So many questions.....

Discussion in 'Fibromyalgia Main Forum' started by terri_mj, Aug 12, 2005.

  1. terri_mj

    terri_mj New Member

    Hi, I'm new to the board and haven't been offically diagnosed with Fibromyalgia. I've ran the gauntlet of other blood tests already (thyroid, diabetes etc)

    I had given up on answers for a while and then FM was brought to my attention and after researching it I am 99% positive that this is what I have. I have mixed emotions, glad to finally (hopefully) have put a 'name to the face' of my illness(es), but scared of what's to come.

    Sorry, I'm rambling... questions
    How many of you were fairly sure you had FM before being diagnosed?

    Were you the one to present it to your Dr. or did they suggest it to you?

    I go to talk to my Dr. about testing on Mon. I have a checklist of symptoms to present to him. Any suggestions on questions I might need to ask?

    Also, do you have any good recommended reading on Fibromyalgia?

    From browsing amazon online, the book:
    What Your Doctor May Not Tell You About Fibromyalgia
    -- by R. Paul St. Amand, Claudia Craig

    Looked like a good one, but it was published in 1999, so I don't know if it would be 'out of date'

    I would love to hear your recommendations.

    Thank You so much!
  2. amejia

    amejia New Member

    My dx now is ankylosing spondalosis but it all started out with Fm. My doc now thinks that I do not have FM at all but as. I really like this board compared to some others I have been on.

    I dont have any recommendations for books so much as to say read everything you can about this. You are your best advocate.. The wonderful people here are so helpful and you dont feel so alone when you see how many other people are going thru or have gone thru the same problems you have.

    Anyway, welcome

  3. JLH

    JLH New Member

    Welcome to our board/support group! This is certainly a good place to come for information, questions, answers, humor, and a little bit of everything!!!

    Regarding suggestions for reading on fibro, this site ( has a LOT in informative articles about fibro, just click on the "Library" tab and some of the other tabs at the top of this page. Also, if you just "google" on Fibromyalgia, numerous sites will come up with tons of reading information that will be most helpful.

    As far as whether I presented the diagnosis of Fibro to my doc, or he presented to me, I can't remember!! I have had to for soooooo long! I also have systemic lupus and arthritis. All of these cause pain and fatigue and sometimes I don't know which one is causing what!!!!

    I have copied below a Fibro Checklist of what problems that fibro can cause for you to look at and see how many of these symptoms that you actually have. That might give you some info to talk with your doctor!!

    Also, I thought I would tell you what meds I take that help my fibro (I take about 23 meds a day, but I have tons of medical problems!):

    GREAT checklist of symptoms 01/09/05 11:29 AM
    Here is a copy of the symptom checklist that has been posted before (I didn't want to bump with all the old messages). This list is the BEST thing I've found to take to the doctor. I cut and past into Word, then delete those that don't apply. I add my name, and the date, then hand it to the doctor as soon as he asks what's wrong.

    When I don't have a list, the dr always seems to get stuck on the first one or two symptoms that I bring up and we never get beyond them. Bringing a list ensures this doesn't happen.

    ____ 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
  4. chazzsmom99

    chazzsmom99 New Member

    I wish I'd had that list a couple years ago! Wonderful!

    Teri--I was the one who brought to my dr.'s attention, fully expecting to be poo-poo'ed about it. She agreed!! One of the best places I have found for info was right here, but it can get really mind-boggling!!


  5. Shirl

    Shirl New Member

    I hope you do not have FM, but if you do you sure came to the right place for information.

    As for what I consider the best book on FM is; 'The Fibromyalgia Advocate' and 'Fibromyalgia & Chronic Myofascial Pain Syndrome' both by Devin Starlanyl. This is a doctor who has FM, and is just wonderful with symptoms/treatments, and all the questions you need to ask a doctor concerning this illness.

    She also has a website with additional information on it.

    Be sure to check the 'Library' link at the top of this board, there are a lot of recent research articles on FM and CFS here.

    Again, welcome to the board, and let us know how you do with the doctor.

    Shalom, Shirl
  6. naturebaby

    naturebaby New Member

    To answer your questions from my own experience.....

    Yes, I was pretty sure I had fibro before I was diagnosed. I had a fast onset, with dizziness, vertigo, extreme fatigue and muscle pain like "being hit by a truck". Also severe muscle spasms/knots in my shoulder. Then the insomnia started! Couldn't figure out what was wrong, my doctor ran numerous tests and kept close monitoring on me (ie. every 2 weeks) - she's the BEST!!!

    She sent me to physio and I went to registered massage therapy. The massage therapist was working on my arm and hit the "tender point" near the elbow which I wasn't even aware of.....I jumped off the table in pain! She was the one who first suggested fibro to me. I then brought it up with my doc, was referred to a rheumatologist, who diagnosed me after 2 appts. and the background provided by my GP and physio guy.

    The checklist above is excellent. I also keep a pain/meds journal for my doctor, it's very helpful for seeing patterns, determining what's working and what isn't, etc.

    I haven't got any book recommendations. I did read "From Fatigued to Fantastic" which has some good info. But I personally haven't made it to "fantastic" yet!

    This website is where I've learned the most about fibro and I've found wonderful support and fellowship here, any time of day or night.

    Welcome to the board and I wish you well! nature
  7. Seeseaisme

    Seeseaisme New Member

    You will find lot's of caring people here and tons of information.

    My doctor recommended that same book only a month ago so I don't think it's outdated.

    My diagnosis came when I was under extreme stress. I was recovering from bronchitis and ashtma and my father was in the hospital with kidney failure on his deathbed (he's fine now 82, and going on good).

    The physician's assistant diagnosed me. I was there for a follow-up on my breathing problems and I told her I felt like I had been beaten in my sleep. She poked me here and there and I wanted to scream each time. She then said oh, well, you've got fibromyalgia, it's a phsycosamatic thing.

    That was 2 doctors and 3 years ago now. I don't know if I'd say, Do you think I have fibromyalgia?. That's a leading question. But let them know your symptoms and have it checked out.
  8. terri_mj

    terri_mj New Member

    Thank you for all the warm welcomes, well wishes great information!!!

    Jhl- that is the same checklist I have printed out to take. I rank fairly high (5 or above) on almost all of them. There are a handful of syptoms that I don't posses or am not sure of. Except for the emotional catergory, and that's only because he's been treating me for depresson and I've been on Effexor for a few months now. So I listed those rankings in terms of before and after I've been on the meds.

    Again, thank you so much. What a great board and wonderful people. I find it so much more helpful talking with people who are experiencing it.


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