Hi I am NEW and i NEED some serious help! :(

Discussion in 'Fibromyalgia Main Forum' started by cathymdl, Jan 3, 2006.

  1. cathymdl

    cathymdl New Member

    Hi, I am new to this site. I am a 33 year old woman with 4 kids. This is kinda a long story but i need to start from the beginning for any of it to make sense and even then it doesn't. About 10 years ago i had my 3rd child. Right afterwards i got sick and was told i have mono or the ebv virus. So i was tired and sick for a while then out of the blue i started getting a pain in my cheek on my left side. My jaw does click as well. About 2 months after that i got asthma and allergies. They prescribed me tons of medicines because my asthma is bad. When i went to see a specialist about the asthma they said it doesnt register as asthma that something else is causing my asthma. I have been to the ent to dentist the headache and pain center for missouri. I have been hospitalized 3 time with a low white blood count and chills and fevers. Once was told my spleen was enlarged. Also i would have pains on my right side with the chills. They would put me on antibiotics threw an iv. But never had an answer. They did run tests bt nothing has shown up. I went and saw an infectious disease doctor who thought i might have lyme disease. I was tested for hiv 2 times. Everything ends up negative. I was told i have tmj or facial neurolgia. Now after 10 years i have bladder problems , stomache problems too! I have been on so many steriods over the years i feel maybe that has caused my stomache cramps. I have also had cancerous cells in my cervix. Thats has to be cut out. My main problems is that my face pain is so bad that i get very numb on my face and down my shoulders and in my fingers and part of my legs as well. This is all on my left side only.I feel fatigued and drained. I am so sad all the time and i feel bad for my husband and children. I used to be so happy. I dont know where to turn. I have no insurance anymore and i cant afford any because i cant seem to keep a job because i am always sick. Also my daughter recently got mono. She has been out of school for a month but is going back tomorrow. I just thought i would mention that. Please someone give me some kind of advice. I just want to happy again. I realize this is jumbled. I am very upset right now. I got this book from the library called Chronic Fatigue Syndrome the hidden epidemic by Jessie A. Stoff. This is what prmpted me to find this website. I feel tired and i have trouble sleeping. I feel like my whole body is asleep. My eyes are blurry. Please someone any advice would help. Thanks Cat
  2. cathymdl

    cathymdl New Member

    Thanks for all your help. :) I will be doing alot of searching on here. :)
  3. JLH

    JLH New Member

    Welcome to our family. Maybe with the bits and pieces that everyone contributes, you might find something to help you.

    Another thing I might mention .... when you have a long paragraph ... it's easier to read if you break it up often with spaces ... and make many small paragraphs.

    Some of your face pain might be due to Sjogren's Syndrome.
    I have that and I know it affects my jaws, including TMJ, but also my Parodid Glands, which fall under your ears.

    Here is some info on it ... but you can also do a google search for it and read lots more about it.

    Part 1 of 10 - What is Sjogren's Syndrome?

    Sjogren's syndrome is an autoimmune disease, that is, a disease in which the immune system turns against the body's own cells. In Sjogren's syndrome, the immune system targets moisture-producing glands and causes dryness in the mouth and eyes. Other parts of the body can be affected as well, resulting in a wide range of possible symptoms.

    Normally, the immune system works to protect us from disease by destroying harmful invading organisms like viruses and bacteria. In the case of Sjogren's syndrome, disease-fighting cells attack the glands that produce tears and saliva. Damage to these glands keeps them from working properly and causes dry eyes and dry mouth. In technical terms, dry eyes are called keratoconjunctivitis sicca, or KCS, and dry mouth is called xerostomia. Your doctor may use these terms when talking to you about Sjogren's syndrome.

    The disease can affect other glands too, such as those in the stomach, pancreas, and intestines, and can cause dryness in other places that need moisture, such as the nose, throat, airways, and skin.

    Sjogren's syndrome is one of over 100 rheumatic diseases. A rheumatic disease causes inflammation in joints, muscles, skin, or other body tissue, and Sjogren's syndrome can do that. Sjogren's syndrome is also considered a disorder of connective tissue, which is the framework of the body that supports organs and tissues (joints, muscles, and skin).

    Sjogren's syndrome is classified as either a primary or secondary disease.


    I only printed part 1 of 10.

    I will also give you more Symptoms Lists of fibro and cfs, under separate replies .. for easier reading .. just FYI so you know what all can go along with these problems.

    Hope of this info is helpful.

  4. JLH

    JLH New Member

    Fibro Symptoms List

    ____ Fatigue, made worse by physical exertion or stress
    ____ Activity level decreased to less than 50% of pre-illness activity level
    ____ Recurrent flu-like illness
    ____ Sore throat
    ____ Hoarseness
    ____ Tender or swollen lymph nodes (glands), especially in neck and underarms
    ____ Shortness of breath (air hunger) with little or no exertion
    ____ Frequent sighing
    ____ Tremor or trembling
    ____ Severe nasal allergies (new allergies or worsening of previous allergies)
    ____ Cough
    ____ Night sweats
    ____ Low-grade fevers
    ____ Feeling cold often
    ____ Feeling hot often
    ____ Cold extremities (hands and feet)
    ____ Low body temperature (below 97.6)
    ____ Low blood pressure (below 110/70)
    ____ Heart palpitations
    ____ Dryness of eyes and/or mouth
    ____ Increased thirst
    ____ Symptoms worsened by temperature changes
    ____ Symptoms worsened by air travel
    ____ Symptoms worsened by stress

    ____ Headache
    ____ Tender points or trigger points
    ____ Muscle pain
    ____ Muscle twitching
    ____ Muscle weakness
    ____ Paralysis or severe weakness of an arm or leg
    ____ Joint pain
    ____ TMJ syndrome
    ____ Chest pain

    ____ Lightheadedness; feeling "spaced out"
    ____ Inability to think clearly ("brain fog")
    ____ Seizures
    ____ Seizure-like episodes
    ____ Syncope (fainting) or blackouts
    ____ Sensation that you might faint
    ____ Vertigo or dizziness
    ____ Numbness or tingling sensations
    ____ Tinnitus (ringing in one or both ears)
    ____ Photophobia (sensitivity to light)
    ____ Noise intolerance

    ____ Feeling spatially disoriented
    ____ Dysequilibrium (balance difficulty)
    ____ Staggering gait (clumsy walking; bumping into things)
    ____ Dropping things frequently
    ____ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
    ____ "Not quite seeing" what you are looking at

    ____ Hypersomnia (excessive sleeping)
    ____ Sleep disturbance: unrefreshing or non-restorative sleep
    ____ Sleep disturbance: difficulty falling asleep
    ____ Sleep disturbance: difficulty staying asleep (frequent awakenings)
    ____ Sleep disturbance: vivid or disturbing dreams or nightmares
    ____ Altered sleep/wake schedule (alertness/energy best late at night)

    ____ Depressed mood
    ____ Suicidal thoughts
    ____ Suicide attempts
    ____ Feeling worthless
    ____ Frequent crying
    ____ Feeling helpless and/or hopeless
    ____ Inability to enjoy previously enjoyed activities
    ____ Increased appetite
    ____ Decreased appetite
    ____ Anxiety or fear when there is no obvious cause
    ____ Panic attacks
    ____ Irritability; overreaction
    ____ Rage attacks: anger outbursts with little or no cause
    ____ Abrupt, unpredictable mood swings
    ____ Phobias (irrational fears)
    ____ Personality changes

    ____ Eye pain
    ____ Changes in visual acuity (frequent changes in ability to see well)
    ____ Difficulty with accommodation (switching focus from one thing to another)
    ____ Blind spots in vision

    ____ Sensitivities to medications (unable to tolerate "normal" dosage)
    ____ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
    ____ Sensitivities to foods
    ____ Alcohol intolerance
    ____ Alteration of taste, smell, and/or hearing

    ____ Frequent urination
    ____ Painful urination or bladder pain
    ____ Prostate pain
    ____ Impotence
    ____ Endometriosis
    ____ Worsening of premenstrual syndrome (PMS)
    ____ Decreased libido (sex drive)

    ____ Stomach ache; abdominal cramps
    ____ Nausea
    ____ Vomiting
    ____ Esophageal reflux (heartburn)
    ____ Frequent diarrhea
    ____ Frequent constipation
    ____ Bloating; intestinal gas
    ____ Decreased appetite
    ____ Increased appetite
    ____ Food cravings
    ____ Weight gain (____ lbs)
    ____ Weight loss (____ lbs)

    ____ Rashes or sores
    ____ Eczema or psoriasis

    ____ Hair loss
    ____ Mitral valve prolapse
    ____ Cancer
    ____ Dental problems
    ____ Periodontal (gum) disease
    ____ Aphthous ulcers (canker sores)

    ____ Difficulty with simple calculations (e.g., balancing checkbook)
    ____ Word-finding difficulty
    ____ Using the wrong word
    ____ Difficulty expressing ideas in words
    ____ Difficulty moving your mouth to speak
    ____ Slowed speech
    ____ Stuttering; stammering
    ____ Impaired ability to concentrate
    ____ Easily distracted during a task
    ____ Difficulty paying attention
    ____ Difficulty following a conversation when background noise is present
    ____ Losing your train of thought in the middle of a sentence
    ____ Difficulty putting tasks or things in proper sequence
    ____ Losing track in the middle of a task (remembering what to do next)
    ____ Difficulty with short-term memory
    ____ Difficulty with long-term memory
    ____ Forgetting how to do routine things
    ____ Difficulty understanding what you read
    ____ Switching left and right
    ____ Transposition (reversal) of numbers, words and/or letters when you speak
    ____ Transposition (reversal) of numbers, words and/or letters when you write
    ____ Difficulty remembering names of objects
    ____ Difficulty remembering names of people
    ____ Difficulty recognizing faces
    ____ Difficulty following simple written instructions
    ____ Difficulty following complicated written instructions
    ____ Difficulty following simple oral (spoken) instructions
    ____ Difficulty following complicated oral (spoken) instructions
    ____ Poor judgment
    ____ Difficulty making decisions
    ____ Difficulty integrating information (putting ideas together to form a complete picture or concept)
    ____ Difficulty following directions while driving
    ____ Becoming lost in familiar locations when driving
    ____ Feeling too disoriented to drive

  5. JLH

    JLH New Member



    * Exhaustion, made worse by physical exercise (100%)

    * Low-grade fever in early stages (60-95%)

    * Recurrent flu-like illness (75%)

    * Frequent pharyngitis (50-75%) (sore throats)

    * Joint and muscle pain (65%)

    * Severe muscle weakness (40-70%)

    * Stiffness (50-60%)

    * Post-exertional fatigue & flu-like symptoms (50-60%)

    * Multiple sensitivities to medicines, foods, and chemicals (40-60%)

    * Severe nasal & other allergies (40-60%) (often worsening of previous mild allergies)

    * Frequently recurring, difficult to treat respiratory infections (40-60%)

    * Dyspnea on exertion (labored breathing or hunger for air)

    * Painful lymph nodes (30-40%) (especially on neck and under arms)


    * Sleep disorders & unrefreshed sleep (50-90%)

    * Headaches (35-85%)

    * Visual blurring (50-60%)

    * Intolerance of bright lights

    * Parasthesias (30-50%) (numbness or tingling feelings)

    * Dizziness/Light-headedness (30-50%)

    * Ringing in the ears


    * Impaired cognition (50-85%)

    * Attentional difficulties

    * Calculation difficulties

    * Memory disturbance

    * Spatial disorientation

    * Saying the wrong word


    * Worsening of premenstrual symptoms (70% of women)

    * Nocturia (50-60%) (excessive urination during the night)

    * Tachycardia (40-50%) (abnormal rapid heart action)

    * Chest pain (25-40%)

    * Cough (30-40%)

    * Weight gain (50-70%)

    * Nausea, especially in earlier stages (50-60%)

    * Diarrhea, intestinal gas or irritable bowel (50%)

    * Intolerance of alcohol

    * Night sweats (30-50%)

    * Dry eyes (30-40%)

    * Dry mouth (30-40%)

    * Rash (30-40%)

    * Frequent canker sores (30-40%)

    * Herpes simplex or shingles (20%)

    * Symptoms worsened by extremes in temperature

    Here's another

    The numbers in parentheses are the percentage of CFIDS patients who experience those symptoms.

    Fatigue (100%) - usually made worse by physical exertion

    Cognitive function problems (80%)
    - attention deficit disorder
    - calculation difficulties
    - memory disturbance
    - spatial disorientation
    - frequently saying the wrong word

    Psychological problems (80%)
    - depression
    - anxiety
    - personality changes, usually a worsening of a previously mild tendency
    - emotional lability (mood swings)

    psychosis (1%)

    Other nervous system problems (100%)
    - sleep disturbance
    - headaches
    - changes in visual acuity
    - seizures
    - numb or tingling feelings
    - disequilibrium
    - lightheadedness (feeling "spaced out")
    - frequent and unusual nightmares
    - difficulty moving your tongue to speak
    - ringing in ears
    - paralysis
    - severe muscle weakness
    - blackouts
    - intolerance of bright lights
    - intolerance of alcohol
    - alteration of taste, smell, hearing
    - non-restorative sleep
    - decreased libido
    - twitching muscles ("benign fasciculations")

    Recurrent flu-like illnesses (75%) - often with chronic sore throat

    Painful lymph nodes - especially on sides of neck and under the arms(60%)

    Severe nasal and other allergies - often worsening of previous mild problems (40%)

    Weight changes - usually gain (70%)

    Muscle and joint aches with tender "trigger points" or Fibromyalgia(65%)

    Abdominal pain, diarrhea, nausea, intestinal gas "irritable bowel syndrome (50%)

    Low grade fevers or feeling hot often (70%)

    Night sweats (40%)

    Heart palpitations (40%)

    Severe premenstrual syndrome - PMS (70% of women)

    Rash of herpes simplex or shingles (20%)

    Uncomfortable or recurrent urination - pain in prostat (20%)

    Other symptoms:
    - rashes
    - hair loss
    - impotence
    - chest pain
    - dry eyes and mouth
    - cough
    - TMJ syndrome
    - mitral valve prolapse
    - frequent canker sores
    - cold hands and feet
    - serious rhythm disturbances of the heart
    - carpal tunnel syndrome
    - pyriform muscle syndrome causing sciatica
    - thyroid inflammation
    - various cancers (a rare occurrence)
    - periodontal (gum) disease
    - endometriosis
    - easily getting out of breath ("dyspnea on exertion")
    - symptoms worsened by extremes of temperature
    - multiple sensitivities to medicines, food, and other substances

    The FMS check list is just as extensive. So is Lyme, GWI, Candida, and a multitude of other illnesses. The symptoms overlap.

    Testing is an important factor. Keep in mind that some tests don't measure things very accurately. You do need to rule out things like Chiari Malformation, etc.

    There is an extensive library here at this site with more information that you can possibly swallow in a year. But give it a try.

    Learn how your body works. It's all connected. If the "gut" doesn't work properly, then a lot of other things aren't going to work right either. Likewise, if the adrenal glands, or thyroid, or liver, or hormones, or pituitary, or colon, or...or..or.. you get the idea. If any one part is not working properly, there is a domino effect, and systems start to fail. Each part is dependant on another part in order to function properly.

    No two people have exactly the same symptoms. What works for one may not work for another. So much depends on what exactly is happening in your body. If there are viruses running rampant, your treatment may be different that someone who seems to have FMS but may really just have a bad case of candida. (I considered that for myself for awhile. Turned out to not be the case.)

    There is hope. For all of us. Together we are learning so much about how it all works. Someone here is trying most everything. From difficult protocols to the very simple. Ask lots of questions. That helps all of us learn.

  6. angeljoe

    angeljoe New Member

    I really believe in the advice from this board. These people are terrific about giving advice and being very supportive.. It sounds to me that you are among the rest of us with all of these symptoms. I am 34 years old and have 2 amazing children. I am always hurting somewhere. I'm tired and fatigued all the time too. It's difficult to be a full time Mommy and wife with Fibro and Chronic fatigue.
    You have to learn to pace yourself. Try to line up chores that you can break up into tasks that won't wear you down all at once. Your symptoms could me any one of the problems on this board. Most symptoms go hand and hand with other syndroms. Myofacial, Fibromyalgia, Chronic fatigue, Lyme disease. I had one episode of the blurred vision and it really scared me. I would suggest that you go to a Rheumatologist for testing on these symptoms. There are FFC clinics all over the country that could help you too. There is a post on this board I found tonight listing all the tests for most of the problems we all have. You could print that list and take it to your PCP and get some of the testing done.
    Best of luck to you and Welcome to our family.
  7. JLH

    JLH New Member


    Is there a free clinic or health department that you can get free medical attention in your city? Have you checked with social services to see if you can qualify for a medical card? If not, you should start making calls to find out what medical services you can get.

    Sometimes the vocational rehabibilation offices can tell you what all you are eligible for. Or your hospital.

    You need to see if you could get to see someone to be treated for your saddness, which is probably depression. You could also benefit from some medication to help you sleep--like a mild muscle relaxer. I know you can't take too much medication with 4 children.

    If you could get a medical card, you could also benefit from a sleep study since you say you do not sleep well.

    Also an eye exam. The eye doc may give you some insight on your face pain.

    I know all of your children should have insurance. It is available from the state to all children. If they don't contact your local city or county health department and question them about it.

    Have you ever applied for SSDI?

    Let us know a little more and maybe we can all help you more.

  8. tandy

    tandy New Member

    back up top fpr more replys~
    your story sounds all too familiar to alot of us here~
    I wonder if you've been tested for the common auto-immune diseases which fit your symptoms.??
    Lupus,early RA,connective tissue disorders,etc..??
    Its a start~
    wishing you loads of luck on this journey for wellness.

    I have most of your comlaints by the way.
    right down to the cervix pre cancer.
    I have Fibro,arthritis (possible RA) bad neck disks and low back troubles. IBS and Endometriosis.
    And up till I was 30 I was as healthy as a mule!!
    keep looking for answers,.....
    Don't let Drs. shrug you off. (cause they try)
    Demand to get tested for everything and anything fitting your symptoms.
    It'll take awhile but you need to know.
    Best of Luck!!
    :) Tandy
  9. karatelady52

    karatelady52 New Member

    Your symptoms sound a lot like neurological lyme disease.

    The lyme test you were probably given was an Elisa which is very inaccurate and has a high percentage of false negatives. The test that is more accurate is the Western Blot and the lab to use is Igenex.

    Like Stormyskye said, lyme is also a clinical diagnosis. There are ways to treat lyme without a diagnosis using herbs. A good book on this is Healing Lyme by Stephen Buhner.

    I posted this a few months ago and will reprint it below. My thoughts and prayers go out to you.


    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

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