Discussion in 'Fibromyalgia Main Forum' started by 1purplepug, Jul 21, 2008.

  1. 1purplepug

    1purplepug New Member

    does anyone else have physically documented dementia as a result of CFS?
  2. momof4kids68

    momof4kids68 New Member


    My mom battled cancer for 11 years. 3 years ago, she went into dementia due to her bodies electrolytes being out of whack. At least that is what the doctors said.

    This was partly due to chemo & radiation and partly to the fact that she had slowly starting eating less and eventually ate nothing. Then she stopped drinking water also. She was diagnosed with her third tumor that year. So between the medications & not eating, her brain just went into a delirium.

    After testing, they were able to determine what her body was missing, and once they gave her the needed electrolytes her dementia was greatly reduced.

    After watching my mom deteriorate so quickly, I did some research and yes the doctors were correct. Normally as we grow older we need more medications for different reasons and our appetites naturally decrease. So your body can be depleted over time.

    And it can also happen due to trauma and other diseases.

    This is from the website Medlineplus, under .gov, not .com! It is listed under "Dementia Due To Metabolic Causes".

    These are the electrolytes that keep our bodies & brains functioning normally.

    * Ionized calcium
    * Ions
    * Radioactive iodine uptake
    * Serum calcium
    * Serum chloride
    * Serum magnesium
    * Serum phosphorus
    * Serum sodium
    * Sweat electrolytes

    It is important to keep a balance of electrolytes in your body, because they affect the amount of water in your body, blood acidity (pH), muscle action, and other important processes. You lose electrolytes when you sweat, and you must replace them by drinking fluids.

    Sometimes it is so hard to get our doctors to do any tests once they have diagnosed CFS or FM.

    I have often wondered if this is the reason I have such horrible & vivid dreams and why the "little voices" in my head never shut up.

    (I don't mean the one who say "kill" LOL LOL, I mean the one that doesn't let me have self confidence or self worth and that keeps me asking the "why me?" questions for which there is no answer.)

    Take Care,


    [This Message was Edited on 07/23/2008]
  3. glenpr

    glenpr New Member

    yes I had over 5 hours of neuropsychological tests done.
  4. Waynesrhythm

    Waynesrhythm Member

    Dear Anchorholds,

    I've been wanting to reply to your post in which you describe some of your cognitive problems. I haven't until now because I haven't really known exactly what to say (still don't). Mostly I want to mention that I really appreciated some of your descriptions you made and how I could relate as they are very similar to mine.

    Such as: "I've had severe and tormenting cognitive problems"; "the torment of it can be life threatening it can be so painful--years of being semi-conscious or feeling drugged"; "not being able to comprehend written words or other times not being able to comprehend speech. Years of being in a very altered state of consciousness--the least amount of mental concentration would fry my brain."

    I took some time this past Tuesday to organize some things in the garage from when we moved last fall. Forcing myself to think and organize for several hours has left me feeling incredibly incapacitated. My bedroom is now in shambles, sticky notes helter skelter all over the place, no rhyme or reason to much of anything in my immediate environment.

    My latest guess as to why I endure this "dementia" is because of a long-standing Lyme (or similar) type of infection. I've have also improved from some of my lower points, but it is still a constant struggle.

    Anyway, I may be starting to ramble a bit here. Again, thank you for your post. I wish you the best as you look for things that will help your circumstances.

    Kind regards, Wayne
    [This Message was Edited on 07/27/2008]
  5. PVLady

    PVLady New Member

    I found the following information. CFS dementia is mentioned in this article...

    Comment: For many years patients with CFS have said that their cognitive symptoms are among the most disabling symptoms they experience. In the early 1990’s Dr. Sandman used the term “CFS dementia” and everyone was horrified, including me. But it is now clear that he was correct, depending upon how you define dementia. See below for the full article...

    Information and Support for the ME/CFS/FM Community
    David S. Bell MD, FAAP, Editor
    Volume 2, Number 3: July 2005

    click here for a print-friendly version


    Cerebral Atrophy
    Literature Review: The Presence of Cerebral Atrophy in CFS
    Literature Review: Cognitive Symptoms of CFS
    Literature Review: Abnormal Cerebral Perfusion in CFS
    Disability Study
    To Subscribe


    I do not like to deliver discouraging news. But for many years the medical world has been dismissing CFS/ME because there has been no science to say that this illness is serious.

    Now that scientific information is pouring in abundantly. Is the medical world going to continue to maintain that ME/CFS is a trivial psychosomatic problem of neurotics and hypochondriacs?

    In this issue of the Lyndonville News I would like to summarize several studies, two of which show the presence of cerebral atrophy. In lay terms, that means that the brain has decreased in size, presumably because of death of brain tissue.

    The other reviews outline a new study proving the cognitive symptoms and some older studies demonstrating decreased blood flow to the brain (cerebral hypoperfusion). In my opinion these issues are connected or linked.

    Literature Review:
    The Presence of Cerebral Atrophy in CFS
    Reference: de Lange F, Kalkman J, Bleijenberg G, Hagoort P, van der Meer J, Toni I. Gray matter volume reduction in the chronic fatigue syndrome. NeuroImage 2005;26:777-781.

    In this study, the authors studied 28 patients with CFS and 28 healthy controls using an automated, “user-independent” magnetic resonance imaging (MRI) voxel-based morphometry (VBM) technique for measuring brain volume and tissue concentration.

    They were also able to quantify the activity reduction of the CFS patients using a technique called actinometry. For better control they restricted the study, both patients and controls, to women.

    They found that the volume of gray matter of the brain was significantly decreased in comparison to the healthy controls, (p < 0.001), and amounts to a reduction in brain tissue of 8% on average, and appears to be a global phenomenon rather than a local problem.

    The amount of brain tissue reduction was correlated to the severity of the activity limitation. Whether this is a cause or consequence of CFS is not known.

    Reference: Okada T, Tanaka M, Kuratsune H, Watanabe Y, Sadato N. Mechanisms underlying fatigue: A voxel-based morphometric study of chronic fatigue syndrome. BMC Neurol 2004;4:14.

    In this study MRI was used allowing “voxel-based morphometry” of 16 patients and 49 healthy age matched controls.

    CFS patients had reduced gray matter volume, primarily in the prefrontal cortex bilaterally. The authors state, “We observed a significant reduction in gray-matter volume in the bilateral prefrontal areas of CFS patients….In comparison to healthy controls, there was an average of 11.8% volume reduction in CFS patients.”

    Literature Review: Cognitive Symptoms of CFS
    Reference: Lange G, Streffner J, Cook D, Bly B, Christodoulou C, Liu W, et al. Objective evidence of cognitive complaints in chronic fatigue syndrome: A BOLD fMRI study of verbal working memory. NeuroImage 2005;26:513-524.

    Many studies have been ambiguous about the cognitive difficulties in CFS. In this study, the authors, using blood oxygen level dependent (BOLD) functional MRI imaging show that CFS patients are able to process challenging information, but utilize more extensive cerebral networks and must exert greater effort to process auditory information.

    They state, “Our findings provide objective evidence for the subjective experience of cognitive difficulties in individuals with CFS.”

    Comment: Many standard neuropsychological testing results have been considered “normal” or “consistent with depression”, primarily because the areas studied were not the areas of impairment in CFS.

    If neuropsychological testing were to be done, the focus should be on ability to maintain attention, verbal processing speed, reaction times, and the ability to acquire new information.

    For a review of the neurocognitive studies, see Jason L, Corradi K, Torres-Harding S, Taylor R, King C. Chronic fatigue syndrome: the need for subtypes. Neuro-psychology Review 2005;15(1):29-58. Hopefully this study by Lange et al will put to rest the controversy of the presence of cognitive deficits in CFS, because they can be seen on fMRI.

    Literature Review: Abnormal Cerebral Perfusion in CFS
    Reference: Schwartz R, Garada B, Komaroff A, Tice H, Gleit M, Jolesz F, et al. Detection of intracranial abnormalities in patients with chronic fatigue syndrome: comparison of MR imaging and SPECT. American Journal of Roentgenology 1994;162:935-941.

    This paper was one of the first to look at the incidence of both the “high intensity” (bright) spots on the MRI scan and the brain blood flow abnormalities in patients with CFS.

    The MRI abnormalities were present in 50% of patients compared with 20% of controls. The SPECT abnormalities were common in CFS at 81% vs 21% in controls. The authors implied that the SPECT seemed to correlate with the clinical picture.

    There are now many papers on SPECT scans and cerebral perfusion studies. For a review I would suggest: Jason L, Corradi K, Torres-Harding S, Taylor R, King C. Chronic fatigue syndrome: the need for subtypes. Neuropsychology Review 2005;15(1):29-58

    Comment: For many years patients with CFS have said that their cognitive symptoms are among the most disabling symptoms they experience. In the early 1990’s Dr. Sandman used the term “CFS dementia” and everyone was horrified, including me. But it is now clear that he was correct, depending upon how you define dementia.

    Usually, we associate the term dementia with Alzheimer’s disease, which over a period of a few years converts a vital, intelligent person into one unable to recognize family members.

    This does not occur in CFS. Over the past twenty years I have heard patients say that their abilities are more and more limited. I am sure this is true, but their speech was normal, they were still able to take care of themselves reasonably well.

    Because they had adjusted to the ravages of the illness, some were even doing reasonably well. These observations are not changed by the recent publications. What we are now seeing in the medical literature is evidence that CFS is a neurological disease and some patients have reduction in brain gray matter (cerebral atrophy).

    I would feel that the results mentioned above are linked to the poor prognosis seen in many of the CFS long term studies.

    For those persons with severe CFS persisting for more than five years, the likelihood of recovery is slim. I would assume that the neurological damage that causes the symptoms is also causing the cerebral atrophy, and that is not likely to be reversed.

    What is causing this cerebral atrophy? We do not know is the simple answer.

    But for years we have seen abnormalities in the MRI scans, then SPECT scans showing reduced blood flow to the brain.

    Sometimes I hear neurologists say that the small “hyperintense” MRI lesions can be due to vascular or embolic phenomena (tiny blood clots or strokes), and this explanation is consistent with the reduced blood flow seen on studies. Like CFS, multiple strokes will cause cerebral atrophy.

    Could it be that the reduced blood flow to the brain is the cause of the neurologic injury? Is there a hypercoagulable state causing these problems?

    Is there “sludging” of the blood flow in the brain because of reduced circulating blood volume? We don’t know and it is time that serious research is initiated on scale that occurred in multiple sclerosis years ago.

    If the cerebral atrophy is due to reduced cerebral blood flow, it is theoretically preventable by opening the cerebral vessels and increasing the circulating blood volume.

    I can be criticized for speculating here, but I freely say that I do not know. But we need the studies to find out.

    ME/CFS is a debilitating disease of the central nervous system that causes widespread disability. Unlike Alzheimer’s disease, ME/CFS affects young people in the prime of their life and affects children as well.

    It should no longer be considered a trivial problem. I am unhappy with these new research developments, but I find them hard to refute. But it is even harder to witness a medical world that continues to speculate whether CFS is “real” or not.

    Disability Study
    A person I have known for several years is seeking information about ME/CFSers disability experience. I am wholly in support of her project.

    She writes, "I am a writer seeking contact with CFIDS patients for an account of CFIDS disability issues. I would like to interview people willing to share their thoughts and stories concerning any or all of the following:

    1) how your illness has impacted your ability to work; 2) how having CFIDS has affected your sense of identity and your capacity to live a normal life; 3) what kinds of experiences you've had negotiating disability issues with the medical community and with government and private insurance carriers; and 4) what kind of reception you've met in publicly disclosing your illness and in handling its impact upon friendships and family.

    I can promise neither fame nor remuneration for your generosity, only my earnest effort to respect your words, experience, and ideas.

    I taught college English for 27 years and have had CFIDS for over 20 years. I now live on SS disability and the income from a very small writing business. I will be as timely as possible in my replies to you. Thanks to all who write: *SCRIBE/P.O. Box 4/Slaterville Springs, New York/14881."

    To Subscribe: If you wish to either subscribe or unsubscribe to the Lyndonville News, go to and follow the instructions.

    The e-mail subscription is free, while the hard copy sent by mail costs.

    Disclaimer: Any medical advice that is presented in the Lyndonville News is generic and for general informational purposes only.

    ME/CFS/FM is an extremely complex illness and specific advice may not be appropriate for an individual with this illness. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.

    ____________________________________________________________From Dr. Bell's website......

    I have CFS/FMS/MPS. I am very sick, with no good medical care… But what is really hurting tonight is that article.

    My tests are showing diffuse brain shrinkage and I have gotten sicker and sicker the past 3 years. I first got FMS in 1994. Anyway that article has me feeling hopeless, because my brain isn't working anymore and I'm getting worse and worse and have no $ to get good help. I feel really hopeless after reading that article.

    I am alone, family not close - alone and scared. Is there any hope?

    Attempted Answer: The periods of despair that persons with this illness experience are beyond description. I apologize for the article of cerebral atrophy and progressive cognitive difficulties, but unfortunately they are true findings for some with the illness.

    I apologize for rubbing salt into the wounds. When will the medical providers begin to approach this illness with compassion? I don’t know. Is there any hope? Absolutely yes. And it is not a false hope. I remain convinced that the problems with this illness are reversible, and someday we will find them.

    [This Message was Edited on 07/28/2008]
  6. homesheba

    homesheba New Member

    that is how i feel more lately-
    def. worse in speaking and memory.
    i am becmning more recluse cause
    i feel so stupid with others now.
  7. LittleBluestem

    LittleBluestem New Member

    Can you tell me what kind of testing was done on you mother to determine what her body was missing. My mother has (so far) mild dementia and I have wondered how much of it was due to her poor eating habits. If we could get some tests done, maybe she would believe us and do something about it.
  8. momof4kids68

    momof4kids68 New Member

    Sorry I don't remember what exactly the tests were but your regular pcp can order blood work done to test levels of the electrolytes. Check out that website for medlineplus. There is a lot of information on it there.

    I wish I had been able to pay more attention. Since getting my diagnosis, it seems like my doctors just chalk up all pain, discomfort, etc to the FM. I started seeing a new Rheumy & I go back in 2 weeks so I'm going to see if I can get him to run some blood work and I'll ask him about electrolytes too.

    Take care

  9. Waynesrhythm

    Waynesrhythm Member

    Hi again Anchorholds,

    RE: "It is dementia and it is tormenting. I think people are afraid to call it dementia. I keep hearing everyone say brain fog, but that term doesn't even begin to describe it."

    I think you're right about people being hesitant to call their "brain fog" dementia. I myself have been one of those people; it's almost too hard to admit sometimes. I think the reason your post touched me is because you verbalized what I'm sometimes hesitant to do.

    I can relate to your mentioning about feeling alone on this board. I am amazed at some of the research some people are able to do, comprehend it, analyze it, and then come up with some kind of action plan. Some people even have the energy to debate some of it! It wears me out just doing little baby steps at a time.

    It seems there are as many different health syndromes on this board as there are people who post here. Yes, we have similarities, but some people struggle getting through their work day and taking care of their family. Others are almost completely incapacitated. Most are probably in between, and cycle in and out of various improvements and setbacks.

    One thing that helps me cope with the dementia is to remember that the brain and mind are just tools that we've been given for a brief time, and we should probably all learn not to identify too much with them. Not easy to do in a culture that puts mental and intellectual capabilities at almost an apex of achievement. When I can take a step back from the dementia, I can generally find myself settling into a peace that is not dependent on the mind.

    Thanks much for your reply to my reply. :)


    [This Message was Edited on 07/29/2008]
  10. bobbycat

    bobbycat New Member

    Had neroulgistphycology test mine is called Cognitive problems but it is documented. Thanks, Bobby She asked me if I have considered disabilty.
  11. spacee

    spacee Member

    Pricey $600. Could be higher if the tests were longer.

    My hubby wanted me to have an MRI done first. I explained my thinking about it this way. We have a son with ADD. An MRI or Brain Scan would not have been able to diagnose him.

    That is the way I feel about my brain. The neuropsych test first. THEN if the psychologist feels it warrants a MRI or Scan OR feels it warrants meds, he will refer me to a neurologist.

    I have had a lot of these symptoms since I got sick 22 years ago. I am worse because I am older now (58).

    Why am I getting this done? First of all, there might be a med that can help like Provigil. Second. I am so d**n tired of people expecting my brain to be normal since I look so normal. I really need proof for my own peace. It won't stop the naysayers but it might give them food for thought.

    Right now my brain is my worst symptom.

  12. 1purplepug

    1purplepug New Member

    Hi Anchorholds, thanks for responding to my question on dementia. I had it diagnosed with a brain spec......having had Chronic Fatigue Syndrome for 17 years this is just one of the many results from it. My CFS doctors says I now have a type of dementia caused from the CFS, but it's not the type of dementia that will progress fast like Alzheimers. I was diagnosed two years ago and I definitely notice cognitive changes and even some personality changes, and just wondered if it really was going to be slow progressing like he says. I am only 54 and looking forward to a good number of years still with hubby, kids, and grandkids. Just wondered how others were making out.
  13. Waynesrhythm

    Waynesrhythm Member

    Hi Anchorholds,

    I've often thought about (with gratitude) this conversation we had on this thread last year. I just re-read it, and thought I'd bump it up for anybody else who might might appreciate it.

    Warmly, Wayne
    [This Message was Edited on 09/27/2009]
  14. Waynesrhythm

    Waynesrhythm Member

    Hi Glen,

    I've always been grateful to Anchorholds for her honesty and forthrightness in discussing her views on dementia. I found it to be very helpful in how I view my own cognitive difficulties.

    I too have noticed some personality changes. It varies from day to day, but I tend to move and think slowly. Hopefully that means I'm thinking more carefully. :)

    I'm glad to hear you appreciated having this bumped. Thanks for your note.

    Warm Regards, Wayne
  15. Waynesrhythm

    Waynesrhythm Member

    Dear Anchor,

    I'm sorry to hear you're leaving and that we may no longer be in touch. I don't know if you're specifically leaving this board, or all boards. But if you would ever want to get in touch with me, the easiest and likeliest place would be over on Cort's new board. The link is:

    You've been one of my favorite people here on this board, and I will miss you. Your posts about your own struggles with dementia really touched me and actually helped me get into a better place about my own cognitive (dementia) difficulties.

    I wish you the very, very best as you move forward. May the Lord bless and keep you; may the Lord make his face shine upon you and be gracious unto you; may the Lord lift up his countenance upon you, and give you peace.

    Be well dear friend.

    Love, Wayne[This Message was Edited on 09/28/2009]
  16. Waynesrhythm

    Waynesrhythm Member

    Hi Anchor,

    Just wanted to let you know I got your last message. Thank you.

    RE: """I really need to get my focus right and remember where the answers to my healing will really come from. I know God still heals and I need to look to Him."""

    *** I personally believe that all healing comes from God, or Spirit, or whatever name people would want to call the Spirit of Life. I also believe God works through all kinds of different avenues, whether these avenues would be considered conventional medicine, alternative medicine, personal connections/correspondence, posts on message boards, even advertisements.

    I think when things come our way that we're supposed to follow up on, they will in one way or another "light up for us". Heck, I even pay attention to advertisements to try to ascertain if there may be important information in them that may somehow help me with my own health situations. (I don't spend too much time on them however). :)

    That's why I continue to peruse these boards. Looking for those things that light up for me. But I also do what it sounds like you're doing. Taking a break, and looking patiently to see where I should be putting my attention next. In my own experience, it seems life tends to go in cycles, and we should try to catch the active cycles when we can, and be restful and content during the less active cycles. I believe both parts of life's cycles are important in our own healing.

    Whatever phase you find yourself entering, it sounds like you're confident it's the right step for you at this time. And so again, I wish you all the best on your journey. And that your discoveries along the way bring you all that you are looking for.

    ~Peace and Love~


    ETA I feel grateful we've had a chance to exchange some greetings and best wishes. Feels sort of synchronistic. :)[This Message was Edited on 09/28/2009]
  17. gapsych

    gapsych New Member

    Very interesting article.

    I often feel that I have developed a learning disability.

    When I worked with students with ADD, the psychologist would observe the student in the classroom to see how he/she filters background noises. There was also a test which showed if students performance is different in a noisier environment. The Speech Therapist also did this.

    I do not remember the name of the test but remembering being impressed that this was done.

    Now we know that adults can also have ADD where even 20 years ago it was thought you grow out of it. Many parents have been diagnosed when taking their children to be evaluated for ADD and realized they had the same difficulties.

    NOFOOL- Did Dr. Goldstein have specific recommendations one how to reverse the cognitive problems?