Is this really FM or just a simple anwer to a hard question??

Discussion in 'Fibromyalgia Main Forum' started by cybelle72, Feb 14, 2006.

  1. cybelle72

    cybelle72 New Member

    HI, I'm new here,and I'm really confused & frustrated by everything. I wonder if the diagnosis of Fm is premaature, if my doctor just doesn't care enough to find a real answer.

    I'm 27, and my entire life I have had frequent incidents of severe pain deep in my legs between (but not including) my thighs and ankles, and in my arms between (but not including) my shoulders and wrists, none of which affects my joints, or causes any visible inflammation. It feels as if my bones ache, but I'm not sure if it is bone pain or muscle pain. It's worse in cold, better in heat. I have had headaches almost every day since birth as well. i suffered from 3-4 migraines a week on top of the normal headaches.

    But I have had NO pain in my back, hips, shoulders, or neck, no swelling, no joint pain, no muscle weakness.

    The pain in my arms and legs is severe, but not debilitating, I've mostly managed to lead a normal life.
    My mother always told me it was growing pains. Well, at 27 i am done growing. I finally saw a doctor about 6 months ago, now that I have health insurance for the first time since I was 18. At teh first visit she listened to my symptoms, prescribed me Cymbalta, reffered me to a rheuamatologist and had blood drawn to have me tested for lupus, RA, lyme, and diabetes, the entire visit lasted about 15 minutes. .

    At teh next visit, she told me that all my tests were normal, that I have fibromyalgia.

    Rheumatologist tested me for mercury, at my suggestion, and arsenic. Semt me a letter that told me all my tests were normal and continue the cymbalta.

    I just find it hard to believe that a doctor would diagnose FM like this, no pressure point tests or anything. Just"We don't know what's wrong, these 6 tests are "Normal",, so you must have FM".

    I guess what I'm asking is, what should I do next?? I can't afford a FMS specialist that doesn't accept my insurance, I already looked into that. And I have read about how difficult it is to diagnose lupus and etc. with simple blood tests. Do I go back armed with a list of possible causes and tests and demand they be explored? Do I find a new doctor and see what they say, or just give them my lists of causes and tests adn tell them I want them explored?

    How do you deal with this?? It's so frustrating, not knowing what is wrong with me, and feeling like the docs don't even take it seriously. And my symptoms seem to be getting worse every day.

    If anyone is interested, here is a mostly complete list of the symptoms I have been experiencing on and off my whole life, which I always thought were normal untill I started researching this condition.

    II have had incidents of severe pain deep in the muscles of my legs between (but not including) my thighs and ankles, and in my arms between (but not including) my shoulders and wrists, none of which affects my joints, or causes any visible inflammation. I have had headaches almost every day since birth as well. i suffered from 3-4 migraines a week on top of the normal headaches.

    But I have had NO pain in my back, hips, shoulders, or neck, no swelling, no joint pain, no muscle weakness.

    The pain in my arms and legs is severe, but not debilitating, I've mostly managed to lead a normal life

    I often get blurred vision, things will slide out of focus, and I have to concentrate to bring them back into focus

    I sometimes get tics,my lip or eye will twitch or throb

    I also get floaters in me eyes, and always have goop in the corners of my eyes, always present, yet my eyes frequently feel dry and itchy.

    Someimes (1-2 x per month) I get the sensation that something is in my eye,it's scratchy, I can't find anything, but long strands of mucousy stuff comes out of my eye, and me eye lining gets inflamed and red, and still feels like there is something in it, even after flushing with saline again and again, can stay that way for hours.

    I feel like I am not even here at times, like looking down at myself, an out of body feeling

    Occasionally I get a sensation of tightness in chest, can't quite fill my lungs, but can still easily take shallow normal breaths.

    I bruise very easily, there are always several bruises on my arms and legs, or even buttocks and stomach that I can't remeber occuring, cna't ever remember what casued them.

    I get a numb feeling that sometimes takes over my whole head , feels like my head is inflating, or pulsing, getting bigger and smaller, very slowly, like a baloon being inflated nad deflated slowly.

    I sometimes seems like I'm underwater or have my head wrapped in thick cotton for a while and then it clears again, can come and go in minutes or last for hours.

    Frequntly when walking I get a feeling of tearing like pain in arches of my feet

    I get exruciating migranes several times a month, and painful headaches daily. THe migraines often have accopnaying nausea, and I need to seal myself away from light and noise. I daily develop a headache several hours after waking, and less frequently(2-3 X per month) wake with a headahce.

    I frequently feel as if the room is spinning, that I'm still but the room is moving around me, or f I'm sitting in a car, t car feels like it is moving, but it is clearly stopped.
    I frequently lose my sense of time,or place, feel like I already did something, strong sensation of deja vu

    If I'm sitting, my foot is shaking, often times I will trace objects or shapes or words in the air with my foot, without realizing I am doing it, my feet seem to always be moving but there are no accompanying odd feelings like RLS is described, no tingling, or bugs crawling.

    I've blacked out and hit the floor 4 times that I can remember,staying unconcious for more than 30 seconds each time, twice while on the toilet, twice while in the shower, all 4 times I hit my head hard enough to leave a sore spot, once I cut it open and had 18 stitches in my eyebrow.

    Allergies, confirmed animal dander, dust, pollen

    Post nasal drip

    Drooling in sleep

    Bouts of diarhea and constipation, several times a month for each.

    Swollen glands, often one gland in neck will swell, then go away

    Dry cough that comes and goes

    Constant teeth clenching, all day, also grinding while sleepiung

    frequent dizziness when turning head or changing field of view

    Runny nose

    Sore throat that somes and goes

    Stiff neck 1-2 x per month

    broken sleep, i never sleep more than an hour or two without wakin, and wake to pee 5-6 times a night

    unrefreshing sleep, always feel exhausted when waking in the morning

    go to bed freezing, no matter the temerature, wake up sweating in the morning

    Fatigue, often fall asleep in midday, or feel exhausted throughout the day

    Loss of libido

    Low back pain at night sometimes, can't lay comfortable, not frequently, less than 3 tims a month

    Difficulty speaking or remembering familiar words

    Directional disorientation, get lost frequently, even if i've been there dozens of times, have no sensse of direction at all

    Short-term memory impairment

    Weight gain:30 pounds in the last year after a lifetime of eating anyhitng and everything i want, never gaining a pound

    falling sensations before sleep , often when almost asleep, i'll have a dreamlike feeling that I've stepped off a curb and it will jerk me awake


    Unexplained toothaches

    fluttery heartbeat
    abdominal cramps
    Appendicitis-like pains
    Carbohydrate, sugar & chocolate cravings

    Sensitivity to cold,humidity,pressure changes/light/wind

    Tendency to cry easily

    Night driving difficulty

    Irritable bowel

    Urinary frequency +15-25 times a day

    Painful intercourse

    Numbness and tingling in fingers and feet

    Buckling knees

    Problems climbing stairs, hips are stiff

    Mood swings, irritability

    Trouble concentrating

    Problems holding arms up

    "Fugue"-type states (staring into space before brain can function

    Carpal tunnel-like pain in wrist

    itchy hands, between fingers, no rash

    once, about a year ago, I had a rash on my palms and feet, for 2 days, small whitish bump surrounded by redness, no itching,or oozing, or pain, emergency room doctor said it was unexplainable, it went away the next day

  2. CooBax

    CooBax New Member

    wow cybelle72,

    Unfortunately I may not be much help....your symptoms are similar to mine and I have no idea what I have. What tests have you had done? Have you had an MRI? Have you seen a neuroligist? I am in the middle of getting tested for lyme...properly that is. Let me know what tests you have had done.

    I was able to find quite a bit of info on this board so keep checking.

  3. CooBax

    CooBax New Member

  4. karatelady52

    karatelady52 New Member

    You might want to try to find a doctor who will test you for parasites, viruses and bacteria. I went to many, many doctors who never tested me for these yet many with FM/CFS have underlying viruses and bacteria causing their strange symptoms.

    I would also rule out lyme disease by getting tested with the Western Blot and not the Elisa. Here's a list I posted last year of lyme symptoms. A person doesn't have to have all these symptoms (I don't yet I have lyme) but it sure would be good to rule it out:

    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
    If you are contemplating testing, the Western Blot through a lab called Igenex gives a much more accurate test result. Many use the Elisa and can get a false negative.

    A clinical dignosis is important along with the lab test as the article says. Its also good to find an LLMD (lyme literate MD) as many doctors don't know much about lyme. The Fibromyalgia and Fatigue Centers are also gaining knowledge of this fast growing disease.

  5. Cromwell

    Cromwell New Member

    I think it could be FM for sure. Have you had Lymes tests done properly? Also, some llabs are very poor at doimng correct ANA testing so you may want to be re tested.

    My FM came it fits and starts really over the years. You will not generally see any joint swelling as it is not actually a joint disease just feels like it.

    I do hope you can find some relief. I think many people are still traling to doctor after doctor looking for something, including me.

    I think the only thing we have is to rule out other diseases and what may be left is FM. The trigger spots need a certain pressure and many doctors don't know exact spots and what pressure to use, and in any case, not all FM people have all.

    Good Luck.

    Anne C
  6. futurehope

    futurehope New Member

    You should have more tests to rule out other things. It is VERY IMPORTANT to know that this is really what you have. Go to another Doctor!!!!

    Love and prayers,
  7. mahx

    mahx New Member

    ...but some of the symtoms could be from ms. My best advice is to get on the computer and start doing your own research. It is very confusing.......all people with fibro do not all have the same symtoms....same with the other things mentioned in an earlier post. This board has excellent does the chat room. Good luck to you.....the hardest part is just wanting answers....and not being able to get any. Look forward to chatting with you.

  8. cybelle72

    cybelle72 New Member

    for all your help.

    I plan to get more tests done, I've been doing a lot of reading, and it is all so confusing.

    So far the only test the doctor has done ar the lyme, lupus,diabetes and rheumatoid arthritis. She never suggested any others. I'll have to make a list of symptoms and a list of tests and visit another dotor and see what they say.

    I appreciate all the advie!!

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