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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

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

  • Physical and mental fatigue

    Votes: 92 90.2%
  • Post exertional malaise (PEM)

    Votes: 82 80.4%
  • Unrefreshing sleep

    Votes: 84 82.4%
  • Pain

    Votes: 55 53.9%
  • Impairment of concentration / short-term memory

    Votes: 77 75.5%
  • Difficulty with word retrieval

    Votes: 62 60.8%
  • Inability to focus vision

    Votes: 38 37.3%
  • Muscle weakness

    Votes: 55 53.9%
  • Involuntary muscle twitching

    Votes: 33 32.4%
  • Hypersensitivity to noise and light

    Votes: 55 53.9%
  • Intolerance of emotional stress

    Votes: 69 67.6%
  • Postural orthostatic tachycardia syndrome (POTS)

    Votes: 35 34.3%
  • Neurally mediated hypotension (NMH)

    Votes: 11 10.8%
  • Light-headedness

    Votes: 40 39.2%
  • Nausea and irritable bowel syndrome

    Votes: 45 44.1%
  • Urinary frequency and bladder dysfunction

    Votes: 35 34.3%
  • Exertional breathlessness

    Votes: 44 43.1%
  • Intolerance of heat and cold

    Votes: 56 54.9%
  • Allergies to certain foods or chemicals

    Votes: 42 41.2%
  • Flu like symptoms (sore throat / tender lymph nodes / recurrent fever / general malaise)

    Votes: 53 52.0%

  • Total voters


Senior Member
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


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).


iherb 10% discount code OPA989,
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.


Senior Member
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.


Senior Member
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).


Chest pain (muscular pain in the chest wall ) and fatigue
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.


Forum Support Assistant
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.


Senior Member

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.


Moderation Resource Albuquerque
Forgot to add chest pain, one of my own most annoying symptoms :bang-head:
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?


Senior Member
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.


Senior Member
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.


Senior Member
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.
It causes us so many problems...even the name of the illness.