1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
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I want my life back..................NOW

Discussion in 'General Symptoms' started by SaveMe, Mar 8, 2011.

  1. SaveMe

    SaveMe *****

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    the city
    Can someone give me some suggestions. My whole body is dysfunctional; it has abandoned me.

    1. Complete Exhaustion- wiped out, drained, depleted, sometimes housebound
    Lost ability to participate in social events and countless other opportunities. Missed days of school, what happened to my internal energy supply?
    2. Widespread muscle pains
    challenge to walk up stairs, flare-ups, severe & all over
    3. Headaches
    migraines (more freq. at night)
    4. Brain fogs & Cognitive dysfunction
    (attn./concentration) can stare blankly for long periods of time, always ask where did I park the car? (short term memory loss) A distinct shift in cognitive function during onset. Disorientation- lost in amusement park. Where am I? Spacy. Metal fatigue. Sluggish thinking. Slow information processing. constant state of confusion, I cant think.
    Sudden Dementia/Fog out of the blue? 19 years of age.
    5. Un-refreshing sleep
    I wake up feeling exhausted, numerous sleep fragmentations
    6. P.E.M
    Exercise results in a crash the following day
    7. Excessive mucus in my throat that I spit up
    Viscous saliva all the time
    8. Sunlight (Photophobia) & Noise sensitivity (irritability)
    Light really hurts my eyes, eyes tear up easily, must wear sunglasses now
    9. Initial rapid, sudden weight loss during onset of virus
    15-20 lbs of weight loss
    10. Loss of strength
    (Can’t flex to make a strong fist) What happened to my physical strength?
    11. Near Death feelings
    Episodes of feelings that im approaching death--horrible malaise
    12. Dizziness/Pulsating/Pounding/Faint head (aggravated by standing from supine position)
    Orthostatic Intolerance
    13. Pain & Temperature dysfunction
    Warmer (hot flashes)/colder than usual, a pat on the back is painful.
    Cold feet & hands (poor circulation)
    14. Swollen lymph nodes
    In neck area (confirmed by doctor)
    15. Cartilage grinding
    Crackle & popping sound in neck (especially stiff in the mornings)
    16. dramatic events during “onset”- Electrical shock/brain zaps upon onset (jolting me up from sleep)
    Similar to what people experience when they withdraw from an SSRI
    17. Feeling feverish, but never truly having a fever
    18. I.B.S
    Change in bowel habits, burning sensation in throat from acid reflux, excessive gas build-up
    :D
  2. jenbooks

    jenbooks Guest

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    Suggestions: Eliminate all grains of all kinds.
    And if possible try a stone age or caveman diet: low sugar fruits, all kinds of healthy veggies and salads, and meat/fish.

    Test your home for mold spores. If high--could be causing many of these problems or exacerbating them.

    Find someone with a mild portable hyperbaric chamber and try a session--try a half hour first, and see what it does for you.

    Get a Meyer's cocktail push--google that.
  3. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Best advice I can give you is to try to find a knowledable CFS/ME specialist to work with you to try some things.
    2/ Pick on one symptom at a time in trying to find a treatment for it. eg things like IBS can be helped.
  4. laura

    laura Senior Member

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    Southern California
    Sorry things are so hard for you now. CFS definately sucks. I want my life back too!! Personally I'd rather be hiking up a mountain right now but alas, it is not to be...

    I like what has been said so far. My addition:

    A. What helped you before?

    B. Go back to the beginning, focusing on
    1. pacing
    2. rest
    3. more pacing...
    4. more rest...
    5. finding a good health practitioner(s)

    6. diet changes -- perhaps an elimination diet to find what your body likes and doesn't like. Could start with the basic allergens: wheat, corn, etc. Also, does your body like food better if it is cooked? raw? etc.

    I follow the blood type diet, it helps me. I can tell what foods my body likes because I don't get a heavy/fatigued feeling afterwards. probiotics also helped.

    7. detox, detox, detox -- infrared sauna, if possible, or regular sauna; eliminate toxins from environment, add nature. more the better. also, some house plants detox air. buy a high quality air purifier.

    8. supplements. what has worked for you? so many great suggestions on this forum and on the web. if you take a lot now, maybe you need to clear the body of them all for a short time, start fresh. sort of an elimination diet for supplements.
  5. SaveMe

    SaveMe *****

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    the city
    thanks laura,
    you said encouraging, more so than my ex. She basically dumped me because of this illness. :(
    suana, yoga, tai chi are on my list of things to do
    my diet is solid.
    no supplement really had any effect on me, except for Malic acid with magnesium for my muscle pains.
    since ur in cali, did u give ldn a try?
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    did you get tested for low testosterone?
    thatwas one thing ME did that at least had a treatment (screwed up pituitary gland, which sends out a control hormone for testosterone, no control hormone = no testosterone or sort)
    testosterone shots didn't "fix" ME, jsut made it a LTO more bearable :)
  7. Mark

    Mark Acting CEO

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    Sofa, UK
    If you do sauna, make sure it's a far infrared sauna and beware public saunas...and take it gently. If you have subtle chemical sensitivities, the risk with a public sauna is that your pores are open and you absorb whatever perfumes and other toxins the other people who used the sauna were wearing.

    If you do yoga and tai chi, again remember to take it gently.

    I definitely wouldn't take that for granted. What would conventionally be "a healthy diet" isn't the same for us at all. For me: according to the tests from the hospital, I have no allergies at all. But private tests confirmed a huge range of subtler sensitivities that I identified myself through trial and error. I can only eat beef, potatoes, peas and (rather luckily and unusually) milk, cheese and fruit. Anything else gives me indigestion, diarrhoea, fatigue and worsening of all symptoms. There's no doubt about this, over years and years it's been the same, and anytime I try to change it, and eat my favourite foods, it always has the same result. Do you have any stomach upsets, or diarrhoea? If so, then your diet may be solid, but not necessarily right for you...

    There's a big green light for you! Magnesium is a very popular treatment for ME/CFS, as part of a controlled supplement regime. If magnesium worked well for you, it's a good idea to stick with that and follow up on it. And not all supplements are the same - so if there's a specific product that had positive effects, it's not a bad idea to stockpile some supplies while it's still available...

    Did you try CoQ10 and B12 as well? If magnesium was good for you then you might notice positive effects from them as well.
  8. Merry

    Merry Senior Member

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    Columbus, Ohio, USA
    Hi, SaveMe.

    I belong to mailing list for info on ME/CFS and I just looked at the messages and saw that someone recommended a website. I have not checked it out myself, but one of the people offering advice is Dr. Lapp. He specializes in CFS treatment, so the information is likely to be useful.

    Here's the url:

    http://www.treatcfsfm.org/

    I haven't read all of the responses to your threads, so if someone else has offered this information, pardon me.
  9. SaveMe

    SaveMe *****

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    the city
    Dr Lapp is 380/hour and he usually sees patients for 3 hours over 1000 big ones! This illness is expensive even with the best insurance!!
    However they are doing the ampligen trials, so that is good news. thanks for that site-- I didnt know all this info till now :O
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    WOW!! that is one of the best self help sites on cfs i have seen and they dont make unrealistic statements like curing cfs etc but talk about improving peoples function etc. A very good site for people who are just starting out with cfs.
    good find!!

    cheers!!!

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