CFS & FM, my questions are unanswered, can you help.

Discussion in 'Fibromyalgia Main Forum' started by futurehope, Feb 2, 2006.

  1. futurehope

    futurehope New Member

    I really hope that I do not offend anyone here, I am new here and would hate to lose one of the only places that I can turn for help.

    I have been going thru tons of posts and reading alot. I am noticing that a ton of people that have CFS and FM have found out that there are other dieseases and illnesses popping up, found after they were diagnosed with the CFS or FM.

    Is it possible that the CFS or FM is secondary to what the problem really is? I will put it this way, say you have EBV that is causing you to feel chronically ill or something like that, does that mean you do not have CFS or FM or does it mean that you do, it is just secondary to the true illness.

    I have been worried about having the BIG (C) (Cancer), because it have had it before (13 years ago). I remember how I felt and it took them 4 months and 9 days in the hopsital to even find out I had phenomia (sp). Then when the phenomia (sp) would not go away they decided to run more tests and found out I had cancer. Do not know how to get over this one, and hope that I just do not get written off with having CFS or FM when there may be something more serious underlying. I just do not understand how I can feel sick and so fatigued and they cannot figure it out.

    If they do find something underlying (like lymes or EBV) and I still welcome on this board) and still considered to have CFS or FM?

    Again, please do not hate me for asking.

    Love and prayers for everyone,
    Brenda

  2. amymb74

    amymb74 New Member

    for 11 years and at first I was sure I was dying of something awful that the doctors couldn't find, even with all their testing. Every time I would see a new doc it was like a new hope, I thought he'd run tests the others hadn't and they'd figure it all out. Then when they were out of ideas and labeled me as CFIDS I felt they gave up on figuring me out and just threw me a label to satisfy a diagnosis. I still don't understand how I could feel this bad and by all the testing I'm healthy. Before this I never had any medical problems at all. I read in another post that you had your fill of things to deal with so maybe in your case the fatigue is secondary. Hope you feel better soon. Amy
  3. MKlady

    MKlady New Member

    There are a number of us going to the Fibromyalgia and Fatigue Centers (search FFC) which are among the specialists, like Dr. Cheney and Dr. Teitelbaum, who feel there are underlying diseases, infections and imbalances that cause the syndrome and can be addressed to help us feel better. Even if we have the underlying infections we still have the syndromes. Not everyone with the infections get the syndromes.

    There's another thread on the board (search "news for CFS") about discoveries by Dr. Kerr and others that there are genetic markets for ME or CFS...and they hypothesize that infections created the genetic dysfunctions.

    This article is from fibo and fatigue centers website

    Multi-faceted Treatment Approach is Best

    Chronic Fatigue Syndrome (CFIDS) and Fibromyalgia (FM) are illnesses that often coexist and affect millions of Americans. Symptoms vary amongst individuals and commonly include severe fatigue, sleep disturbances, cognitive problems commonly called brain fog, muscle pain and multiple infections.

    Unfortunately, many individuals and physicians continue to deny that these syndromes are legitimate diseases. The medical literature is, however, very clear that these are legitimate diseases and individuals with these syndromes have measurable hypothalamic, pituitary, immune and coagulation dysfunction.

    These abnormalities then result in a cascade of further abnormalities, in which stress plays a role. The pituitary and hypothalamic dysfunction results in multiple hormonal deficiencies that are often not detected with standard blood tests, and autonomic dysfunction, including neurally mediated hypotension.

    The immune dysfunction, which includes natural killer cell dysfunction, results in opportunistic infections and yeast overgrowth, making the symptoms worse.

    Recent studies have shown that the coagulation dysfunction is usually initiated by a viral infection and has genetic predisposition. This abnormal coagulation results in increased blood viscosity (slugging) and a deposition of soluble fibrin monomers along the capillary wall. This results in tissue and cellular hypoxia, resulting in fatigue, and decreased cognition (brain fog).

    Neurotransmitter abnormalities and macro and micro nutrient deficiencies have also been shown to occur with these disorders.

    Gulf War Syndrome, which is almost identical to CFIDS and FM, was found to have a parallel cause. The cause was determined to be from multiple vaccinations under stressful conditions in susceptible individuals. These vaccines, which are viral mimics, resulted in the same coagulation cascade and the deposition of fibrin monomers, resulting in the same tissue hypoxia that occurs in FM and CFIDS. These multiple injections are being discontinued by the armed forces.

    Current research suggests that many triggers can initiate a cascade of events, causing the hypothalamic, pituitary, immune and coagulation dysfunction. The most common initiating cause is a viral or bacterial infection, which is very commonly Epstein Bar Virus (EBV), Cytomegalovirus (CMV), HHV6, mycoplasma, Chlamydia pneumonia or Lyme's disease. These are found in 80% of CFIDS and FM patients. Many people with these syndromes can pinpoint the start of their disease to a viral infection that never got better. Also, stress seems to be a contributing factor.

    Effective treatment, with 80 to 90 percent of individuals achieving significant clinical benefits, can be achieved by simultaneously treating the above problems that an individual is found to have. The mix of treatments needed varies from patient to patient.

    There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals because of the pituitary dysfunction.

    Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3 is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions.

    Adrenal insufficiency and growth hormone deficiency are also very common with these disorders, and supplementation with these hormones can often have profound effects. As with thyroid testing, these deficiencies are, unfortunately, usually not detected with the standard screen blood tests and require more specific testing.

    When an individual is found to have one of the viruses discussed above, these can be treated with resulting improvement in symptoms. It can require a combination of medications, supplements and sometimes intravenous treatments to eradicate some of the persistent infections.

    Although a concept that is sometimes uncomfortable and foreign to traditional medical styles of thinking, the need for multiple interventions is effective when an illness affects a critical control center (such as the hypothalamus), which impacts the multiple systems noted above.

    Unfortunately, there is not a single treatment that reverses hypothalamic dysfunction directly. Thus, this situation is different from illnesses that affect a single target organ and which can be treated with a single intervention. For example, pituitary dysfunction itself often requires treatment with several hormones. This effect is multiplied in hypothalamic dysfunction, which affects several critical systems in addition to the pituitary gland.

    An integrated treatment approach based on simultaneously treating the above problems is significantly beneficial in CFIDS and FM. Individuals with these devastating syndromes can "get their lives back" despite the fact that they were previously told, "There is nothing that can be done," or "It is all in your head."

  4. futurehope

    futurehope New Member

    Thank you for your response and for reading my other posts to see my history. You are a great person!!!

    Love and prayers,
    Brenda
  5. TwinMa

    TwinMa New Member

    You are just asking the same questions the rest of us ask all the time! I personally feel that there are many other things underlying the FM and/or CFS. Hormonal imbalances, compromised immune systems, sleep problems, nutritional deficiences, Lyme, etc. It's all very complicated and it's all interconnected.

    Don't stop asking questions. And I hope you DO find something underlying (other than the big C). That way you have something to treat!
  6. PVLady

    PVLady New Member

    You know, anything is possible. Fibro and CFS mimic so many other illnesses - you can never ever assume your problem is fibro or cfs because it easily could be something worse.

    This is a very good point. Sometimes even a borderline vitamin deficiency can cause fatigue. My brother used to have terrible fatigue and muscle pain. He started taking a really good vitamin, I believe it is called "Source of Life" by Natures Plus.

    He swears his muscle pain and fatigue went away. I am not big on vitamins because I get insomnia. I know I should take them because I don't eat well.

    If you are afraid of cancer, you can always ask for a special blood test once a year that detects if cancer is in your system. I think it is called CA125??? Not sure. But I get it.

    I happen to have a doctor who offers what he called a "concierge" practice. Kind of funny, but he will even make house calls. Anyway, he orders all the tests.

    He is always ordering the C Reactive Protein test on me. It indicates you could have heart disease. I am always positive, but not really high. He wants me to take Statin drugs and I don't want to.

    Sorry for rambling....
  7. futurehope

    futurehope New Member

    I will keep searching for my quest of finding out what could be causing this DD. It sounds like that is what a lot of people are doing here.

    Thanks for making me not feel so bad in my thinking, and that IT COULD BE SOMETHING ELSE!!

    Everyone here is just so great!!

    Prayers for you all,
    Brenda
  8. bpmwriter

    bpmwriter New Member


    remember that CFS and FM are both still considered sydromes, which means they're a constellation of symptoms. the underlying cause is still not known, nor is there a clinical test for either syndrome. since it's generally thought that an immune defect causes CFS, you may have lyme, EBV and several more viruses and still have CFS. in other words, the immune defect makes you more susceptible to these chronic infections. of course, if you had cancer at one time, i would think you'd want to be extra vigilant about monitoring your symptoms and pushing for answers if something doesn't feel right. on the other hand, yes, you can feel pretty darn sick and fatigued from these syndromes. there's great info on the board for boosting your base-level immunity, getting better sleep and healing. of course, you're welcome here! it's the pits to be unwell no matter what you call it.

    eddie
  9. zerped

    zerped New Member

    In an odd way, one of the best ways to determine that you have CFIDS is to be tested for and not have the other diseases mentioned here. In a way, my doctor and I know that I have CFIDS because three neurologists lookd at me and two MRI's and determined that I don't have MS. My doctor said the only other thing that does what MS does is CFIDS.

    I am, of course, grateful that I don't have cancer or MS, but that is sometimes small consolation; especially when I'm unable to go to a friend's funeral because I'm so dizzy I can't stand up, or the only way I can make a headache go away is to lay in the dark with earplugs and my eyes closed (and thereby miss yet another A.A. meeting or chance to have coffee with a friend).

    The best advice I can think of is to just log all of your symptoms, meds tried, conditions outside, etc. Nowhere is the old phrase "An ounce of prevention is worth a mountain of cure" more relevant than in our lives. Welcome to a group of people who do together what none of us can do alone.


  10. Mikie

    Mikie Moderator

    Are leaning toward a genetic predisposition and that our illnesses can be triggered my a myriad of factors, including infections, illnesses, trauma, childbirth, stress, etc.

    There are a number of people who also have other illnesses which may or may not be connected. Right now, unfortunately, no one knows a lot of the answers to these questions. The good news is that they are looking and finding more and more clues. I believe there will be a cure in the next five years or, at least, better treatments.

    I do not believe we can achieve healing as long as there is chronic infection keeping us sick. Chronic infections often lead to hypercoagulation with overgrowth of heparin in the blood. This gives the pathogens a place to hide out from the immune system. Finally, I believe we need to rebuild our immune systems so they can fight these infections in the future.

    Changes in lifestyle, diet, stress, and activity can help too. There is a lot which can be done. Each of us has to take control over our own healthcare regimens because nothing helps everyone. It can take a lot of time but progress is possible. Good luck to you.

    Love, Mikie
  11. futurehope

    futurehope New Member

    I just cannot get over all of the compassionate and caring people on this site!!! I cannot even get a little from my family. I am pretty new here, and I hope that someday I will be able to help everyone as everyone here has helped me!!

    Tons of love and prayers,
    Brenda
  12. JLH

    JLH New Member

    I'm glad that you found us and certainly hope that you stick around!!

    FM and cfs MAY be secondary to other problems, nobody probably knows for certain to tell you the truth!! I know that my rheumy told me that people with systemic lupus (which I have) frequently have fibro. And ... I have fibro as well as arthritis all over my body, and osteoporosis. (I have a ton of other problems, too, see my bio.)

    Since you have had cancer and it took them so long to diagnosis it, I don't think it would be unreasonable for you to insist that your doc run more tests in areas that you are concerned. Maybe you should go to a oncologist for this, or a teaching hospital. Of course, all of your testing and seeing specialists may be limited to your finances and insurance coverage.

    You asked "If they do find something underlying (like lymes or EBV) aM I still welcome on this board) and still considered to have CFS or FM?" The answer is: OF COURSE!!!!

    And, oh my gawd, dear, nobody would EVER hate you for asking this!!!! Don't be silly! You can ask anything in the world that you want to--providing it is within the rules and regulations of this board!--and someone will try to answer it for us. Why, you should see some of the discussions we get into here!!! LOL You would be surprised on how many topics relate to our illnesses in one way or another!!

    Hope you get to feeling better. If you do get a diagnosis of fibro or cfs, maybe some of us can help you with some of the meds that we take to make us feel better.

    Many Hugs,
    Janet