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AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
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  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Would you consider your pain to be widespread and occurring in more than one spot on your body?
    __Yes __ No
    __Yes __ No


    10
    With 0 being no pain and 10 being the worst pain you can imagine, please choose the one number that best describes your pain.

    0 1 2 3 4 5 6 7 8 9 10

    Pain at its worst in the past 24 hours.
    Pain at its least in the past 24 hours.
    Pain on the average.
    Pain you have right now.

    With 0 being does not interfere and 10 being completely interferes, choose the one number that describes how, during the past 24 hours, pain has interfered with your:

    0 1 2 3 4 5 6 7 8 9 10

    General activity
    Mood
    Walking ability
    Normal work
    Relations with other people
    Sleep
    Enjoyment of life

    From Brief Pain Inventory

    aching throbbing shooting stabbing gnawing pricking
    sharp tender burning exhausting tiring penetrating nagging numb miserable unbearable dull radiating squeezing cramping deep

    From Katrina Berne


    PAIN

    • Headache
    • Tender points or trigger points
    • Muscle pain
    • Muscle twitching
    • Muscle weakness
    • Severe weakness of an arm or leg
    • Full or partial paralysis of an arm or leg
    • Joint pain
    • TMJ syndrome
    • Chest pain

    http://www.cureresearch.com/sym/nerve_symptoms.htm
    • reduced sensitivity to pain
    • extraordinarily sensitive to sensations
    • abnormal skin sensations
    • pain worsens on exercise
    • pain relief from rest
    • severe burning pain
    • burning pain
    • sensitivity to touch
    • pain on defecation
    • pain on ejaculation
    • temple pain
    • paresthesias
    • numbness
    • hand tingling
    • foot tingling
    • abnormal skin sensations
    • urethral pain
    • kidney pain
    • rectal pain
    • loss of temperature sensitivity
    • pain exacerbated by cold temperature
    • Head pain
    • jaw pain
    • shoulder pain
    • neck pain
    • painful bowel movement
    • loss of pain sensitivity,
    • burning pain
    • tingling sensations/pins and needles
    • abnormal sensations

    Mouth/Stomach

    • A tinny, metallic or ammonia, or unusual smell or taste
    • Aerophagia (swallowing too much air, stomach distention, belching)
    • Burning mouth, feeling like the inside of your mouth is burning, or tingling, or like pins and needles, or all of these together or at different times
    • Burning tongue, feeling like your tongue is burning, or tingling, or like pins and needles, or all of these, or all of these together or at different times
    • Choking
    • Constant craving for sugar or sweets
    • Constipation
    • Diarrhea
    • Difficulty swallowing
    • Difficulty talking, pronouncing certain letters or sounds, mouth feels like it isn't moving right, slurred speech
    • Dry mouth
    • Feeling like you cant swallow properly or that something will get caught in your throat
    • Feeling like your tongue is swollen
    • IBS
    • Lack of appetite or taste
    • Lump in the throat, tight throat, something stuck in your throat
    • Mouth muscles twitching/jumping
    • Mouth or throat clicking or grating sound/noise when you move your mouth or jaw, such as when talking
    • Nausea
    • Nausea vomiting
    • Nausea or abdominal stress
    • Numbness
    • Numbness tingling, numbness and tingling
    • Stomach upset, gas, belching, bloating
    • Teeth grinding
    • The thought of eating makes you nauseous
    • Tight throat, lump in throat
    • Throat or mouth clicking or grating sound/noise when you move your mouth or jaw, such as when talking
    • TMJ
    • Tongue symptoms - Tingly, stretched, numb, frozen, itchy, crawly, burning, twitching, jumpy, aching, sore, or swollen tongue (when it isnt).
    • Urgency to urinate, frequent urination, sudden urge to go to the washroom
    • Vomiting
    • Skin (anxiety sym

    Head

    Head (anxiety symptoms commonly associated with the head): http://www.anxietycentre.com/anxiety-symptoms.shtml

    • Burning, itchy, tight scalp
    • Dizziness
    • Dizzy
    • Dizziness or light-headedness
    • Frequent headaches, migraine headaches
    • Feeling like there is a tight band around your head, pressure, tightness
    • Head, neck or shoulder pain, tightness/stiffness
    • Head zaps, head tremors
    • Giddiness
    • Numbness
    • Numbness tingling, numbness and tingling
    • Shooting pains, stabbing pains, and odd pressures in the neck, head, or face
    • Shooting pains in the face
    • Shooting pains in the scalp or head
    • When you close your eyes you feel like are beginning to, or will, float upwards
    • Sore jaw that feels like a tooth ache
    • TMJ (Temporo-Mandibular Joint) - clenching of the jaw or grinding of the teeth

    CHEST

    Chest

    • Chest tremors, trembling in the chest, chest feels like it is vibrating
    • Chest pain or discomfort
    • Concern about the heart
    • Feel like you have to force yourself to breath
    • Find it hard to breath, feeling smothered, shortness of breath
    • Frequent yawning to try and catch your breath
    • Heart Palpitations beating hard or too fast, rapid heartbeat
    • Heart - Irregular heart rhythms, flutters or skipped beats, tickle in the chest that makes you cough
    • Pounding heart, heart feels like it is beating too hard
    • Rib or rib cage tightness, pressure, or feeling like a tight band around the rib cage

    Body

    • Allergy problems, increase in allergies (number, sensitivity, reactions, lengthier reactions)
    • Back pain, stiffness, tension, pressure, soreness, spasms, immobility in the back or back muscles
    • Blanching (looking pale, loss of color in the face or skin)
    • Blushing, turning red, flushed face, flushed skin, blushing, red face or skin
    • Body jolts, body zaps, electric jolt feeling in body, intense body tremor or body shake
    • Body temperature increase or decrease, change in body temperature
    • Burning skin, itchy, crawly, prickly or other skin sensations, skin sensitivity, numbness on the skin
    • Burning skin sensation on the face, neck, ears, scalp, or shoulders
    • Chest pain, chest tightness
    • Choking
    • Chronic Fatigue, exhaustion, super tired, worn out
    • Clumsiness, feeling clumsy, co-ordination problems with the limbs or body
    • Cold chills, feeling cold
    • Craving sugar, sweets, chocolate, usual craving for sugar and sweets
    • Difficulty speaking, moving mouth, talking, co-ordination problems with the mouth or tongue
    • Dizziness, feeling lightheaded
    • Dizzy, feeling dizzy
    • Electric shock feeling, body zaps
    • Excess of energy, you feel you cant relax
    • Falling sensation, feel like your are falling or dropping even though you aren't
    • Feel like you are going to pass out or faint
    • Feeling cold or chilled
    • Feel wrong, different, foreign, odd, or strange
    • Flu-like symptoms, general malaise, feel ill, like you are coming down with a flu
    • Flushed face, red face, flushed skin
    • Head Zaps
    • Heart palpitations, racing heart
    • Hyperactivity, excess energy, nervous energy
    • Increased or decreased sex drive
    • Infection - increased infections, persistent infection
    • Mouth or throat clicking or grating sound/noise when you move your mouth or jaw, such as when talking
    • Muscles that vibrate, jitter, tremor, or shake when used
    • Muscle twitching
    • Nausea
    • Nausea vomiting
    • Neck, back, shoulder pain, tightness/stiffness
    • Night sweats, waking up in a sweat, profusely sweating at night
    • No energy, feeling lethargic, tired
    • Numbness
    • Numbness tingling, numbness and tingling
    • Numbness and tingling, and other skin sensations on hands, feet, face, head, or any other places on the body
    • Persistent muscle tension, stiffness
    • Pounding heart, heart feels like it is beating too hard
    • Pulsing or throbbing muscles. Pulsing or throbbing sensation.
    • Rib or rib cage tightness, pressure, or feeling like a tight band around the rib cage
    • Sexual Dysfunction, sexual uninterest
    • Shooting pains, stabbing pains, and odd pressures in the neck, head, or face
    • Shooting pains in the face
    • Shooting pains in the scalp or head
    • Skipped heart beats
    • Sore or tight scalp or back of the neck
    • Startle easily
    • Sweating, uncontrollable profuse sweating
    • The floor feels like it is moving either down or up for no reason
    • Tightness in the ribs or rib cage area, may also feel like a tight band around the ribs or rib cage area.
    • Tingling sensations, anywhere on the body, including the hands, feet, legs, arms, head, mouth, chest, groin area
    • Throat or mouth clicking or grating sound/noise when you move your mouth or jaw, such as when talking
    • TMJ
    • Trembling or shaking
    • Twitching
    • Unsteadiness, dizziness, feeling dizzy or lightheaded
    • Urgency to urinate, frequent urination, sudden urge to go to the washroom (similar to urinary tract or prostate infection symptoms)
    • Warm spells
    • Weak - feel weak, weakness, low energy, light, soft, like you may faint
    • Weak legs, arms, or muscles
    • Weight loss, weight gain
     
  2. awol

    awol *****

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    I would suggest categories for muscle pain, joint pain, headaches, sore throat/lymph and chest pain, and also consider how to make the questions work for symptom cycles and time. For example, headaches were a problem for me at the beginning and for a very long time. They are no longer frequent at all. Early in my illness however I had no muscle cramps. I have had those in the past year. Similarly, I don't remember acute chest pain early on, but did have that several times in the past two years. Sore throats are also more common now.
     
  3. Nielk

    Nielk

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    Queens, NY
    This can become very extensive. you would have to categorize every body part and then subset them as to when during your illness
    you have felt that way. I doesn't seem too practical to me. There is a difference though if you feel headaches for example, it involves your whole being whereas pain in the legs is just that - pain in the legs. It depends what you want to achieve with this survey. You also have to consider that if it's too lengthy and involved, some people might not bother or have the energy to participate.
     
  4. awol

    awol *****

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    I agree, it would have to be done carefully. It's just that I can't answer the questions as they are. Something is so fundamentally vague and off feeling that I worry it is not useful as currently designed.
     
  5. pollycbr125

    pollycbr125 Senior Member

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    yorkshire
    I have a major issue with pain btbh I get several different types of pain and thus depending on which pain it is depends on the severity .

    i get electrical pain from my shoulder up into a muscle in my brain , i get inflamation pain in several joints , muscle pain which is again different , i get a pain on my right side near my appendix also a pain above my belly button and also pain where my kidneys are again different from the previous pains and the worst pain I get is severe pain in my legs which feels like bone pain also in the hips sometimes , this is a totally different pain to the muscle and joint pains . I also suffer migraines which again are a different pain and pain at the base of my neck and base of my spine which is different to the other pains . I get a weird pain down my right arm which i dont know if its connected to the shoulder pain but i cant even begin to describe what type of pain that is it also goes kinda numb too but with pain if that makes sense .

    so like others have said i couldnt answer the questions as it depends where the pain is and what type of pain it is . I did not realise until i got this illness just how many types of pain there are . I get a couple of other weird pains that i cannot even describe they are so bizarre .
     
    taniaaust1 and Xandoff like this.
  6. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    I think we need better descriptions of pain. We certainly need to differentiate between migraine like pain and other headaches...Pain could be a very interesting part of this survey.

    Questionnaire length is a problem. I'm envisioning people signing into their profile and then being giving a list of questionnaires to do that they can do at their leisure.
     
    Xandoff likes this.
  7. voner

    voner Senior Member

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    Cort,

    Another problem when trying to describe pain, and many of the other symptoms is that the 0 to 10 scale just does not work. It is misleading in most cases.

    Pain symptoms are extremely variable., As are fatigue etc. symptoms.

    It is so frustrating to go into a doctors office and have them ask you or at least 1 to 10 scale questions, because one day you can answer three and the next day you would answer nine.

    One idea is to make it a functional or "Activities of daily living" related scale. Tie the number to some sort of function. Much more descriptive.

    Communicating your symptoms to someone else, especially a medical practitioner, is just so difficult. Putting it into terms that laypeople or medical people can understand and putting it on a functional scale seems to help.

    I forget who's credited with coming up with this type of scale, but one just related to pain and others to any other major symptoms would be quite helpful.



    CFS & Fibromyalgia Rating Scale


    100 Fully recovered. Normal activity level with no symptoms.
    90 Normal activity level with mild symptoms at times.
    80 Near normal activity level with some symptoms.
    70 Able to work full time but with difficulty. Mostly mild symptoms.
    60 Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
    50 Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.
    40 Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
    30 Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
    20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
    10 Mostly bedridden. Severe symptoms.
    0 Bedridden constantly. Unable to care for self.

    Foe me, I suspect most of us, the symptoms that really matter of the ones that decrease my abilities to function in normal society. As for the other symptoms, I would love to be healthy enough to have more minor inheritance to be a primary complaint. .
     
  8. voner

    voner Senior Member

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    Here's another idea. Perhaps the symptoms could be put into a X/Y chart and be cross-referenced against other relevant marker information. take for example, does the symptom decrease your able ability to function in daily living?, Is this symptom of a diagnostic marker for CFS, POTS?, viral infection?...

    Whew! I think is pointing out just how heterogeneous the ME/CFS population is and why it is so difficult to communicate and sort through these symptoms.

    I just keep in mind the old computer programming Term "garbage in, garbage out". I think that is reflected so many of the generalized government-funded studies that are produced. I don't think a controlled enough patient population, so whatever their data is no matter how well-controlled experiments, data going and was bad, and the output Data is very suspect, if not misleading in many cases.
     
  9. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
    It might be more helpful or more accurate to ask for pain levels over a 72 hour period or even a week because sometimes you can have acouple of good days, but the 4 previous days were pure terror. Just a suggestion.
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    i think people with chronic pain find it hard to put a number on it or they dont realise how much pain they are in as they are sort of use to it. eg when i went for my ablation (burning nerve) to lower back for my chronic back pain they asked me to rate it out of 10. The day of the procedure before i had it done i would have rated it maybe a 2 out of 10. After the procedure and with local anaesthetic in there as well which gave me zero pain, i then would have said that my pain prior was much higher then a 2, it made me realise i was in alot more pain then i thought and this pain had a big impact on my energy levels too.
     
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  11. Xandoff

    Xandoff Michael

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    Northern Vermont
    I could tolerate this illness and function much better if it wasn't for the chronic pain I have. Brain fog seems pedestrian to me compared to chronic pain and what that does to the spirit and the brain. My chronic pain goes from my neck to the base of my spine. I have all the usual comorbid suspects, arthritis, spinal stenosis, sciatica and more. Perhaps categories could be grouped by what afflicts the individual the most.

    This is ME in a nutshell.........................................................

    From Brief Pain Inventory
    aching throbbing shooting stabbing gnawing pricking
    sharp tender burning exhausting tiring penetrating nagging numb miserable unbearable dull radiating squeezing cramping deep

    From Katrina Berne
     
  12. GracieJ

    GracieJ Senior Member

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    Utah
    Okay, must be brain fog... how the heck does this survey work, or has something changed? How do I take it or add to it or whatever?? Is this another ongoing project that needs attention?
     
  13. taniaaust1

    taniaaust1

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    Sth Australia
    I dont know if Im just missing it or not.. but I cant find period/menstational pain in all that pain stuff. Those who have ME tend to have more issues with that pain.

    Gracie .. I think its a project which needs attention some time.
     
  14. taniaaust1

    taniaaust1

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    Sth Australia
    Yes I can get pain anywhere with the ME. (thou I havent right now)

    Pain at its worst in the past 24 hours. - (headache 2 (on pain killers, period pain 4)
    Pain at its least in the past 24 hours. - 0
    Pain on the average. - 1 (ive varied from different pain degrees to no pain so its hard to average)
    Pain you have right now. - 0 (but Ive still probably got pain killers currently in my system, hence now no pain... all this question is showing is how good ones pain killers are working or not!!).


    0 1 2 3 4 5 6 7 8 9 10

    General activity - 0
    Mood - 2
    Walking ability -0
    Normal work - it interfered with my activities .. went to bed for a couple of hours as otherwise I would of started crashing in other ways. (dont know how to rate something which made me to to bed for 2 hrs)
    Relations with other people -1
    Sleep -0
    Enjoyment of life -2
    ..........

    This questionaire about how one has been in past 24 hrs is quite useless in my case... as every day Im soooo different. Different kinds of pain or no pain. Different degrees etc.
     
  15. Xandoff

    Xandoff Michael

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    Northern Vermont
    That is a great idea Cort. I think if people had this information in their profiles it could facilitate communication between us. Again, I think a general pain forum is needed on PR because such a large % of us deal with chronic pain. My humble opine!
     

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