now, if i want to go out in the evening i take 2.

    look this up on the search....many of us are on this wonder drug. it really does help you stay awake and keep you awake.

    ask you doctor to try it. hope it helps

    jv
  4. JLH

    JLH New Member

    Regarding your 3rd paragraph on how you feel when you wake up and 4 hrs later .... have you ever been tested for diabetes? It kind of sounds like how you feel with low blood sugar before you get something to eat.

    But I do recognize your story on how you feel with the debilitating fatigue. I have the same problem.
  5. foggygirl

    foggygirl New Member

    Hi Terrys,

    I feel exactly the way you described. I found that if I pace myself instead to going til I drop, it has helped me tremendously. I'll be busy for 20 minutes, sit or lie down for 20 min., etc. Initially doing this was so hard because I've always been active, but it has really reduced what I call my "instant crash" times and also seems to be cumulative in that the pacing myself helped to reduce the deeper "crashes"

    Sorry I can't help you with the rest. I'm also constantly dealing with my LTD insurance company, so can relate to what you're going thru...they are all horrible and crooked.

    Good luck and best to you.

    Foggygirl
  6. Catseye

    Catseye Member

    I see you asked me something back in Nov but I couldn't get too detailed there, my mind just wasn't working too well. It sounds like your liver's not too happy so you have to baby it.

    Do you mind telling me what you're eating and if you're taking any supplements?

    Protein, fat, lots of sugar and meds will slow your liver down and make everything it does more difficult. When you eat, eat several little meals each day, maybe 2-3 hours apart or sooner if you're hungry. Always eat something if you're hungry. A tired liver loves veggies. If you don't, boil them in chicken broth and uses spices like curry to help get them down. Veggies are extremely important to an injured liver. Not only because they have things you need, but because if you're eating veggies, you're not eating other junk.

    Stick to small amounts of chicken and fish. Red meat is hard to digest. Listen to your body when you eat, if you've eaten too much, you're going to feel extra tired and your liver will need to work extra hard. Don't eat until you're full, just enough to not be hungry. Brown rice and garbanzo beans and veggies are my "staple" foods, I eat them everyday. And make sure you are eating veggies several times a day. They digest well with rice and beans. But don't mix starch and proteins, that means like rice and beans with meat. It's too hard to digest.

    I eat chicken with veggies, rice and beans with veggies or fish with veggies, but never chicken with rice and beans. Meats and starches just don't do well together. That's part of the reason we're all malnourished: we've been eating starches and proteins and been unable to process all the nutrients out of them.

    Stop eating dairy and wheat. They are hard to digest and will tire out your liver. You should start to feel better within a couple of days of giving these up, if you haven't already. You'll need a Vitamin B complex, among other things. Dairy is full of fat the liver doesn't like and bread you have to eat with sugar or butter (more fat) and neither one of them is healthy.

    If you're like me, your liver is unable to process and assimilate nutrients like it should. For example, all the vitamins we take have to be processed into another form by the liver for our bodies to be able to use them. They don't just go into the blood as is. So it's important to take easily absorbable forms of vitamins and minerals. Get a good one from the health food store. One thing you want to avoid is magnesium oxide. It is a cheap, hard to absorb form. Get one that has magnesium glycinate, taurate or malate. Make sure it has a good bit of everything. And if you find one that you have to take let's say 6 pills a day to get the required amounts, that's good. Because a damaged liver is unable to store the vits and mins until you need them so it's better to take them throughout the day.

    My liver doc kept saying my liver was functioning fine but I was like you. And when I started treating it like it was damaged, I improved. My diet is boring but I feel good and I can function during the day. One sign of liver troubles is itching. It's probably either food allergies or bile getting into your skin. It may be the dairy or gluten. It is very important to eliminate them from diet first, if you feel better later you can try to add them back but you're better off without them.

    You're feeling like you're going to collapse because that's when your body's reserves are about to run out. You can take the mitochondria fuel supplements I keep harping on to everybody. You have to have a good diet and a good vitamin and mineral supplement happening, too, but here they are. They prevent me from crashing, I take them everyday, first thing in the morning:

    d ribose - about 1/2 tsp
    magnesium glycinate 200 mg in the morning, and much more later
    nadh - 10 mg
    acetyl l carnitine - 500 mg
    coq10 - oil based gel cap, 200 mg

    If these don't work and you've done everything I said, then add:

    creatine 1/2 - 1 tsp about 2-5 grams
    glutamine 1/2 - 1 tsp abotu 2-5 grams

    This is enough to keep you occupied. Look at xchocoholics "easy healthy food ideas cooked or raw" on the chit chat board. We've got some good stuff on there. But watch out for too much fat or protein. Look at healingdaily.com for good diet tips. Liver support and liver cleanse pills have helped me tremendously with liver function. They are all different kinds and I have tried several. They all seem to work. It may take a few months to get your liver functioning better but it will happen. Make sure you take milk thistle, a good brand, at least 2-3 times a day. I take 300 mg twice a day. Other supplements for the liver:

    NAC 100-500 mg 1-2x day, start slow, if you take too much, the liver will have a hard time with it.

    Here's some I take everyday:

    SAMe
    phosphatidyl choline
    MSM
    raw glandular
    alpha lipoic acid
    methionine
    taurine
    NAC
    milk thistle
    liver support with mushrooms

    Other's I took to help it get functioning again:

    burdock
    gentian root
    bupleurum root
    dandelion
    yellow dock

    There's lots of stuff out there, you just have to investigate and find what works for you. I just saved you a ton of google time!

    good luck,

    karen

    if you have questions, please feel free
    here's a good article about liver and supps for it:

    http://www.ei-resource.org/liver-supplements.asp
    [This Message was Edited on 02/03/2007]
  7. hugs4evry1

    hugs4evry1 New Member

    I was also going to suggest that you have your blood sugar tested. It sounds like how I often feel, yet I never knew that blood sugar problems could make you feel like this.

    I had also bought a folding cane to carry in my purse, that's how fast this feeling could come up on me.

    It would also be worth a shot to have your thyroid tested too.

    Hugs,

    Nancy B
  8. TerryS

    TerryS Member

    Hey Everyone: Thanks for all the advice and info. Karen, there's a huge amount of information there!!! You're totally right on. When I initially found out about the liver problem last fall, I was really on board with eating properly and getting supplements to help my liver. For whatever reason, since the week after Christmas I have felt halfway normal in the mornings (at least) before crashing. But now in the past week, things have gone downhill again. Now my head is spinning constantly and I have to lie down for hours at a time.

    I don't know what's going on. Maybe I've pushed myself too much (taken advantage of feeling well in the mornings), or maybe it's my eating habits, or maybe the Epstein Barr virus has kicked back up in me...I don't know!!!

    By the way, Hugs, I was seriously considering buying a cane. I borrowed my sister's one day while we were out, and it really did seem to help. A portable folding one would work out well.

    TerryS