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Poll: Which symptoms do you have on a regular basis?

Discussion in 'General Symptoms' started by Jesse2233, Nov 28, 2017.

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Poll - Which symptoms do you have on a regular basis?

  1. Physical and mental fatigue

    76 vote(s)
    91.6%
  2. Post exertional malaise (PEM)

    69 vote(s)
    83.1%
  3. Unrefreshing sleep

    68 vote(s)
    81.9%
  4. Pain

    46 vote(s)
    55.4%
  5. Impairment of concentration / short-term memory

    66 vote(s)
    79.5%
  6. Difficulty with word retrieval

    52 vote(s)
    62.7%
  7. Inability to focus vision

    31 vote(s)
    37.3%
  8. Muscle weakness

    45 vote(s)
    54.2%
  9. Involuntary muscle twitching

    24 vote(s)
    28.9%
  10. Hypersensitivity to noise and light

    48 vote(s)
    57.8%
  11. Intolerance of emotional stress

    57 vote(s)
    68.7%
  12. Postural orthostatic tachycardia syndrome (POTS)

    30 vote(s)
    36.1%
  13. Neurally mediated hypotension (NMH)

    10 vote(s)
    12.0%
  14. Light-headedness

    31 vote(s)
    37.3%
  15. Nausea and irritable bowel syndrome

    36 vote(s)
    43.4%
  16. Urinary frequency and bladder dysfunction

    27 vote(s)
    32.5%
  17. Exertional breathlessness

    35 vote(s)
    42.2%
  18. Intolerance of heat and cold

    46 vote(s)
    55.4%
  19. Allergies to certain foods or chemicals

    36 vote(s)
    43.4%
  20. Flu like symptoms (sore throat / tender lymph nodes / recurrent fever / general malaise)

    44 vote(s)
    53.0%
Multiple votes are allowed.
  1. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,712
    Likes:
    4,295
    Southern California
    Add any symptoms not listed in comments below.

    I've not seen a similar poll posted before, please let me know if there has been.

    ------------------

    This poll can hopefully help us:
    • Understand how well this forum matches Canadian Consensus diagnostic criteria
    • Gain greater appreciation for the spectrum of symptoms present
    • See how prevalent certain symptoms are
    Co-Morbid Entities not listed on poll:
    • Fibromyalgia Syndrome (FMS)
    • Myofascial Pain Syndrome (MPS)
    • Temporomandibular Joint Syndrome (TMJ)
    • Irritable Bowel Syndrome (IBS)
    • Interstitial Cystitis
    • Irritable Bladder Syndrome
    • Raynaud’s Phenomenon
    • Prolapsed Mitral Valve
    • Depression
    • Migraine
    • Multiple Chemical Sensitivities (MCS)
    • Hashimoto’s thyroiditis
    • Sicca Syndrome
     
    Dechi, lior, fingers and 5 others like this.
  2. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,712
    Likes:
    4,295
    Southern California
    Forgot to add chest pain, one of my own most annoying symptoms :bang-head:
     
    sb4, Dechi, ukxmrv and 2 others like this.
  3. TreePerson

    TreePerson Senior Member

    Messages:
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    1,040
    U.K.
    Altered skin sensation. E.g. tingling numbness crawling sensations.
     
    Dechi, ukxmrv and Diwi9 like this.
  4. Diwi9

    Diwi9 Senior Member

    Messages:
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    USA
    I have cold intolerance, but one could also include temperature dysregulation as a distinct symptom. I can be freezing in a warm room at one point, and over-heating at the same temperature a few minutes later. I installed a wireless function on my thermostat so that I can change the thermostat with my iPhone from bed, it has been a lifesaver during crashes.

    Pain is difficult symptom category. I have intermittent joint pain in my hands and back. Some pain feels like connective tissue flares (hands), while back pain often feels like muscle spasms (distinct from muscle twitching).
     
  5. E.man

    E.man

    Messages:
    82
    Likes:
    134
    Bega Valley , Australia
    Migraine
     
    Dechi likes this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
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    Likes:
    8,196
    australia (brisbane)
    OMG, sleep. Consistent quality sleep and the ability to actually nap would help everything.

    If i have a crash/viral reactivation/shingles episode, what ive noticed is that prior to this i will have a few nights of awful insomnia thats drug resistant and say followed by rotten mostly one sided headaches and then a shingles rash comes out.

    Proper sleep just has recovery abilities that cant be duplicated . If you gave someone an 8 hrs window every night to sleep but every 15 to 30min you poke them with a big stick, most would be a mess after 2 nights. So after years of this its know wonder mecfser fall apart. I think in the above scenario there would be plenty of measurable effects from inflammatory cytokines off the chart, hormonal dysfunctions and a big list of symptoms.
     
  7. TreePerson

    TreePerson Senior Member

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    U.K.
    That’s interesting @heapsreal. I have also found that any kind of serious immune activation or virus fighting is preceded by several days of intransigent insomnia. A different kind of insomnia to the regular kind.
     
    Jessie 107 likes this.
  8. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,532
    Likes:
    24,614
    USA
    I answered the poll with the symptoms that I had on a daily basis for many years even though some of those symptoms are now in remission:

    POTS, exertional breathlessness (in my case more like orthostatic/standing SOB), pain, muscle weakness, and allergies to certain foods and chemicals (and like you, Jesse, I would have checked chest pain if it was one of the options).
     
  9. jpcv

    jpcv Senior Member

    Messages:
    202
    Likes:
    420
    SE coast, Brazil
    Chest pain (muscular pain in the chest wall ) and fatigue
     
  10. Silencio

    Silencio Senior Member

    Messages:
    163
    Likes:
    578
    That was my first major symptom too but it went away when I started to rest aggressively and pace. Now I only get it if I really overdo it as part of a bad PEM. If I didn’t have major daily support from caregiver, chest wall tightness and aching would be one of my major symptoms.

    Headaches are one of my bad symptoms not on list.
     
    jpcv likes this.
  11. PatJ

    PatJ far and free I gaze

    Messages:
    1,953
    Likes:
    5,249
    Canada
    I answered based on the symptoms I currently experience but there are symptoms that I no longer experience due to time (illness duration), strict pacing, and symptom management:
    * Flu-like symptoms - I used to get flu-like symptoms for 1-3 hours every day or two. After roughly 3-4 years those symptoms disappeared. I haven't had a 'real' flu since 2004 and haven't had a cold since 2007.

    * Muscle twitching - I used to get this in my thighs after going for a walk of at least a mile or so. Now that I'm housebound I can't walk enough to find out if I still have this symptom.

    * Chest pain - I used to get this a lot, along with heart palpitations and skipped beats. It even got so bad for a few months that I sometimes had left arm numbness and jaw tightness which are signs of serious heart problems. A 24-hour Holter monitor didn't find any problems. These symptoms went away once I started taking supplements such as high quality methylB12 and methylfolate.

    * General pain - I can get coat hanger pain if I push too much but staying within my energy envelope leaves me pain free most of the time. An exception to this is occasional discomfort or pain in the left side of my colon and under my left ribs.

    * Digestive pain - I used to get a lot of stomach discomfort, especially after eating, but since I've been taking Betaine HCL with Pepsin I no longer have abdominal discomfort or pain.

    * Fatigue after eating - eating very small, frequent meals avoids the blood pressure drop that leads to extreme fatigue and brain fog after eating.

    * Headache and nausea (and worse balance) - this can occur if I push too much mentally or physically.

    * Severe brain fog - I still have brain fog but used to get such severe brain fog that I could barely function. It turned out that I have blood sugar drops throughout the day (but not at night). Eating ten small meals during the day keeps my blood sugar stable. I also get up at 4am so that I can eat by 4:30am when my blood sugar first starts to drop.

    Other symptoms that aren't listed on the poll:
    * Low or fluctuating body temperature - I didn't even know I had this until I read about it, checked, and found that my body temperature fluctuates between 36.2 and 36.8 throughout the day.

    * Heart rate that reduces with exertion - I've tested this by pacing back and forth a few times quickly, while wearing a pulse-oximeter, and found that my heart rate reduces with exercise. It's a symptom that I read about in the CCC or ICC. Because my PEM threshold is so low, I can't exercise much beyond pacing a few times in my house then resting while lying down for 80 minutes, so I can't test this with more strenous exercise.
     
    Gingergrrl likes this.
  12. voner

    voner Senior Member

    Messages:
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    852
    @Jesse2233,

    I don't think nausea and irritable bowel syndrome necessarily go hand-in-hand. You might change the wording to nausea or irritable bowel syndrome or separate them out.
     
  13. MartinDH

    MartinDH Senior Member

    Messages:
    105
    Likes:
    240
    I think this should get a sticky!
     
    ljimbo423 and Gingergrrl like this.
  14. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,333
    Likes:
    4,407
    London
    Or just "stomach and bowel" symptoms maybe?
     
  15. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,388
    Likes:
    21,553
    Albuquerque
    How would you characterize your chest pain? Some doctors suggest that it is tightness in the chest wall muscles, patients sometimes report a sort of "emptiness" in the chest when close to the beginning of a crash, others are concerned that they might have actual heart issues. To me it is not clear what is going on?
     
  16. Alexi

    Alexi

    Messages:
    61
    Likes:
    18
    Chest pain, breathlessness, anxiety, gut and bowel issues
     
  17. Wishful

    Wishful Senior Member

    Messages:
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    331
    What's your definition of 'unrefreshing sleep'? ME/CFS didn't alter my sleep patterns, but I do have 'fatigue that isn't affected by sleep'. This confusing diagnostic symptom is one of the reasons why I didn't realize I had ME/CFS for so long: I couldn't include that as one of the 'four of eight' symptoms, because my sleep hadn't suddenly become 'unrefreshing'.

    Also, your 'flu-like symptoms' category seems overly inclusive. I do get elevated temperature (pretty much daily) and general malaise, but no sore throat or tender lymph nodes.
     
  18. TreePerson

    TreePerson Senior Member

    Messages:
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    Likes:
    1,040
    U.K.
    It would be interesting to find out if the symptoms fall into any kind of group patterns. So for example large numbers, maybe most, people suffer from PEM but only about half that amount have POTS or immune symptoms or allergies. I am wondering if POTS people are more likely to also be in the allergy group. Or the immune people in the temperature intolerance group and so on.
     
    Gingergrrl likes this.
  19. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,712
    Likes:
    4,295
    Southern California
    Thanks for the feedback on poll options, unfortunately I can’t change them once the poll is live
     
    voner likes this.
  20. fingers

    fingers Senior Member

    Messages:
    390
    Likes:
    264
    SW Endland
    This is a good shot...well done.

    However, I do despair that physical and mental fatigue is top of the ...er, league (gonna start a rap!)
    That could be absolutely any illness you want to choose, or even a healthy person!
    I vote to remove that option.
    Anyone?
    It causes us so many problems...even the name of the illness.
     

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