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    Old 01-04-2004, 10:09 PM   #1
    Wittesea
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    Fibromyalgia- Comprehensive Information

    Hi everyone!

    I thought that I would put together one post that has a lot of information about Fibro and other things that are related to Fibro... so the info is mostly in one place and is easier to find when we are having a lot of brain fog I'm pretty much just compiling things that are already scattered around the board.

    I will start a different reply in this thread for each topic, so that it is easier to scroll to the info that you wish to find...

    So far I have added-
    -Symptoms
    -Diagnostic Criteria
    -Treatments (I will add more there soon)
    -Pain Journal
    -Myofacial Pain and Trigger Points
    -Trigger Points versus Tender Spots
    -Possible causes of Fibro **New**


    I want to add

    -other diseases/syndromes that are commonly seen in Fibro patients
    -What is Fibromyalgia? *** I will add this soon, I am in the process of creating a decent answer to this question

    What else??? Anything missing???? any ideas??? Add your 2 cents and ideas!

    ***I will be adding more things here as they come up as discussions in other threads also... so please speak up and start a new thread if you want to discuss any other Fibro topic.... and of course, add any info here that you have too***

    Edited on 2/22/04 to add-
    I apologize for not updating this recently and adding the new info yet... my life has been a little nuts lately... as soon as I have the time again, I will be adding more information

    Last edited by Wittesea; 02-21-2004 at 11:26 PM.

     
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    Old 01-04-2004, 10:11 PM   #2
    Wittesea
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    Re: Fibromyalgia- Comprehensive Information

    Fibromyalgia Symptoms



    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

     
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    Old 01-04-2004, 10:14 PM   #3
    Wittesea
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    Re: Fibromyalgia- Comprehensive Information

    Diagnostic Criteria


    According to the Americal College of Rheumatology-

    **History of widespread pain that has been present for at least 3 months. The pain is present in all four quadrants of the body. The four quadrants of the body are upper left, lower left, upper right, lower right.

    ** Pain in 11 of 18 Tender Points (aka tender spots) on digital palpation. Digital palpation should be performed with an approximate force of 4 kg. A tender point has to be painful at palpation, not just "tender".
    (Digital Palpation means pressing with a finger)

     
    Old 01-04-2004, 10:18 PM   #4
    Wittesea
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    Re: Fibromyalgia- Comprehensive Information

    Treatments



    Medications that are commonly used to treat Fibromyalgia-

    There are so many different medications that are used to treat Fibromyalgia. What works for one person, may not work for anyone else. When trying to find a medication that will work to reduce your Fibro symptoms it is often necessary to go through a trial and error phase where you try many different medications and/or different combinations of medications.


    Please talk with your doctor about any prescription medications.


    Anti-Depressants- many anti-depressants also reduce pain by increasing the amount of Serotonin and/or Nortripyline in your brain.
    Some examples are Paxil, Zoloft, Trazodone, Prozac, Wellbutrin, Effexor, Elavil, Remeron, and Pamelor


    Muscle Relaxers-
    Norflex, Flexeril, Zanaflex, Valium


    Anti-Anxiety- that may also used to reduce stress and muscle stiffness or to help you fall asleep at night.
    Ativan, Xanax, Klonopin

    Sleep medications-
    Ambien, Sonata


    Pain medications-
    non-prescription- Advil, Tylenol, Motrin
    non-narcotic- Ultram

    narcotics-
    (it should be noted that most people with Fibro only need narcotics during a pain flare, and it should also be noted a lot most doctors do not prescribe narcotics for Fibro although that position is slowly changing)


    **short acting (should be used on an "as needed" basis)
    - Percocet, Vicodin, Roxicodone, Lortab, MSIR,

    **long acting (need to be taken on a regular basis for continous relief)
    - OxyContin, MSContin, Duragesic, Kadian, Avinza,


    Prescription Pain Patch -

    Lidoderm patches work by numbing the area of the skin where they are applied. The active ingrediant in Lidoderm patches is Lidocaine, which is similar to the Novicaine that is used to numb your mouth during dental work.




    Fibro treatments that don't include medications-

    **getting good sleep- Quality of sleep is better than Quantity of sleep, it is better to sleep deeply than to sleep for a long time.

    **mild exercise and stretching- in a warm pool would be great if you have access, yoga works well too, and walking is excellent (when it isn't freezing cold outside)

    **stress reduction- Most people who have Fibro have found that an increase of stress means an increase in pain, so try to keep stress to a minimum (easier said than done). Depression and anxiety can also cause a flare in pain and other symptoms, so if you suffer from either (I have both) it will help your FM if you are getting treatment.

    ** use heat and massage as needed for specific areas of pain... I use something called a "Bed Buddy" it is a cloth tube that is filled with dry rice and you heat it up in the microwave. (2 minutes in the microwave and you have heat for nearly an hour). I love the Bed Buddy because I can have heat without being plugged into a wall. There are also several companies that now produce "pain patches" that either have heat and/or numbing qualities to them- I have tried a few brands (ben gay, icy hot) and they work pretty well.

    ** Lifestyle changes- This one was the hardest for me. I changed my pillow and I now use a leg pillow too (that was easy) but changing the way I do dishes and laundry and the way I vacuum... the way I stand and sit... (even positions in bed) ... all of that was hard for me. It took me a lot of practice and a lot of patience with myself to learn totally different ways of doing things... Adapting so that I can cause myself less pain was really worth it though.

    Last edited by Wittesea; 01-04-2004 at 11:34 PM.

     
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    Old 01-04-2004, 10:21 PM   #5
    Wittesea
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    Re: Fibromyalgia- Comprehensive Information

    Pain Journal


    **also known as Pain Diary, Symptom Diary or Symptom chart**


    I don't know how many people here keep a pain diary or pain journal, but mine has helped me so much... so I thought that I would share some thoughts with everyone.

    There are several ways that a pain diary will help you.

    1.) It helps me to figure out the things that cause me to go into a pain flare.

    2.) Pain journals are a great way to help your doctor to truly understand your pain and other symptoms.

    3.) My pain journal helps me to realize what factors make me feel better, and what factors make me feel worse.


    So here are the things that I keep track of in my pain journal.

    1.) Pain level.

    I use a 0-10 scale
    0= no pain
    2= very minor pain
    4= distracting pain
    6= pain that can't be ignored
    7= pain that takes all of my energy away
    8= it is hard to even hold a conversation, nausea and dizziness set in as a result of the pain
    9= unable to speak- crying out in pain- near delirium
    10= unconscious- passed out from pain

    2.) Quality of the pain (using describing words)

    aching, beating, blinding, brief, burning, cold, constant, continuous, cramping, crushing, dull, electrical, flashing, gnawing, grueling, hot, intermittent, lancing, nagging, nauseating, numbing, penetrating, piercing, pinching, pounding, prickling, pulsing, radiating, searing, sharp, shooting, sore, splitting, stabbing, stinging, squeezing, tearing, tender, throbbing, tight, tingling, wrenching

    3.) Where the pain is located (and the Scale and Quality of each individual area)

    4.) Recent activities

    5.) Action taken to try to reduce the pain (medications, physical therapy, heat, ice, relaxation or others)

    6.) Results of the action (feel better, feel worse, feel the same)

    7.) Other Fibromyalgia symptoms that I feel other than pain

    8.) My emotional feelings of the day (like if I am depressed because of my pain)

    9.) Medications (I make a quick notation of what time I have taken every medication during the day... it really helps, especially when I am feeling the Fibro Fog and I can't remember)


    That's it... it seems like a lot, but it really isn't. I use a full sized 'assignment planner' that is meant for students... but it has dated pages and plenty of space on each day for writing... it also has a monthly calander where I keep track of appointments...

    I just thought that I would share all of this... especially since it has really helped me to learn how to communicate my pain better. Having to think of a "describing" word every time I have pain has really increased my ability to communicate to my doctor. Since *I* understand my pain better, I can explain it better to the doc... and then she feels more comfortable giving me the strong pain medication that I need.

     
    Old 01-04-2004, 10:23 PM   #6
    Wittesea
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    Re: Fibromyalgia- Comprehensive Information

    Myofacial Pain and Trigger Points



    The Myofacia is the substance in your body that is between your muscles and your skin, it surrounds your organs, and it is in a lot of other places too... have you ever bought chicken from the grocery store and seen the sticky white film between the chicken skin and the meat? That is Myofacia.... The myofacia in kind of like the scaffolding that holds your whole body together.... it connects everything to everything, and holds it all in place.

    When you have Myofacial pain it is because the myofacia becomes hard and knotty (instead of being like jello).

    In CMP you will have hard, ropy bands of myofacia that you can sometimes feel by pressing on your body. These are called Trigger Points. When you press on a trigger point you might feel the pain in the place that you are pressing on, or you might feel the pain in a completely different part of your body.

    I had a trigger point on my scalp and another one near my temple. These 2 trigger points caused pain from my neck to my jaw, all over my face and the entire left side of my head. I also had a trigger point in my right shoulder blade area. This one caused pain through-out my shoulder and arm.

    There are several ways of treating trigger points, and medications are not the first choice. Pain medications might mask the pain, but it won't fix it. Unlike a Fibromyalgia Tender spot, you can actually treat a trigger point.

    The trigger points in my head were treated with shots of lidocaine (called a trigger point injection). Lidocaine is similar to novacaine, it numbs you. When you inject a trigger point with lidocaine it relaxes the myofacia, and often, the trigger point will disappear. I had my trigger point shots in my head in September, and those trigger points have not come back yet.

    Another way to treat a trigger point is through massage (called myofacial release, or trigger point therapy). That's how I treated the trigger point in my shoulder. The massage was in October, and again, the trigger point has not returned.

    There are 2 very important thing about treating trigger points (TrP).
    1.) you have to find them. This is not something you should do yourself because you will cause yourself a lot of pain.
    2.) you have to have a VERY good therapist or doctor who is well educated about trigger point injections and/or trigger point massage. The massage shouldn't be done in a masssage parlor- it is something that a physical therapist or other medically trained professional needs to do.

    A good therapist or doctor is the KEY. They have to know how to properly find the TrP, and that have to know the proper technique in treating them. It is not a simple shot or a simple massage. There is a right way to do it, and a lot of wrong ways to do it! and if it is done the wrong way, you will end up in worse pain.

     
    Old 01-04-2004, 10:27 PM   #7
    Wittesea
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    Re: Fibromyalgia- Comprehensive Information

    Trigger Points versus Tender Spots



    There is one big difference between CMP (chronic myofacial Pain) and Fibro... The trigger points of CMP can be treated, the tenderspots of Fibro can not be treated.

    The trigger points that are seen in myofacial pain can be eliminated or reduced in most people with massage, injections, certain stretches, and many other therapies.

    A trigger point is actually a hard, ropy, node that forms in the myofacia (the area between your skin and muscles)... there are ways to release the trigger point so that it becomes soft and jello-like again like the myofacia is supposed to be.

    A tender spot is simply a place on your body that feels bruised when you press on it, but there is nothing that is actually under the skin.

    Chronic Myofacial Pain has recently been classified as a neuromuscular disease... "disease" instead of "syndrome" now... a disease (cancer for example) is when there is actual physical evidence that a problem exists.... a syndrome (like Fibro) is simply based on a classification of symptoms, but no physical evidence can be found on any lab test (x-ray, blood test, mri, etc...) or during an examination (skin cancer is seen on examination for example).

    Yes, the tender spots of Fibro can be felt by the patient during an exam (as pain) but if you were dead, there is nothing to be found on your body that would show the medical examiner that you have Fibro...

    Myofacial pain was reclassified to a disease instead of a syndrome because it is known now that there is physical evidence that can be found and felt upon exam (the trigger points).... and again, if you were dead there would be evidence found in your body of myofacial trigger points...

     
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    Old 01-16-2004, 11:23 PM   #8
    Wittesea
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    Re: Fibromyalgia- Comprehensive Information

    Possible Causes of Fibromyalgia



    There isn't any research that points to anything in specific being the cause of Fibro.

    Some people believe that there are 2 types of Fibromyalgia. Primary and Secondary.... the theory is that some people have Fibro 1st and then develop other things because of the Fibro (pimary Fibro)... and that other people have some other problem first and then develop Fibro because of the original problem (secondary Fibro).

    It is sort of like the discussion about whether the chicken or the egg came first. Who cares? LOL

    Here is a list of things that are the current thoeries as to the causes of Fibro.


    Vaccination
    Virus, bacterial, or other infection
    Injury/trauma
    prolonged stress or emotional pain
    genetics
    Autoimmune diseases
    auto accident
    spinal problems
    other diseases
    Mono (eppstein barr)
    arthritis
    hormones
    Lyme disease
    Allergies
    hepatitis
    endometriosis
    thyroid problems
    endocrine disorders
    Gulf War syndrome
    Chemical or environmental sensitivities
    lack of serotonin
    central nervous system dysfunction
    sleep disorders (sleep apnea)
    anxiety/depression
    adrenal gland dysfunction
    muscle metabolism

    neurotransmitters (substance P is a neurotransmitter that causes pain to be felt, Fibro patients have an increase in substance P in their bodies... however no one knows whether the increase came as a result of the Fibro or if the increase caused the Fibro) It's another chicken/egg discussion that won't be answered until someone does more research.

     
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