I'm wondering if there is a "scale" that has been used or could be used to give some kind of measured feedback. Kind of like QST measurements but geared toward measuring EM flares and pain.
Some example questions but I'm brainstorming now:
What is the base level of pain you experience during the day without a flare?
How many hours a day are you without pain?
How many flares do you experience or can you experience?
How long can you be on your feet doing normal activity before you start to experience a flare?
What level of flare pain do you normally experience?
What skin temperature ranges are your feet comfortable with?
What temperature does you feet feel "to cold", what ranges "to hot and a flare happens".
How long does it take to cool your feet to reduce a flare?
How long and what temperature water do you use to cool a flare or relieve pain? How long to "almost freeze your feet" to have zero pain?
Basically measurements and questions like the sample questions I'm throwing out above. What would be a good set of questions and measurements to give a sense of the scope of EM pain and level of chronic pain you experience.
As an example some people can be on their feet for hours, and maybe after ten hours they will start to have feet that hurt. They are younger people with no foot problems, typically. Some with neuropathy from diabetes might be able to stand for an hour or two. But a four hour short shift at a part time job will cause pain flares. So they may have a 2 hour tolerance to standing and occasional flares. And what is their pain level during a flare?
I might have a bit of a hot flare from a fungus infection as an athelete and have temperature from a fungal infection but no pain at all, as another example. Zero EM symptoms, but heat.
My mom as an extreme example could have pain within two minutes and after five minutes of standing and walking a short distance might have a 10 level pain flare, that could last for three hours or more. With only chilling and pills relieving it and bringing it back down to a base pain level of 7. She might get total relief only from complete chilling in cold water of 55 degrees or less (but not freezing water), after ten or twenty minutes. She might not get relief from that and require 45 degree water for 15 minutes. It's impossible to know and rate the level of pain unless we have some kind of pain scale that is universal and somehow used by EM suffering patients.
I think we need to have some kind of accepted scale and perhaps that can be adapted as some kind of way to quantitatively measure EM symptoms and levels of EM that different patients are dealing with.
Any thoughts or feedback is appreciated?
A bit along those lines. I have been asked by the foot doctor and others if I would care to do more measurements about water chilling and immersion and measure how much water is used and how cold it is before and after mom chills her feet. And how my feet would react to the same water immersion. I believe mom can handle two to three times the chilling that a normal person would be able to handle. But of course I can't prove that unless I make measurements and tests of some kind.