Something different than Brain Fog

Discussion in 'Fibromyalgia Main Forum' started by lisa95355, Sep 22, 2009.

  1. lisa95355

    lisa95355 New Member

    Hello all,

    I am new to this website. I am posting to find out if any of you with Fibromyalgia and Chronic Fatigue experience this feeling. I have read about, and do experience the much documented "Brain Fog." However, I have also continuously contended with a state of altered consciousness. I feel like I am involved in a battle to keep from falling asleep or losing consciousness. It is a very weird feeling, like even when awake, and engaged in activity, I am not fully there. I describe it as feeling as if I have one foot in this world, while at the same time, having the other foot in some kind of netherworld, or like being a shadow. While appearing to function fully, I am only superficially engaged, and battling to maintain even this level of engagement.

    Does anyone out there understand what I am trying to convey?
  2. loto

    loto Member

    if what you describe is what i experience sometimes?
    I will be engaged in a conversation with my husband, for example, and all of a sudden i'll be looking at him and will feel like i am someone else, and have just met him or something. And it kind of feels like I am partly in a different world. Is that what you feel like? It's kind of hard for me to describe, but I've known my husband for 20 years now, and it feels really weird to look at him as if I don't know him.

    By the way, welcome to the board!!! I have been diagnosed with FM (the only diagnosis I have at this point), and have known it for just over a year.

  3. layla1954

    layla1954 New Member

    Hi Lisa,

    Due to imbalanced neurotransmitters, those of us with these DDs are notoriously susceptible to symptoms of both depression and anxiety.

    There are two anxiety states that might apply to what you're describing: depersonalization (feelings of weirdness involving identity) and derealization (feelings of unreality - like being in a dream).

    If you do a google search on these terms you'll find them described in more detail, but I would guess you're experiencing derealization. You might also search on the term dissociative symptoms, or dissociative disorders.

    In my previous lifetime (i.e. before I got so sick) I was a therapist in a community mental health center. These symptoms are actually not as unusual as you would think and if you are not on an SSRI antidepressant, that would be one treatment option.

    Hope this helps.

    Lee Ann
  4. lisa95355

    lisa95355 New Member

    Thank you Lori,

    I have experienced what you are talking about in that things, and place I know I know very well suddenly and momentarily seem unfamiliar. The first few times it happened to me it was really scary. Now, although still unsettling, I have learned to just wait for a moment, and things become familiar again. There is though sometimes an underlying fear that maybe one time it simply won't come back to me. I suppose it is just another thing we have to learn to live with under our current circumstances. I have recently, and I believe due to the supplement "SAMe" experiences moments of clarity near to what I had pre-FM and CFS.

    Thanks again for your openess Lori,

    Take care,

  5. lisa95355

    lisa95355 New Member

    Unfortunately for me it sounds like you may have identified exactly what I am describing. I will do more research on dissociative symptoms and disorders.

    I was taking Cymbolta. It did address many of my Fibro and CFM symptoms, but I noted no effect on the dissociative symptoms. However, since I have replaced Cymbolta with S-adenosyl Methinioine, and some other supplements, I have experienced notable improvement in all my symptoms, depth of dissociative state included. I was hoping I could make this feeling disappear completely. I guess I'm just being greedy. I am very thankful for the improvement I have currently experienced.

    For me, finally being able to label this terrible altered state feeling is empowering. Thank you very much Lee Ann.


  6. AuntTammie

    AuntTammie New Member

    Lisa, I think I know exactly what you mean, and if it is the same thing I have happen, it is not actually a form of dissociation, though I understand why Layla wrote about that, and there are definitely similarities. (& you wrote a good explanation, Layla). I used to experience various forms of dissociation due to trauma that I have long since recovered from, so I know what that is, too, and I have a counseling degree, so I also am familiar with it from a professional standpoint. However, if what Lisa is talking about is what I think it is, it is really just a result of complete exhaustion and physically and cognitively shutting down. Dissociation is generally an emotionally-based response and this is more a physical one, if that makes sense. I don't really know how to explain the difference better, except that dissociation is an emotional attempt to escape from feelings and/or a situation that one is having a hard time dealing with, and this physical response is more like the body is so exhausted it is trying to catch up on sleep while still awake.

    ETA: Your response to Layla was not posted yet when I wrote my response, so I might be wrong as to what you are experiencing. I am leaving this response up, though, in case I am rt, or in case someone else reading this is having the physical type of sleeping-while-awake thing I was talking about. Even if I am wrong about what Lisa is experiencing, there is definitely a purely physical type of reaction that I have had happen in response to being so exhausted, and it is very different from dissociating. And, btw, SSRIs made me worse when I was dissociating. If that is what is happening, there are other ways to learn to deal with it if you do not want to jump to meds.[This Message was Edited on 09/22/2009]
  7. lisa95355

    lisa95355 New Member


    Thank you Aunte.
  8. AuntTammie

    AuntTammie New Member

    apparently we have been writing responses at the same time- i was editing mine when you posted your "Bingo" response.....anyway, whatever the case is (physical or emotional) I hope that it continues to get better for you, bc I know that either way, it stinks to be so out of it
  9. richvank

    richvank New Member

    Hi, lisa.

    I think that your observation that SAMe helps with these symptoms is an important clue to what causes them. SAMe normally supplies methyl (CH3) groups to a large number of methylation reactions in the body's biochemistry. Some of them are involved in the metabolism of the neurotransmitters and in the operation of the dopamine D4 receptor, which is important in focussing and maintaining attention. The fact that SAMe helps you means that the amount of SAMe that is being produced naturally in your body is too low. SAMe is normally produced in every cell of the body, in the part of the biochemistry known as the methylation cycle.

    I don't know if you are familiar with the GD-MCB hypothesis (glutathione depletion--methylation cycle block) hypothesis for the pathogenesis of CFS (I happen to be the author of it :)-)). Anyway, this hypothesis proposes that the methylation cycle is partially blocked in CFS, and this accounts for the lowered production of SAMe.

    Based on your improvement from taking SAMe, I would suggest that you ask your doctor to order the Vitamin Diagnostics methylation pathways panel (information below). If this panel confirms that you have a partial methylation cycle block, I suggest that you and your doctor consider the simplified treatment approach for lifting this block (information below). This treatment consists only of nonprescription targeted nutritional supplements and costs less than $3 per day. It is helping about two-thirds of the people with CFS who try it. I am not financially connected to either the test panel or the supplements.

    Best regards,

    Rich Van Konynenburg

    Methylation Pathways Panel

    This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

    The panel costs $300 and requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on your clinician’s letterhead.

    Available from:

    Vitamin Diagnostics, Inc.
    Rt. 35 & Industrial Drive
    Cliffwood Beach, NJ 07735
    Phone:+1 (732) 583-7773
    Fax: +1 (732) 583-7774)

    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., Eastern time)

    Dr. Audhya is willing to help clinicians with interpretation of the panel by phone.

    Interpretation of the Vitamin Diagnostics
    Methylation Pathways Panel

    Rich Van Konynenburg, Ph.D.

    Several people have asked for help in interpreting the results of
    their Vitamin Diagnostics, Inc., methylation pathway panels. Here are my
    suggestions for doing so. They are based on my study of the
    biochemistry involved, on my own experience with interpreting more
    than 120 of these panel results to date, and on discussion of some of
    the issues with Tapan Audhya, Ph.D., who is the director of the
    Vitamin Diagnostics lab.

    The panel consists of measurement of two forms of glutathione
    (reduced and oxidized), adenosine, S-adenosylmethionine (SAM) , S-
    adenosylhomocysteine (SAH), and seven folic acid derivatives or

    According to Dr. Audhya, the reference ranges for each of these
    metabolites was derived from measurements on at least 120 healthy
    male and female volunteer medical students from ages 20 to 40, non-
    smoking, and with no known chronic diseases. The reference ranges
    extend to plus and minus two standard deviations from the mean of
    these measurements.

    Glutathione: This is a measurement of the concentration of the
    reduced (active) form of glutathione (abbreviated GSH) in the blood
    plasma. From what I've seen, most people with chronic fatigue
    syndrome (PWCs) have values below the reference range. This means
    that they are suffering from glutathione depletion. As they undergo
    the simplified treatment approach to lift the methylation cycle
    block, this value usually rises into the normal range over a period
    of months. I believe that this is very important, because if
    glutathione is low, vitamin B12 is likely unprotected and reacts with toxins
    that build up in the absence of sufficient glutathione to take them
    out. Vitamin B12 is thus “hijacked,” and not enough of it is able to
    convert to methylcobalamin, which is what the methylation cycle needs
    in order to function normally. Also, many of the abnormalities and
    symptoms in CFS can be traced to glutathione depletion.

    Glutathione (oxidized): This is a measurement of the concentration
    of the oxidized form of glutathione (abbreviated GSSG) in the blood
    plasma. In many (but not all) PWCs, it is elevated above the normal
    range, and this represents oxidative stress.

    Adenosine: This is a measure of the concentration of adenosine in the
    blood plasma. Adenosine is a product of the reaction that converts
    SAH to homocysteine. In some PWCs it is high, in some it is low, and
    in some it is in the reference range. I don't yet understand what
    controls the adenosine level, and I suspect there is more than one
    factor involved. In most PWCs who started with abnormal values, the
    adenosine level appears to be moving into the reference range with
    methylation cycle treatment, but more data are needed.

    S-adenosymethionine (RBC) (SAM): This is a measure of the
    concentration of SAM in the red blood cells. Most PWCs have values
    below the reference range, and treatment raises the value. S-
    adenosylmethionine is the main supplier of methyl groups in the body,
    and many biochemical reactions depend on it for their methyl
    groups. A low value for SAM represents low methylation capacity, and
    in CFS, it appears to result from a partial block at the enzyme methionine
    synthase. Many of the abnormalities in CFS can be tied to lack of
    sufficient methyation capacity.

    S-adenosylhomocysteine (RBC) (SAH): This is a measure of the
    concentration of SAH in the red blood cells. In CFS, its value
    ranges from below the reference range, to within the reference range,
    to above the reference range. Values appear to be converging toward
    the reference range with treatment. SAH is the product of reactions
    in which SAM donates methyl groups to other molecules.

    Sum of SAM and SAH: When the sum of SAM and SAH is below 268
    micromoles per deciliter, it appears to suggest the presence of
    upregulating polymorphisms in the cystathione beta synthase (CBS)
    enzyme, though this may not be true in every case.

    Ratio of SAM to SAH: A ratio less than about 4.5 also represents low
    methylation capacity. Both the concentration of SAM and the ratio of
    concentrations of SAM to SAH are important in determining the
    methylation capacity.

    5-CH3-THF: This is a measure of the concentration of 5-methyl
    tetrahydrofolate in the blood plasma. It is normally the most
    abundant form of folate in the blood plasma. It is the form that
    serves as a reactant for the enzyme methionine synthase, and is thus
    the most important form for the methylation cycle. Many PWCs have a
    low value, consistent with a partial block in the methylation cycle.
    The simplified treatment approach includes FolaPro, which is
    commercially produced 5-CH3-THF, so that when this treatment is used,
    this value rises in nearly every PWC. If the concentration of 5-CH3-
    THF is within the reference range, but either SAM or the ratio of SAM
    to SAH is below the reference values, it suggests that there is a
    partial methylation cycle block and that it is caused by
    unavailability of sufficient bioactive B12, rather than
    unavailability of sufficient folate. I have seen this frequently,
    and I think it demonstrates that the “hijacking” of B12 is the root
    cause of most cases of partial methylation cycle block. Usually
    glutathione is low in these cases, which is consistent with lack of
    protection for B12, as well as with toxin buildup.

    10-Formyl-THF: This is a measure of the concentration of 10-formyl
    tetrahydrofolate in the blood plasma. It is usually on the low side in PWCs.
    This form of folate is involved in reactions to form purines, which
    form part of RNA and DNA as well as ATP.

    5-Formyl-THF: This is a measure of the concentration of 5-formyl
    tetrahydrofolate (also called folinic acid) in the blood plasma.
    Most but not all PWCs have a value on the low side. This form is not used
    directly as a substrate in one-carbon transfer reactions, but it can
    be converted into other forms of folate. It is one of the
    supplements in the simplified treatment approach, which helps to
    build up various other forms of folate.

    THF: This is a measure of the concentration of tetrahydrofolate in
    the blood plasma. In PWCs it is lower than the mean normal value of 3.7
    nanomoles per liter in most but not all PWCs. This is the
    fundamental chemically reduced form of folate from which several
    other reduced folate forms are made. The supplement folic acid is
    converted into THF by two sequential reactions catalyzed by
    dihydrofolate reductase (DHFR). THF is also a product of the
    reaction of the methionine synthase enzyme, and it is a reactant in
    the reaction that converts formiminoglutamate (figlu) into
    glutamate. If figlu is high in the Genova Diagnostics Metabolic
    Analysis Profile, it indicates that THF is low.

    Folic acid: This is a measure of the concentration of folic acid in
    the blood plasma. Low values suggest folic acid deficiency in the
    current diet. High values are sometimes associated with inability to
    convert folic acid into other forms of folate, such as because of
    polymorphisms in the DHFR enzyme. They may also be due to high
    supplementation of folic acid.

    Folinic acid (WB): This is a measure of the concentration of folinic
    acid in the whole blood. See comments on 5-formyl-THF above. It
    usually tracks with the plasma 5-formyl-THF concentration.

    Folic acid (RBC): This is a measure of the concentration of folic
    acid in the red blood cells. The red blood cells import folic acid
    when they are initially being formed, but during most of their
    approximately four-month life, they do not normally import, export, or use
    it. They simply serve as reservoirs for it, giving it up when they
    are broken down. Many PWCs have low values. This can be
    caused by a low folic acid status in the diet over the previous few
    months, since the population of RBCs at any time has ages ranging
    from zero to about four months. However, in CFS it can also be
    caused by damage to the cell membranes, which allows folic acid to
    leak out of the cells. Dr. Audhya reports that treatment with omega-
    3 fatty acids can raise this value over time.

    April 18, 2009


    (Extracted from the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])


    1. FolaPro [2]: ¼ tablet (200mcg) daily
    2. Actifolate [3]: ¼ tablet daily
    3. General Vitamin Neurological Health Formula [4]: start with ¼ tablet and work up dosage as tolerated to 2 tablets daily
    4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
    5. Activated B12 Guard [6]: 1 sublingual lozenge daily

    All these supplements can be obtained from, or all but the third one can be obtained from other sources.
    The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

    [1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
    [2] FolaPro is a registered trademark of Metagenics, Inc.
    [3] Actifolate is a registered trademark of Metagenics, Inc.
    [4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
    [6] Activated B12 Guard is a registered trademark of Perque LLC.

  10. JewelRA

    JewelRA New Member

    And I would say this is perhaps my most distressing symptom.

    It's very hard to say for me how much of it is a symptom of FM/CFS, a symptom of anxiety and depression, and a side-effect of my medications! That's the most frustrating part!

    Fortunately, it is not constant.

    My meds (usually) seem to help - my antidepressant and klonopin.

    My doctor has a theory that it is low oxygen in the brain due to disordered breathing. Interesting, and possibly part of it, but I don't think that's all of it. I think neurotransmitters are involved.

    Are you on any meds?
  11. SpiroSpero

    SpiroSpero New Member

    Sometimes I feel like losing the grip to reality, I'm confused, I don't know where I am or what I am while at the same time I do know. It's really awful. It's time that they find a cure for CFS.
  12. marw

    marw New Member

    Yes. It sounds like what I have sometimes. To me, it does not seem either emotional or physical. (maybe physical, not sure) I named it "shadow-walking" years ago. For me, it seems related to concentration. I must focus completely on the 5 minutes I am in, and not let my mind stray to anything either past or future, not even 5 minutes into the future! I think of it as moving from one shadow to the next, i.e.

    It seems to work and keeps me from becoming frightened that I will forget something. I just trust that I will know when the time (the next five minutes) gets there, and I always have. It also helps eliminate confusion.

    It's not something I practice consciously, however. It's either there or not there, most of the time it is always seems to be a part of the Fibro. Anyway, it came when the Fibro did.

    It's discouraging not to feel the immediate (and joyful) connection with Life that I once had, but I do not know anything else to do for this.

    I would be interested to know if anyone ever solves it, but in my case, if it left, so would the Fibro, which never seems to happens. I go into remission maybe once or twice a year for a few hours, but have never figured how how to hold onto that or what triggered the remission.
    Oddly, I always think I am cured forever, then soooo disappointed (to put it really, really mildly!) when the Fibro returns. Also, the pain leaves during these brief and very, very far between remissions.

    You are the only person I have ever heard refer to it as being in the shadows, other than myself.

    Ayway, thanks for this post.

  13. JewelRA

    JewelRA New Member

    "It's discouraging not to feel the immediate (and joyful) connection with Life that I once had, but I do not know anything else to do for this."

    Boy, does that sentiment strike a chord with me!

    I have thought the same exact thing myself.

    Sometimes I question, "Am I still alive?" "Am I still sane?" "Do I still love my husband/children/mother....etc?" "Will I ever feel joy again?"

    I try not to dwell too much on those questions, or I could really lose it...
  14. jaynesez

    jaynesez New Member

    dealing with the same issue, body there, brain not, and I wasn't going to add my two cents but I did something so oddball the other day that I will add it so that everyone else understands that we are not crazy, just, well, I'm not sure! I dropped off my son & his friends at his high school for a football game. Now, I have lived here for my whole life, know the streets like the palm of my hand. I somehow got turned around and drove for 20 min. to the other end of town, and would have kept going except I noticed the lanes (left only lane) were different. I looked up and was like, where am I? Then went, oh %$#, how'd I get here! I was driving fine, just sort of out of it, and it is very scary. In my defense, the city I live in is widely spread out, was in a residential area and all the streets look the same, but still! I've also experienced the sudden "where am I" and once got lost in the next town over (which I know well) at night. This is one of the scariest things I've experienced! I've also lost my perfect ability to spell, and have dyslexia of the fingers and speech.

  15. gkb440

    gkb440 New Member

    i understand what you are conveying and so do many many more

    dont feel lonely dont even feel anything but whats happening to you
    very few doctors are interested because theres more loot to be made elsewhere
    join [me cfs community comfort can be found there]and big things are planned for the future
    dan moreli is the founder many very principaled people are involved they as you and i are going through the same thing
    i find comfort by being with these people i hope you will to cheers geoff

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