Just watched Dr. Oz. I don't fit the Chronic Fatigue symptoms. ?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by needtobreakfree, Apr 11, 2014.

  1. Hi all. I just watched Dr. Oz talk about Chronic FatigueThe listed five signs of chronic fatigue and said if you have three of the ones they listed then you have CFS. Well, I only fit one but my symptoms are so severe.

    I don't remember all five but it was like feeling tired for at least four weeks, having unrefreshing sleep, difficulty concentrating, muscle pain, and something else. Maybe getting confused was one.

    The only one I have is the muscle pain. I'm so weak I've been bedridden since December. I did have fatigue but it only lasted a month and was gone. Now I'm only left with debilitating weakness and muscle pain. Has anybody else experienced this? I just started Valcyte and I'm wondering how long it will take to see progress. I've seen minor progress in the week and a half on it already, but it's only mild progress.

    I'm just wondering if anybody else has ever had such severe physical problems that even rolling over in bed is difficult and painful but doesn't have symptoms of being tired and no brain fog? I keep getting worried that these physical symptoms will never end, and I can't find any other cases like mine. Thank you!
  2. TigerLilea

    TigerLilea Member

    To be honest, that doesn't sound like CFS that you have. The main features of CFS are the chronic exhaustion/fatigue and post exertional malaise. For myself, at least, the muscle pain is probably the least bothersome of my symptoms. I'd definitely recommend that you go back to your doctor and get some further testing done so that you get the correct diagnosis. Have you been checked for tender points? Is your pain on both sides of your body and on the top and bottom halves of your body? If yes, you could have FM.
  3. Thank you for your response. :) I'll have to talk to my dr and see what he thinks about FM. I do have a whole lot of post exertional problems with my body. Pretty severely. I may have some tiredness but it doesn't match the amount of physical problems. It's just sort of unusual and I can't seem to find another case like it. Very confusing.
  4. IanH

    IanH Active Member

    Firstly Dr. Oz has a tendency to over simplify things. Tiredness is NOT a usual symptom of ME/CFS. If a person is sleeping very badly then some tiredness can become overwhelming causing trance like symptoms, making driving dangerous but this is not that common. High levels of WIDESPREAD pain occurs in about 20% of people with ME/CFS and his means they do fit the diagnosis of fibromyalgia. Do they have FM plus ME/CFS - No!, they have ME/CFS. Adding the diagnosis of FM says nothing. They have ME/CFS with widespread pain because in their case the immune system is probably causing low grade inflammation which causes alterations in blood flow and there is an elevation of pain amplifying proteins in the nervous system. Someone with ME/CFS who does not have this does not experience the widespread pain.

    When you experience such pain it tends to DOMINATE your symptoms and incapacitate you so that you avoid exerting yourself. Believe me, there is nothing much worse than ME/CFS with widespread severe pain.

    ME/CFS symptoms do vary considerably. Just because you do not experience post exertional malaise does not mean you do not have ME/CFS. For example some people's activity levels when they become ill fall and they are not "naturally" exerting themselves enough to trigger PEM. If you were in a condition to test this you could exercise vigorously and see what happens. If you do have ME/CFS you will suffer more PAIN the next day. Not malaise!!!

    I have argued this point many times, PEM is a very limiting concept and in my experience people with ME/CFS can suffer PEM, PCM (post chemical exposure malaise) PEP (post exertional pain) and even PCP (post chemical exposure pain) For some, stressful events can trigger malaise OR heightened pain one or two days later too.

    So you can see the great variations that occur. In simple terms ME/CFS can have a number of different symptoms which are aggravated by various events specific to the person.
  5. IanH

    IanH Active Member

    I forgot to add:
    The best treatment for your symptoms (not your disease) is :

    Vitamin D 5000iu daily
    DHA/EPA 1 gram taken twice daily (No less) Be careful about general fish oil preparations. They MUST contain at least 1 gram of DHA/EPA combination.

    This combination reduces low grade inflammation very well. As well as any pharmaceutical ant-iinflammatory drug. It would take around three weeks to have significant effect. Of course the valcyte may reduce you symptoms too but will probably take longer. It is possible Valcyte will "cure " you at least for a while. However remember that the virus which the valcyte is affecting will never never go away but should become less active, which may give your immune system a chance to get the virus under control (back into latent state).

    It is very important to help the anti-viral along. The more you can lower the inflammatory state (pro-inflammatory cytokines such as IFN-gamma) and the more you can normalize your natural killer cell function the better and quicker job your valcyte can do.
    Last edited: Apr 13, 2014
  6. Mikie

    Mikie Moderator

    Thank you, Ian. I agree with everything you posted. Too many people think these "lists of symptoms" are critical to diagnosing. Firstly, we do not all fit into neat categories. I believe there are subsets of CFIDS/ME. Treating the triggering event may be critical to our healing. I have an unidentified Herpes-Family Virus but it was a mycoplasma infection which originally triggered my CFIDS/ME full blown. It took 2 1/2 years on antibiotics to drive the mycoplasma back into latency (mycoplasmas can form latent cysts and usually never go away either). It took 1 1/2 years on antivirals to drive my HFV into latency. If I get run down, as I did recently from a series of bladder infections and allergies, the HFV will rear its ugly head and I have to go back on the AVs. This time, I took transfer factors which are more harsh but work much, much faster.

    I am mostly asymptomatic from my CFIDS/ME, FMS, hypothyroidism and Sjogren's thanks to the peptide injections but the mycoplasma and HFV will be with me forever, even when latent.

    One of my best docs never put people in slots. He tried to tailor his treatments for each patient. He talked to his patients and drew Venn diagrams to help explain the symptoms and where they overlap. This is a most helpful approach. My belief has always been to worry less about a diagnoses and work on the worst symptom first. Then, the second worst, and so on. This approach has served me well.

    Needtobreakfree, best of luck to you. Most of us here are not "classic" patients of any one diagnosis but rather a collection of symptoms which seem to put us into a category which may have many subsets. Energy is better spent working on treating our symptoms rather than looking for a precise diagnosis.

    Love, Mikie