? our children having this DD.

Discussion in 'Fibromyalgia Main Forum' started by jenn_c, Sep 21, 2008.

  1. jenn_c

    jenn_c New Member

    My son 9 yrs old, has frequent back spasms and pain. I try not to talk about my pain and where it is. Hubby and both kids know I am in pain by the look on my face. So anyways, there has been several times where my son will have pain in different areas. Usually it is where my trigger point of pain is that day. He is very sensative (personality wise). His head is sensative, when I wash his hair or brush it,as easyas I can he will complain that it hurts. He also has ADHD, and had an unknow virus at the age of 2. Noone knows what it was. The virus attacked his neurological system.The only residual effect he has left is right hand tremors. He had 2 brain MRI's. It showed that certain areas o his brain lights up brighter than others. I am going to start a post about this. Thanks for listening. Any thoughts or comments??

  2. hopeful4

    hopeful4 New Member

    I have read on other threads about people with CFS/FM who have children also with CFS/FM.

    In my instance, I was diagnosed in 2000 with CFS/FM after a period of sudden illness, and gall bladder surgery from which time the CFS/FM symptoms appeared.

    Fast forward to late 2005, when after umpteen doctors and no lasting success with treatment, I was ultimately diagnosed with Chronic Lyme Disease, which was the underlying cause of the CFS/FM (along with other chronic infections and imbalances.)

    Now for my husband's story. He was in a car accident, and began to exhibit symptoms of CFS/FM, with which he was also diagnosed. Once again, fast forward to early 2006, when, he was also diagnosed with Chronic Lyme Disease and other underlying infections and imbalances.

    So, both my husband and I were first diagnosed with CFS/FM. So what could cause both of us to be similarly sick? It would have to be something we were both exposed to, or in contact with; something in our environment and/or something about our lifestyle.

    I'm finding through my contact with other people with lyme disease, that other couples and entire families have chronic lyme disease. Something to consider for anyone with CFS and/or FM.

    So, although I don't know the specifics of your symptoms nor your son's, I would say that lyme disease is something to consider and investigate. It can be passed from mother to child in utero or through breast feeding. Or, the child could have been exposed to the borrelia burgdorferi bacteria which causes lyme disease.

    I'll post you a symptom list which may help.

    Well wishes,

    [This Message was Edited on 09/22/2008]
  3. hopeful4

    hopeful4 New Member

    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

    LISALOO New Member

    My mom and my sister had such awful growing pains, I remember my sister crying all the time.

    I have CFS & FM, my sister runs triathalons and my mom is the most active woman.

    Hopefully your son will grow out of this.
  5. jenn_c

    jenn_c New Member

    Definatly some food for thought. I still bhave to print out the lyme symptoms, but when I read it, there were quite a few yes's. May I ask, what is the difference between a lab test and a clinicle test?
  6. hopeful4

    hopeful4 New Member

    Glad you asked about the testing, I think you mean for the lyme disease. The lab testing alone is not diagnostic for lyme...that just means that many of the most commonly used tests for lyme are not reliable, so, generally speaking, someone may have lyme, but the test does not pick up on that.

    The first test that is usually given is called ELISA, and it is very unreliable. A test that is considered more reliable is through IGENEX labs and called Western Blot. There are also other tests that some doctors prefer.

    A clinical diagnosis for lyme disease means that a doctor who is very knowledgeable about lyme (and most doctors are just not very aware of it, especially the chronic lyme disease) can make a diagnosis based on many factors, such as the patient's symptoms, history, possible exposure, and various lab tests.

    Hope this helps.
  7. erinwilburn

    erinwilburn New Member

    I was at a confrence with her and she said the new findings are that blood relatives of those dx are 8.5 times more likely to be dx. They are finding that there are 88 genes which are diffrent in people with this DD. it is absolutley important to recognize sympotoms in our families and it seems like you are a great mom and doing so much for your son!
  8. Doober

    Doober New Member

    something I constantly think about.

    One of my kids complains of pains in a few areas of their body. We did see a DR about one of them and there was a legitimate reason for it. But the others are still questionable.

    This scares me that our children could be dealing with these things so ealry in their lives and until they become adults this is most always going to be chalked up as being growing pains.

    This was how it was when we were kids. This is just the cycle that will never change with our lives and that is the part that scares me.

    No matter how much we question the DRs as parents , the answer are almost always are going to be the same regardless of what we tell the DRs about what we are going through.

    The possitive thing is to remember we know what it feels like and we know how much we are ignored and doubted by the medical field, that we are more compassionate towards our kids when these things come up.

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