Could this be Chronic Fatigue Syndrome?

Discussion in 'Fibromyalgia Main Forum' started by matthew76, May 2, 2008.

  1. matthew76

    matthew76 New Member

    Hi, all:

    I am a 31 year old male who was recently diagnosed with severe sleep apnea. I have been on the CPAP for over 3 weeks without much improvement in how I feel. I'm beginning to wonder if my apnea came with CFS or Fibro. All of my problems started in November 2007, when I got a flu that had constant gas and severe positional dizziness with vomiting. During this period, my head suddenly started feeling strange, like it lacked enough oxygen or something. Then the sleep problems began. It took me a while to even get my appetite back, and while I'm doing a little more now, most days are pretty much the same. Here are my symptoms:

    Sleep related:

    I often have insomnia or broken sleep. My sleep also does not feel very deep, even though I dream on some nights, yet it's hard to wake up. Feels like I could stay in bed forever. Sometimes have annoying half awake/half asleep periods towards wake up. I feel worse when waking up than when I went to bed. Never really feel fully awake. I don't really sleep during naps. Feel most awake when I'm about to go to bed.


    Lots of symptoms here. I wake up with my head spacey, foggy, achey, and full - kind of like there is brain damage, but the CAT scan showed no abnormalities. I have lots of trouble concentrating, doing normal activities, my thoughts are dulled (especially in the morning,) and feel mentally dreained. My alertness is dimished. It feels like during the day, I am fighting dozing off or spacing out completely. Head is very sensitive to stress. Ears feel full and bothersome, and my tinnitus bothers me. I don't know why nights are better (still not normal, though.) The cognitive stuff bothers me the most; it is maddening.


    There are these other symptoms:

    - bowel problems (stomach gas, bloating, frequent bowel movements and then constipation)

    - physical fatigue, but the mental fatigue is worse

    - frequent urination (I do not have an infection)

    - some hyperventilation and out of breath feelings

    - some chest pain and heart palpitations

    - restless legs, especially at night. They often bother me when I try to sleep.

    - sore and weaker leg muscles

    - sensitive muscles, but I do not have the frequent pains that many fibro people mention


    - high anxiety, irritible, emotionally unstable, have to relax my mind completely to get anything done. Otherwise my cognitive symptoms flare up to an unbearable degree. Also depression, but that seems forced on me.

  2. mezombie

    mezombie Member

    Hi Matthew, and welcome to the board!

    Your symptoms do sound like ME/CFS, but remember, the body can express illness in only so many ways. So the first step to take is to have a good doctor consider other diseases that could be at the root of your problems. Look at it this way: You really don't want to have CFS! It's possible that you have a curable disease or at least something that is more treatable.

    If your doctor can't come up with anything other than sleep apnea, and the CPAP isn't helping with your symptoms, then you may very well have ME/CFS.

    Here is a summary of ME/CFS paraphrased from Dr. Kenny van DeMeirleir's book Chronic Fatigue Syndrome: A Biological Approach, February 2002, CRC Press, pg. 275.:

    1. POST-EXERTIONAL MALAISE AND FATIGUE: There is a loss of physical and mental stamina, rapid muscular and cognitive fatiguability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen. A pathologically slow recovery period (it takes more than 24 hours to recover). Symptoms exacerbated by stress of any kind. Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

    2. SLEEP DISORDER: Unrefreshing sleep or poor sleep quality; rhythm disturbance.

    3. PAIN: Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness. Pain can be experienced in the muscles, joints, or neck and is sometimes migratory in nature. Often, there are significant headaches of new type, pattern, or severity.

    4. NEUROLOGICAL/COGNITIVE MANIFESTATIONS: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia. There may be overload phenomena: informational, cognitive, and sensory overload -- e.g., photophobia and hypersensitivity to noise -- and/or emotional overload which may lead to relapses and/or anxiety.


    AUTONOMIC MANIFESTATIONS: Orthostatic Intolerance: e.g., neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities.

    NEUROENDOCRINE MANIFESTATIONS: loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability.

    IMMUNE MANIFESTATIONS: tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals.

    6. The illness persists for at least 6 months. It usually has an acute onset, but onset also may be gradual. Preliminary diagnosis may be possible earlier. The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations may fluctuate and change over time. Symptoms exacerbate with exertion or stress.


    There are also a number of tests that can confirm a diagnosis of ME/CFS.

    Tests for Abnormalities in ME/CFS.

    While there is not one definite test for ME/CFS, many tests may indicate abnormalities. The standard battery of tests may be inadequate to reveal abnormalities in ME/CFS patients. Many of the following tests are not available in general medical laboratoris but may be available in reseach facilities or more generally available in the future.

    Virology, etc: viral antibodies, including Coxsackie B and HHV-6; bacteria, mycoplasma, etc.

    37kDa 2-5A Rnase-L Immunoassay: protein, activity, PKR cleavage & elastase activity assays.

    Other immunological markers: NK [Natural Killer] cell levels and function per cell for low NK cell cytotoxicity; CD4-CD8 ratio; ANA; activated immune complexes - IgG sub-fractions including IgG1 and IgG3, circulating immune complexes IL2 and IL4; Th1-Th2 response to nitrogen stimulation (high levels of Th2 idicate autommunity), flow cytometry for activated/elevated lymphocytes; antilamin antibodies may autommunity and brain cell damage (lamin B antibodies are evidence of autoimmunity); humoral autoimmunity for polypeptides of the nuclear envelope (NE); antibodies in neuronel cells MAP2 (kinase regulators)

    Urinary markers: 24-hour urine free cortisol; elevated amino-hydroxy-N-methyl-pyrolidine corelate with quantity of symptoms; IAG-tryptopan metabolite, is usually positive and indicates a leaky gut, which in turn is indicative of a leaky blood brain barrier; urinary creatine and other muscle metabolites.

    Endocrine testing: CT scans may show reduced adrenal gland size; thyroid hormone levels with attention to bioavailability of T3 & those with reduced level should be checked for selenium as it regulates conersion of T4 to T3; reduced HPA function.

    Increased 5HT neurotransmission

    Chronic Orthostatic Intolerance: Use tilt-table test or monitor the pulse and blood pressure while standing. Note: This monitoring must be done with caution and someone standing beside the patient.

    Cardiac dysfunction: 24-hour Holtar monitoring - specifically ask to either view the results yourself or to report repetitive oscillating T-wave inversion and T-wave flats. This pattern is typical of many ME/CFS patients but may not be reported.

    Cardiopulmonary Exercise Testing: AMA Guide for Evaluation of Permanent Impairment. Lower cardiovascular and ventilatory values at peak exercise help determine functional capacity, and peak oxygen consumption levels determine disability categories. See caution in chart on page 4 [of the Consensus Document].

    Computer Science and Application (CSA): Actigraph is a small device that measures frequency and intensity of activity in one minute intervals for up to 22 days. Typically, less intense and shorter activity peaks followed by longer rest periods are identified. It is helpful to have the patient keep a daily diary of activities during this period and/or wear a speedometer.

    CNS, ANS: Romberg test; nystagmus test (may fluctuate from positive and negative throughout the day); altered sympathetic modulations; subnormal and/or fluctuating diurnal body temperature.

    Cognitive performance: decreased processing speed, working memory, information learning, etc.

    SPECT scans may reveal significantly lower cortical/cerebellar regional cerebral blood flow frequently in the frontal, parietal, temporal, occipital, brain stem and throughout the cerebral cortex.

    PET scans may reveal decreased glucose metabolism in the right mediofrontal cortex, and significant hypoperfusion and hypometabolism in the brain stem.

    MRI brain scans: Elevated numbers of punctuate lesions, particularly in the frontal lobes and subcortical areas, suggest demyelination or edema. Do spinal MRI for disc herneation and minor stenosis.

    qEEG brain topograpy: Elevated EEG activity in theta and beta frequencies and increased intracerebral electrical sources in left frontal region delta and beta frequencies in eyes closed condition may be identified. Reduced sources in right hemisphere (beta) may be noted during verbal cognitive processing.

    Hypercoagulability: flow cytrometry - fibrinogen, thrombin/anti-thrombin complexes, etc.

    Positive tests for fibromyalgia syndrome and myofascial pain syndrome should be noted.

    Skin conductivity and skin temperature: The combination of a lower ability of the skin to conduct electrical current in response to visual and auditory stimuli, and a higher skin temperature of fingers indicate a down-regulation of autonomic sympathetic tone.

    Sleep studies may idicate that there is insufficient time spent in the deeper stages of sleep, and alpha wave intrusion into delta waves within non-REM sleep

    Ocular test: slowed and marked jerkiness of saccades; difficulty with and slowed changing of visual fixation, constricted peripheral fields; low and/or incomplete blinking; small pupils; light hypersensitivity, tear film abnormalities such as low tear break-up time, inadequate productrion of the oil or mucous layer in tears, rose Bengal corneal staining; visual midline shift.

    Allergies or sensitivities; Lung function testing; Liver function: CPK and liver function.

    -----------------------------------------------------------Source: P. 18, Carruthers and van de Sande, "Overview of Canadian Consensus Document": [page 24 of the Adobe website], accessed 14 April 2008 on the website of the ME/FM Action Network of Canada.
    The Overview is often updated. The most recent version will always be available if you first click here:
    and then scroll down to the link to the ME/CFS Overview. That page also has links to translations into French, Spanish, German, and Italian, and links to the Canadian Consensus FMS [Fibromyalgia] Overview.

    [This Message was Edited on 05/02/2008]
  3. matthew76

    matthew76 New Member

    Thanks for the welcome!

    Yes, my doctor says I have been checked from head to toe, and that I'm fine. But I sure don't feel fine. Just the way I wake up is a nightmare. There are times, especially early in the day, I have trouble following conversation. Right after waking up, even the radio is too much. I'm not sure what else I could have besides CFS. I was worried about a stroke, but again, the CAT scan was normal. Blood tests just showed slightly high liver function. And I have no loss of movement or speech. I read somewhere that CFS symptoms can be a bit stroke-like. I could have an inner-ear thing I guess, but would it really cause all these symptoms? The ENT didn't find anything on the regular check up.

    If it is CFS, do you have tips for coping? I hate feeling like I could easily just lie down all day.
    [This Message was Edited on 05/02/2008]
  4. Rafiki

    Rafiki New Member

    Many infections of the bowel and small bowel have been implicated in chronic fatiguing illnesses. Given your onset, I would think that some serious investigation is in order.

    Maybe do some research online yourself. There must be something here (try the search function) and Google should be a productive avenue of inquiry.

    You may be one of the lucky ones who is able to find the offending agent and get rid of it! Would be good, huh? Yeah!

    Good luck,
  5. matthew76

    matthew76 New Member

    My doctor thinks the changed bowel movements and stomach discomfort are anxiety, but I think maybe things should be looked at. Could bowel troubles/infections lead to all my cognitive stuff?
  6. Rafiki

    Rafiki New Member


    There are so many different suspects in the gut as trigger camp that I won't post any links here. Many conditions that present with gut problems include or lead to neurological issues.

    You could have an infection or a gluten issue (intolerance or celiac) which is effecting cognition and neurological functioning -- the gut is complex and a big factor in the immune system...

    and the immune system's connected to the thigh bone, Oh hear the name of the Lord! Uhm, I don't mean to be irreverent, that old song just popped into my head.

    It's worth looking into. I'd Google if I were you.

    Best of luck,
  7. richvank

    richvank New Member

    Hi, Matthew.

    Based on what you've reported, I think it is very possible that you have CFS. I am a CFS researcher. I have proposed a hypothesis for the causes and pathogenesis of CFS, called the Glutathione Depletion--Methylation Cycle Block hypothesis. I have also suggested a simplified treatment approach based on this hypothesis. My papers are posted on this board, or you can access them from Cort Johnson's website via the urls in my bio.

    If you look at my pathogenesis paper from January 2007 and you find that the things described there seem to apply to your case, I would suggest that you ask your physician to order the methylation panel from Vitamin Diagnostics, Inc. I understand that it costs $300. It will tell you if you have glutathione depletion and a methylation cycle block, and if you do, I would suggest that, together with your physician, you consider the "simplified treatment approach" that I have described on this board. The most recent update on it is dated July 18, 2007.

    The contact information for Vitamin Diagnostics is as follows:

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

    This treatment is currently bringing improvement to about two-thirds of the CFS patients who are trying it. If you search on "methylation" on this board, you will find posts from quite a few people who are trying this treatment.

  8. matthew76

    matthew76 New Member

    Everyone has been very helpful. It's amazing how my doctor just stopped with the apnea and anxiety explanations. I slept better last night, but still woke up the same. Anytime I attempt to sleep, I usually wake up feeling worse.

    It's something how as soon as night comes, I feel a little better, mentally sharper, and less like part of me is zoned out. Is that common with CFS?
  9. mezombie

    mezombie Member

    Hi again, Matthew76,

    Right under the ProHealth logo at the top of the page, you'll find several tabs.

    To get a better sense of what you may be dealing with, click on the "Library" tab. In the left hand margin of the library page, you'll find more information about ME/CFS. You can do a search of the library.

    Right below the purple tabs, you'll find the search function for this message board. That can come in handy, too.

    The purple tabs are also worth clicking. Along with the Coping Corner, you may want to see if there are any local support groups near you by clicking on the Support Group tab.

    A good general support site I found helpful is There are a lot of helpful personal stories and articles there. I took Bruce Campbell's course, and would definitely recommend it.

    I know you must be feeling overwhelmed and confused right now. We are here not only for information but for support, too.

    Feel free to start a new thread asking how people cope with something specific that is bothering you. You're bound to get responses. Just remember not to be to general in your question.

    Hang in there, OK?

    P.S. We must have been posting at the same time. It's not unusual for people with ME/CFS to have a time of day when they feel better and and a time of day when they feel worse. Some people feel better in the morning, others in the evening. Like you, I feel lousy when I wake up, and my best time is late evening. You're not alone!
    [This Message was Edited on 05/02/2008]
  10. Trevor1

    Trevor1 New Member

    I have a running 3 year diagnosis of CFS and your symptoms mimic mine perfectly, however many diseases also mimic CFS. So, you pretty much have to start the ruling out game. Rule out everything related until you end up at CFS. Although based on what your saying it sounds a lot like you do have CFS.

    Your symptoms of feeling more awake at night and dead in the morning is the exact same for me, I have yet to find away around this one. And how you described the fog is exactly how mine is, it feels like im a robot, with a head full of cotton 24/7.

    The one thing that helped me with sleep early on, which I still take is Klonopin. Many people on the board take Klonopin, it is an anti seizure medication, but basically it is an anti anxiety. In the same family as Xanax, Valium etc...Anyway, if your anxiety gets to bad id suggest talking to your doctor about Klonopin for sleep. Its the one thing that helped me out in the beginning.

    Id also start looking at taking probiotics for your gut, along with some B12 for energy. And like everyone else has said try and find a good doctor to help you out, that can be tough. Read through the many posts on this board and you will find tons of information that can be helpful.

    As far as coping goes, im still having trouble with that. I think most everyone is...this is quite a debilitating illness and I try and live by the thought of "never surrender" some days are better than others. Try not to get down on yourself, its not your fault your sick. Its hard for other people to understand and that part is tough to accept but try to pace yourself.

    take care,
    - Trevor
  11. matthew76

    matthew76 New Member

    Since my biggest problems are cognitive, I'll search there first. I hate being like part of me is zoned out all day and that I'm so desperate to focus. When I do, I don't focus for long. Watching sports at night is good and relaxing, as it doesn't hurt my mind. I find even going to stores to be a problem. Do you feel this kind of frustration? My head just drives me nuts.
  12. matthew76

    matthew76 New Member

    A positive attitude is essential, but it's hard to keep that attitude everyday. I bet you know how hard it is to enjoy life. I try to look at every little good thing that is happening that day, since I pretty much have to go day by day. Good luck to you, too!
  13. Rafiki

    Rafiki New Member

    you'd get me!

    What you describe is very common around here.

    I did a search here in the library for... uh, uhm, can't remember the terms I searched!!! See? Anyway, common words you might search for intestinal infection and cfs/cfids/ME did not yield what I thought they would but who knows what I actually searched for. (Again, see, you're so not alone here!)

    Anyway, a google search for: intestinal infection cfs
    yielded lots of info.

    Where am I?
  14. hopeful4

    hopeful4 New Member

    I'm sorry for what you are going through and how scary it is right now for you. Not having answers when it involves our health, well-being, and very lives is just plain difficult and frustrating.

    Please consider lyme disease as a possible underlying infection. Originally, I, and many others here, were first diagnosed with CFS/FM. Many of the symptoms of CFS/FM overlap with lyme disease. It took 5 long years to finally get the lyme diagnosis. In addition, many of us have other underlying infections and imbalances, such as mycoplasma and candida, and hormonal imbalances. Also, impaired immune function.

    When I read your symptoms, they could be lyme. My husband has lyme and has many of the same symptoms you have. He has severe obstructive sleep apnea which just makes everything so hard for him., not to mention all the rest of the symptoms.

    Just to be sure and at least rule it out, I suggest that you find a doctor very knowledgeable about lyme, called a lyme literate medical doctor (LLMD). Ironically, in most cases, this is NOT an infectious disease doctor. I suggest that you contact a lyme support group in your area to find an LLMD, or go to, click on flash discussion, then seeking doctor.

    Lyme is a clinical diagnosis, based on patient history, symptoms, and labs are considered. It is in your best interest to read up on it.

    Well wishes to you. I hope you get the answers you need soon.

    Lyme Symptoms List

    This is an article from the Canadian Lyme Disease Foundation:

    Lyme (commonly misspelled as Lime or Lymes) Disease symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite.

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscrete areas go undetected). Treatment in this early stage is critical.

    If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

    With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.

    Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. see -- Other Presentations and Misdiagnoses

    If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

    If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

    The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

    No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

    Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup)

    Symptoms of Lyme Disease

    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular and spreading out (or generalized)
    Raised rash, disappearing and recurring

    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in Head, White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


    Double or blurry vision
    Increased floating spots
    Pain in eyes, or swelling around eyes
    Oversensitivity to light
    Flashing lights/Peripheral waves/phantom images in corner of eyes


    Decreased hearing in one or both ears, plugged ears
    Buzzing in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears

    Digestive and Excretory Systems

    Irritable bladder (trouble starting, stopping) or Interstitial cystitis
    Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

    Musculoskeletal System

    Bone pain, joint pain or swelling, carpal tunnel syndrome
    Stiffness of joints, back, neck, tennis elbow
    Muscle pain or cramps, (Fibromyalgia)

    Respiratory and Circulatory Systems

    Shortness of breath, can't get full/satisfying breath, cough
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Heart palpitations or extra beats
    Endocarditis, Heart blockage

    Neurologic System

    Tremors or unexplained shaking
    Burning or stabbing sensations in the body
    Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
    Pressure in the head
    Numbness in body, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Increased motion sickness
    Lightheadedness, wooziness

    Psychological well-being

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    Panic attacks, anxiety

    Mental Capability

    Memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration or reading
    Going to the wrong place
    Speech difficulty (slurred or slow)
    Stammering speech
    Forgetting how to perform simple tasks

    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstrual pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain

    General Well-being

    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    Symptoms seem to change, come and go
    Pain migrates (moves) to different body parts
    Early on, experienced a "flu-like" illness, after which you
    have not since felt well.
    Low body temperature

    Allergies/Chemical sensitivities

    Increased affect from alcohol and possible worse hangover

  15. matthew76

    matthew76 New Member

    my doctor tested me for Lyme, amd it came out negative. But mycoplasma infections were going around here last fall, and that has been known to cause CFS. It is possible this all started with mycoplasma.
  16. matthew76

    matthew76 New Member

    I did have a rash and some blurry vision in the morning before this all started. Should I get tested for Lyme again?
  17. woofmom

    woofmom New Member

    Read what Rich Van Konynenburg, Martin Pall, Grace Ziem and a number of other researches have to say. I had severe CFS in the early 90s and developed Multiple Chemical Sensitivities a few years ago. My illness was TRIGGERED by NutriSweet, fragrances and formaldehyde. Lyme, mold, chemicals, vaccines, poor digestion, mental stress, etc are only part of the problem. When the body can no longer deal with these things, it starts to break down. This results in oxidative stress. This has a domino effect on the body. It's taken two years, but, thanks to these researchers (especially Rich) I'm 90% better. The symptoms of Lyme are also symptoms of other metabolic conditions.
    [This Message was Edited on 05/02/2008]
  18. deliarose

    deliarose New Member

    A lot of us experience this phase-shifted patterns where we're more productive in the evening. It's related to adrenal fatigue/problems.

    You can search under phase-shifted patterns.. or whatever for more info.

    I'm doing Rich's protocol. It's been very helpful for me and might be even more helpful for someone who hasn't been ill long.

    The Vitamin Diagnostics panel is definitely a good starting point.

  19. Nimzovich76

    Nimzovich76 New Member

    I started having stomach issues, bloating, fatigue, I would vomit after exercising, also I had issues with mood changes and mental fatigue, but just like you I was still functional. My Dr. noticed an abnormal neutrophil count on my blood work and that I was positive for H. Pyloris.

    I was treated for two weeks with antibiotics for it, and two days after finishing them I had extreme neurological disturbance, severe neuropathies to the point I felt one of my feet was broken, severe congnitive impairment and change of mood, I developed central sleep apnea as well, I was bed bound and house bound for very long, I went on to recover to about 90% after about 6 months of different therapies. Now, I have relapsed again because I over did it. You have to rest, if you do take antibiotics be careful of taking probiotics as well.

    My worst symptom is the congitive issues together as well with the weak and painful upper legs, specially in the morning. I also have numbness and tingling, muscle twitching etc.

    Don't be afraid of getting on antidepressants temporarily until your condition improves, it will greatly help with your sleep and mood.

    hope you do well

  20. VistaDeNada

    VistaDeNada Guest

    Hi, Matthew. I know exactly what you mean about the feeling of lack of oxygen to your brain. And my ears are always crackling -- just a little -- when I swallow and it drives me up a wall. I've dried out with sudafed but it just returns. Like I say, it's subtle, sometimes bothers me more or less, but it's always there. And then around noon my head feels like it is full of congestion or my brain is under water -- like a baby floating in amniotic fluid, ricocheting off the sides of my skull as I move my head. If I wasn't medicated, I'd sleep all day and sometimes still do on weekends anyway. I am a female, and I have a diagnosis of non-cataplexy narcolepsy. I’m also blessed with Fibro and CFS.

    Since you have CPAP, you qualify for provigil. It also sounds like you have EDS whether it stands alone or is a symptom of a larger syndrome, like CFS. Has your doctor mentioned Provigil for your Excessive Daytime Sleepiness?

    It really helps me. I'm super-sensitive to stimulants and so regular ADHD-type meds were too agitating. I tolerate Provigil much better, no shakes, jitters or teeth grinding,..and I’m someone who doesn’t even handle caffeine very well.

    Provigil helps me with my 9-hour day at work. Too bad I have to work and take something to prop me up, but since "it is the way it is" provigil is worth the cost. I also have a weird stress response. Most people get the Fight or Flight reflex, I fall asleep and play dead. So if I get too stressed out, no matter how alert I am or what I’m taking, I have about two minutes to pull over or lay down somewhere because I have a ‘sleep attack.’

    To sleep at night, which is unnatural because that is when I am the most awake, Ambien CR helps me better than anything else I've been given (all trial and error). In my sleep study there was some apnea, but the problem was that I didn't fall into the deep restorative sleep until 6 or 7 hours into my process, just about the time to get up! Maybe a messed up circadian rhythm thing, but nonetheless, it had to be improved. The Ambien helps me fall asleep and then the CR-part (longer acting) keeps me in the deep restorative sleep for longer. Yipee!

    Those take care of my defective sleep/wake cycle so I can be a semi-productive member of society. Lyrica was added to keep the pain away so I don't feel like I have the flu all the time. And it goes all night so I wake up less from body aches, numbness, and restless legs. The only thing I hate is that I'm getting the weight-gain side effect of Lyrica. Oh well, I can’t win em all! I’m just happy to be gainfully employed with medical insurance and to be able to afford all my medications.

    The dreams you have as you are waking up, are you able to move your body, or do you experience sleep paralysis?

    Sorry to run on and on! I just hope you can figure out what is causing your symptoms and either get rid of them, or at least manage them sufficiently, which is my goal.

    Take care!
    Vista De Nada

    P.S. If you want to talk about the depression, you are welcome to send me a private email and I will give you my email address.

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