Advice Needed Badly

Discussion in 'Fibromyalgia Main Forum' started by gypsywomyn, May 24, 2006.

  1. gypsywomyn

    gypsywomyn New Member


    I don't know where to turn any longer. I also am not sure if I really have fibro or something else like ALS and I am very scared.

    I have been ill since January. I have been to several doctors and have had blood tests more than once done. I saw a neurologist who said there was nothing wrong. They end up writing me off as a psycho case.

    My symptoms make me feel so ill, I hurt from my eyes all the way down my body to my feet, legs and arms included. I cannot any longer walk comfortably but I do not tell people that. I have nausea, loss of appetite and a bitter taste in my mouth. In particular, my neck is very sore and makes cracking sounds. Sometimes I feel as if my throat is swelling up. I want to sleep 10 hours or longer.

    I now am afraid to even go to another doctor. I am afraid to tell my family and friends how ill I feel. Do these symptoms sound familiar? Thank you.

  2. dleaning

    dleaning New Member

    All of those symtoms sound very familiar!! Have you seen a rheumatologist yet? It sounds like FM to me. I spent 6 years trying to find out what was wrong with me. My neurologist even suggested MS since white matter lesions were found on the left front temporal lobe of the brain. She was just about to write a RX for it, until I asked her if this would make me feel any better and she said no, so I told her not to. I did see an MS specialist who confirmed that it wasn't MS, but maybe a low grade tumor (which it wasn't either!). Keep trying.....don't give up. It may take a while, but don't stop!!

    Hang in there, we are all here for you if you need venting! You came to the right place!!!

  3. Pianowoman

    Pianowoman New Member

    Many of your symptoms are similar to FM/CFS and it is quite possible that this is what you have. You have come to a wonderful place for support and information. Everybody here knows how you feel.

    I think you need to keep looking for an Doctor who understands these diseases. There is a Doctor referral at the top of this page where you might find someone in your area. You could also post a question that you are looking for a Doc. wherever you are.

    You deserve to have your pain treated appropriately. Sleep issues are common as well and many of us need to take something for sleep. A good Doc. can help you with that also. In the meantime, try Melatonin or Benedryl. If you can get a better sleep you might be less tired.

    It's a long road and it takes patience butif you spend time here reading old posts you may find other things that could help. There is a library on this site and a search function for post at the top left.

    Take Care and ask all the questions you like.

  4. dellalvn

    dellalvn New Member

    Sounds a lot like fibro to me. Are you currently taking any meds for any reason? The bitter taste in your mouth and nausea could also be a side effect of several different meds.
    It is very frightening because this is an invisible illness. I buy a lot of informational books and bookstores and try to read up on this and that seems to help. Good luck and we are always here for you.
  5. Marta608

    Marta608 Member

    All the symptoms sound very familiar and well may be FM. Get thee to a rheumatologist ASAP - and get something for sleep. If you can't sleep, you can't heal (a quote from my CFS specialist).

    Gentle hugs,
    [This Message was Edited on 05/25/2006]
  6. JewelRA

    JewelRA New Member

    All of this this sounds very similar to me too. I've lost count of how many doctors I've been too since last August trying to figure out all my pain and problems. It is so frustrating.

    But let me give you the advice my dear friend gave me last night - DON'T GIVE UP. You have the right to some relief and comfort and a doctor who will at least take you seriously and try to help you.

    What kind(s) of doctors have you tried? I'm sorry you may have said in your post but I'm very uncomfortable right now in my computer chair and can't concentrate.

    I pray you find some answers and relief soon. At least for the pain. You deserve to have something to take when you can't take it any more.

  7. hopeful4

    hopeful4 New Member

    Hi gypsywomyn,
    So sorry you are going through this. It can be extremely frustrating and downright scary at times. Getting the proper diagnosis is so important, but often elusive.

    Something to think about is, have you considered Lyme Disease? Lyme Disease is called "the great imitator" and can be misdiagnosed easily for such things as FM, CFIDS, ALS, MS, etc.

    The key to getting diagnosed positive or negative for Lyme is going to a doctor who can do the most reliable testing, and knows the most about diagnosing and treating. Surprisingly, most do not know enough about Lyme.

    Your best bet is to find a Lyme Literate Medical Doctor (LLMD) in your area. This can be found on lymenet dot org, or through a statewide support group in your state.

    The most reliable testing is called Igenex (the lab) Western Blot. The diagnosis itself, is clinical, meaning it's based on your history, symptoms, and the labs. A negative lab does not necessarily mean that you do not have Lyme. Also, one must be tested for co-infections.

    Neurologists and even infectious disease doctors are not always reliable as in the know about Lyme.

    You do not have to remember being bit by a tick, nor having a bullseye rash. At least 50% don't. I was sick for 5+ years, going doctor to doctor, before getting the Lyme diagnosis. Previously diagnosed with CFIDS and FM...I have those as well, caused by the Lyme.

    Please consider this possibility. I'll paste in further info below.

    Best wishes.
  8. hopeful4

    hopeful4 New Member

    This has been posted goes again.

    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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