Is Brain Fog your worst symptom of ME?

Discussion in 'Fibromyalgia Main Forum' started by Aelf, Feb 10, 2009.

  1. Aelf

    Aelf New Member

    I am curious to see how many of you share brain fog as your worst symptom.

    For me, it BY FAR out ways any of the other symptoms of CFS/ME, including fatigue.

    It's as if I am living in an alternate reality now, where a heavy weight is inside my head - although I've found this feeling extremely hard to describe.

    I am young (22) and otherwise healthy... I can even do intense exercise now, which I know is not characteristic of CFS/ME.

    I have been experiences this for nearly 3 years now.

    I am wondering if anyone else has similar experiences, or know someone who does. Please respond!

  2. ladybugmandy

    ladybugmandy Member

    i have had CFS for almost 17 years now and have always had the fog be my worse symptom. it is horrible, like my head is always full of cotton. i have wanted to take my life because of it so many times. it is like i am not even in my body. i also have neck pain and cramping.

    it is a tiny bit better now because of antiviral therapy, although on some days it gets severe again.

    some researchers say that 20% of people with neurocognitive problems have HHV6A encephalitis. have you tried antiviral therapy?

    since you have been sick only 3 years, your chance of recovery is excellent.

    best of luck

  3. sleepyinlalaland

    sleepyinlalaland New Member

    I think maybe everyone's worst symptom may be different.

    But I myself certainly relate to how you describe "brain fog"...the mental heaviness, and feeling of alternate reality.

    Other than chronic very tight muscles, I feel that this fog is probably my worst symptom. I am much older than you, but I remember feeling similar to you even when I was your age.

    Personally I believe this mental state to be related to sleep; either lack of it or very poor quality sleep. How would you describe your quality of sleep??
  4. Aelf

    Aelf New Member

    @ jamin

    I supplemented with grapeseed extract for a long period, but I never noticed any improvement of my symptoms during that time. However, GE contains both resveratrol and OPC's which are excellent for overall health. I still take GE occasionally.

    @ ladybugmandy

    I have not tried anti-viral therapy (yet), as I just recently got off my medication. I was on low dose corticosteroids for nearly 2 years. This medication gave me a floor for my fatigue, and helped me to function more 'normally', but did not put a dent in the brain fog. I am going to discuss with my PCP on testing for HHV6A and anti-virals. This is probably the direction I will head next.

    @ sleepyinlalaland

    I sleep well. I even used a CPAP machine in the past, just to see if it would alleviate the symptoms, and it did not after several months use. Now, I sleep without the CPAP, and I have no problems. I had a sleep study done a while back, and everything was normal.

    Thanks for the fast responses, your input is greatly appreciated.
  5. bobbycat

    bobbycat New Member

    Pain. I have cognitive problems due to the doctors not being able to control my pain. If my pain was controlled and I did not have to be on so many meds I think it would help with my brain fog and even more with my memory and the knowledge I use to have. PAIN is the threshold to most of my problems.
  6. georgianewyork

    georgianewyork New Member

    Hi. Brain fog for me only came along and still does on occasion when all my other symptoms are in full swing. I noticed it was severe during the two of the seven years I have had CFS/ME. Mine seemed to be intense when the low grade fevers went on for months endlessly.
    Chills, nausea, fatigue and those relentless fevers had been my headliners.
    All the best to you,
  7. heapsreal

    heapsreal New Member

    Look into nootropics like piracetam and aniracetam, these can be helpful
  8. onedaysoon

    onedaysoon New Member

    I am so fogged now, but I just wanted to say yes. It is the same for me. The fog is daily and horrible! It seems like I could do SO much more if I didn't have that part? :eek:(

    Good night!
  9. equanimous

    equanimous New Member

    The things that have helped me most with brain fog are:
    -Essential Fatty Acids (Omega 3's and Evening Primrose Oil)
    -Coenzyme Q10
    -Avoiding certain foods, particularly sulfur foods like garlic which tend to redistribute mercury

    It can be really hard/frustrating to communicate what brain fog is to those who don't have CFS/ME. I've used so many different metaphors, etc. like a thick saline solution washing over my brain or a heavy cement congealing in my head. The physical feeling of it is awful, but what's worse, imho, is the accompanying lack of cognitive functioning. I hope you find something that helps you with your brain fog. Have you done thorough nutritional testing to see if you are lacking certain nutrients, enzymes, etc?

  10. Waynesrhythm

    Waynesrhythm Member

    Hi Chris,

    Thought I'd paste the following post from another 22-year-old and also had CFS symptoms for a relatively short time. I've had the Atlas Profilx treatment also and did notice an improvement in my cognitive function. I still have a lot left, and am currently researching various enzyme formulas that can cut down or eliminate fibrin buildup in the blood that can cause serious cognitive difficulties. The entire thread is located at:

    Best, Wayne

    6/15/07 3:46 PM atlasprofilax worked

    hi all, i went down to nevada city yesterday and my life will never be the same! Michael Hane has the touch of a healer, i truly believe God is working through his hands. the treatment hurt a little, but about 20 seconds after it was done, my arms started to buzz like crazy and a weird zap went from my neck around my jaw and straight down my spine. my body did this giant heave, and then i felt my entire body let go and relax. it felt like someone lifted 100 pounds off my shoulders. my vision went double and my arms buzzed for about 45 minutes after it was done. my head feels like its floating on a cloud and i laid down and was actually comfortable for the first time in 3 years. after a few hours i felt the fog lift and i could actually think straight, it was amazing!! anyway long story short i never suspected it was my neck, because i never felt much pain there untill i felt nothing at in NO PAIN ANYWHERE! i dont know if this will work for everyone,im 22 and havent had fibro/cfs for as long as alot of you guys have but it sure worked for me. ive got energy, control of my body and a clear head. He even gave me a discount because of how far i had to drive to get to him. if you can, GO DO IT!

    P.S. Lyme bacteria can also cause significant cognitive dysfunction; I have tested positive for Lyme and hope the enzyme formulas I'm investigating might help with both fibrin buildup and Lyme bacteria.[This Message was Edited on 02/11/2009]
  11. gapsych

    gapsych New Member

    Although fog is certainly a problem, I think the fatigue trumps it. When I am in more pain/fatigue, I become foggier.

  12. Waynesrhythm

    Waynesrhythm Member

    Hi Chris,

    You may also want to consider Hughes Syndrome, which I've just begun researching more in depth. I posted the following on another thread, but thought I'd paste it here as well.

    Best, Wayne

    From the Hughes Syndrome Foundation. There were other symptoms listed, but these two were ones many with CFS/ME often experience.

    Memory loss

    When the brain is starved of oxygen (blood supply) it only has a limited number of ways of complaining, and a common symptom of Hughes Syndrome is memory loss. Many patients feel that they are developing Alzheimer’s disease when they can’t remember names of friends and family, forget their shopping lists and get their words and sentences muddled. One of the most dramatic observations in the whole of medicine is the improvement of memory (and the disappearance of the headaches and ‘fog’) which patients observe when blood thinning medicine is started.

    Gastrointestinal disorders

    Hughes Syndrome can affect the blood supply to the intestines, causing abdominal pain, fever and blood in the stool. Antiphospholipid antibodies can also cause a condition called Budd-Chiari syndrome, in which a blood clot prevents blood from flowing out of the liver and the person may then experience nausea, vomiting, jaundice (yellow skin), dark urine and the swelling of the abdomen.
  13. Aelf

    Aelf New Member

    Thanks for your responses, Everyone. Sorry I did not get back to you earlier, I had some things to attend to in real life (this an accomplishment in itself!)

    bobbycat and georgia - it appears our symptoms are somewhat different. I am sympathetic towards your suffering though, I can only imagine how bad this illness can manifest itself..

    Hearpsreal - I've researched these nootropics before, and may give them a shot again... Thanks!

    onedaysoon - The same way I feel...

    Liz - I am completely obsessive about nutrition, and I take a high quality cod liver oil supplement for Omega-3's. I also supplement with Vitamin D, and a few antioxidants. I have been to a nutritionist before, and they put me on all these expensive supplements that didn't accomplish anything. Since then I have just done my own research.

    Wayne - I am healthily skeptical of most things, the atlas proflix treatment included. However, I appreciate the input. I have been tested for lyme before, but the tests were negative (perhaps a false negative though? - I've read wierd things about lyme testing and may have this one run again).

    Hughes disorder does not quite fit my symptoms - I have no memory loss. It's as if my brain WORKS fine, it just full of cotton balls or something.

    Gapsych - My fatigue is not nearly as bad anymore, but when it is bad the fog is overbearing. I think most people's symptoms tend to fluctuate together..

    I am still wondering if anyone has a case very similar to mine: Young, no exercise intolerance, no sore throat or flu like symptoms, sudden onset, with the main symptom being 'brain fog'. I've tried almost every remedy under the sun, but to no avail.


    LISALOO New Member

    Nope, fatigue by far!!!! Brain fog comes and go, but never fatigue. But then you can exercise.