Ccould it be something besides FMS

Discussion in 'Fibromyalgia Main Forum' started by reckabek, Jun 30, 2006.

  1. reckabek

    reckabek New Member

    could all this be something else, I mean 5 yrs of back shoulder and neck pain, vertigo and mental aliments...but all of a sudden BAM...a different issue, Muscle pain, all over, i lost all muscle...everytime i use em, im in pain. sitting up hurts, standing hurts, laying down feels better, but i just wait to not be able to use my limbs....could it be something different then FIBRO??? muscular dystophy??? am i getting a little parinoid now....why has it changed??? maybe i should see the dr. again for the millionith time this month...hmmm...........
  2. adirondackhoney

    adirondackhoney New Member

    chances are it's FMS, theres an article about 101 symptoms someplace here,I think.(title might be wrong)
    It's not limited to clinically described symptoms.
    My list is endless.
    most of us worry that it's more,
    sometimes we even think we might be dying.
    It's VERY frustrating, cruel and mean.
    and severely misunderstood.
    Cindy Lou
  3. lovethesun

    lovethesun New Member

    That Is how I feel.Linda
  4. reckabek

    reckabek New Member

    im in process, i have the MYSTERY HISTORY... so cause there is a whole new issue at hand, it scares me....this is something totally different,

    do peeps w/ FMS get worse w/ yrs??? new things add in the factor??
  5. reckabek

    reckabek New Member

    I am seeing a dr. as u can tell by recent posts he wont give me anything yet but neurontin for this pain....its like 2 months ago i started loosing muscle, and last month i felt it...ive never been a big fitness buff, but i was always able to do things, and now all of a sudden, lifting 3 lbs weight is so sad...swimming hurts, used to be able to carry in 7 bags of grocerys now 2 hurts....used to be able to work out for 1+ hrs no problem(when i did) now 15 mins feels like a 5 hr hard core work out....its just something NEW, its scarey...
  6. hopeful4

    hopeful4 New Member

    Many of us with CFIDS/FM found out we have Lyme Disease. I will post you some info to consider for yourself.

    Lyme Disease and Its Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue


    By Kent Holtorf, MD
    (Reprinted with author's permission)

    Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are most often transmitted by tics and mosquitoes. The spirochetes have been called "the great imitators" because they can mimic virtually any disease, which often leads to misdiagnosis. Patients suffering with a chronic illness and especially those with Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue should consider Lyme disease as a contributor.

    Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as 'brain fog'. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer's disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.

    Patients with chronic Lyme disease often complain of 'strange' or 'weird' symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment.

    Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease.

    The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).

    If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%.

    There are also a number of co-infections that are commonly transmitted along with the Lyme bacterium, which include Bartonella, Babesia, Ehrlichia and others. There are different species in different parts of the country that can make testing difficult and insensitive. As with Borrelia, there is a very high percentage of false-negative results (test negative despite infection being present).

    Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst.

    Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease.

    Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy.

    A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment. This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).

    To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients.

  7. hopeful4

    hopeful4 New Member

    Lyme Info and Symptoms reposted

    Below 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 menstral 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
  8. reckabek

    reckabek New Member

    well im 29.....ive had pain since 24?? that i have seen DR for. but always in the same spot. i have a rheumy apt. aug 3, i dont know maybe i will go to DR...AGAIN for the 3rd time in 3 weeks.....and this time have him run work. my blood came back fine, a little high cholesterol, but no worries. If i take it easy i seem to loose the all over body aches and pains, but it stays in the back, shoulders and neck...but as soon as i feel i can do "normal things, i go down hill..and then my back isnt as painful..wierd!!! so maybe tomorrow i will try to work out of some sort and see if maybe i still have no muscle...its so wierd...
  9. reckabek

    reckabek New Member

    Lyme is dont recall being not in the bushes much hehe...i actually live in a semi city...uggg...dunno...
  10. minimonkey

    minimonkey New Member

    I have Lyme, too -- after a diagnosis of FMS (and 18 years of chronic pain, illness, neuro weirdness, etc!) Many folks who have Lyme don't recall a tick bite -- the ticks can be very tiny, almost invisible, and there isn't always a rash. It is important to have the test run through a sensitive lab such as IgeneX in California.

    Lyme *is* scary, but it is also treatable. I am getting worlds better with proper treatment.
  11. reckabek

    reckabek New Member

    But my joints do not hurt at all.....just muscle weakness and when used muscle pain...and back pain all the time. well then again my knees dont always work well....but there is no joint issues, isnt that a major sign???? well thanks ill talk to dr. about it!!! beck
  12. hopeful4

    hopeful4 New Member

    Everyone exhibits a different set of symptoms. Mine have mainly been cognitive, thinking, brain-stuff, and fatigue. I have little pain, mostly in the cold, wet weather. I do have muscle weakness, TMJ, vision problems.

    Please consider ruling out Lyme Disease and co-infections. Not just any old doctor can do this. Diagnosis is clinical, based on symptoms, history, and labs. A negative lab does not rule out Lyme. That is why it's very important to find a LLMD in your area (Lyme Literate Medical Doctor), and be tested by Igenex.

    You can go to lymenet dot org, click on Flash Discussion, click on Seeking a Doctor.

    Wishing you the best,