newly diagnosed with firbromyalgia

Discussion in 'Fibromyalgia Main Forum' started by bozsike, Jan 10, 2006.

  1. bozsike

    bozsike New Member

    Hi,

    After 7 months of many questions and many tests I was diagnosed today with firbromyalgia. I am glad that, at least, I have a name to what I have been feeling. I am nervous as to what I can expect. The doctor did not give me too much to go on. Any advice?
  2. Flbrofog

    Flbrofog New Member

    Welcome to the board. Unfortunately, I also had a doctor that didn't give me too much to go on. What kind of doctor is he? A rheumatologist? Usually, they know the most about fibro, in my opinion. I have a pain doctor, but he specializes in fibromyalgia. I went to my PCP and to a neurologist, and didn't get help at all! But my advice to you would be to write out everything on a sheet of paper and when you next see the doctor have him answer it for you! You are paying him! You have the right to have your questions answered about fibromyalgia and the right to know what type of treatment he will be giving you.
    Then, I would keep coming to our message board here, because everyone knows what you're going through! You can ask questions here and never feel intimidated or think that you're asking silly questions. We all learn from others. And you'll soon find you'll want to come here a lot, because you'll make friends here. Friends who really care what you're going through. You're right, it's great to know you finally found a name to your condition! Now you can go on the internet and find out so much about fibro. We all experience our pain differently and we all have fatigue. I feel like I was put in a 4 ft by 4 ft. heavy wooden box for 24 hours without moving and then let out. I feel like that just about every morning.
    I'm sure you'll receive some type of medications too. We all are trying something, even if it's just vitamins and stretching exercises. Never overdue exercising though. Again, welcome, and you will find friends here who care and will give you advice and laughter! Sometimes, laughter and joking is the best medicine. You will also be educated through members on this board and on other fibromyalgia sites. Take one day at a time! We're here for you! Gentle hugs,
    Barb
  3. Countrymom

    Countrymom New Member

    Welcome,

    Glad you have a diagnosis but sorry it is this.

    This board is great, jump right in.

    Dani
  4. Jen102

    Jen102 New Member

    can find a treatment plan that gives some relief. Blessings to you. jen102
  5. Lolalee

    Lolalee New Member

    ..so sorry you have FMS, but one thing that has proved helpful to me is to keep a record (in the computer, a journal,etc.) of all your symptoms, different doctors, medical tests, medicines and supplements. Create a medical history. Also, I agree with the suggestion to write down your questions before your doctor's appointment. Many of us with FMS and/or CFIDS have cognitive difficulties and memory loss. A written medical history and a record of your experiences will prove invaluable to you and to your doctor(s).

    There are many websites and books with good info. Read and educate yourself. Don't fall for every supplement that claims that it will heal you or change your life. Unfortunately, some of the testimonies with these products are exaggerations or just plain lies. To date, there is no cure for FMS or CFIDS.

    Blessings to you.
  6. lovethesun

    lovethesun New Member

    This board has a wealth of info and some real good support.Glad you are here.Linda
  7. JLH

    JLH New Member

    Welcome to our board and online support group. Most rhuemys will tell you that they best thing for fibro is something like Elavil to help you sleep, and regular exercise. A TON of people will take exception to the exercise part. I know, I personally can not exercise because I have a ton of other serious illnesses, but I have done the warm water aerobics and they DO help me feel better. The longer you are inactive, the stiffer you will get, and the more pain you will have.

    Most of us are on an antidepressant (I take Cymbalta). They help people in chronic pain. I also take Neurotin which helps my pain. Then, I take Zanaflex, a muscle relaxer to help sleep.

    A heating pad is my best friend! Long hot showers also help me.

    I am going to copy you a List of Fibro Symptoms which will show you how many of little problems that you may have which might be contributed to fibro.

    Here it is:


    Fibro Symptom List

    GENERAL
    ____ 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


    PAIN
    ____ 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



    GENERAL NEUROLOGICAL
    ____ 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



    EQUILIBRIUM/PERCEPTION
    ____ 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



    SLEEP
    ____ 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)



    MOOD/EMOTIONS
    ____ 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


    EYES AND VISION
    ____ 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
    ____ 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



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




    GASTROINTESTINAL
    ____ 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)


    SKIN
    ____ Rashes or sores
    ____ Eczema or psoriasis



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



    COGNITIVE
    ____ 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

  8. rachel432

    rachel432 New Member

    i was just diagnosed a month ago. this message board has been the best thing i could have ever found. all the messages here have given me some direction and hope. thanks to all!
    rachel[This Message was Edited on 01/11/2006]
  9. marw

    marw New Member

    I really, really liked reading this thread. I need to come here more often, and get to know people. I feel very alone.

    I was diagnosed 4 years ago, but have not made much progress. I cannot take any of the "mind bending" (for me) drugs, so no anti-depressents or anti-seisure drugs. Recently I cannot take Ibuprofen because of stomach disturbances. I do have a Rheumatologist, but he will not prescribe opiate meds, so I have found an understanding doc to do that....and tryng to keep it as low as possible. I know about dependency, but there is no way to avoid. I think it will be OK, as long as it does not turn into addiction. If I should want to go off the Vidodin, I will go slowly. It only brings the pain down by about 50 per cent, but that is so much better than before! I wish I could have used the Fentanyl Patch, but even the lowest dose was too strong for me. I also take.5mm of Ativan for Axniety. I tried Zanax, butit had the opposite efect, and I had to scrape myself of the ceiling--very hyper! Anaflex weakens my muscles too much...loosey/goosey...so 2 mm. of Valium is what I use at night for sleeping. I used to take 5 mm. of Valium but was afraid to mix the full dose now that I take the Vicodin.

    I think I need just to know people and to hear what they do that works, and ESPECIALLY when I develop a new symptom, to have a place to come and check it out. I have so many! Another time I will post a list.

    Thank you listening, and good luck to you all.
    Margaret