Mike Foxworth's preliminary take on our current survey results:
A sample of 16 is small, but interesting trends seem apparent.
PAIN makes life hell. There is plenty of pain apparent at our our PN Support group meetings AND in these responses. But these results suggest that PN related MUSCLE WEAKNESS, with its associated movement limitations and physical danger, are of greater concern to the people who've taken this survey. Likewise, the respondents seem to have participated more in muscle related treatments than "pain relief" treatments.
The sample is small. If the above summary of our results is true, why?
So far, most of the respondents are members of our support group, suggesting (a) they're active enough to DO something and (b) their condition does not prevent them from doing it.
Muscle weakness disables and kills, while pain makes life miserable but MAY be less dangerous
Pain treatments are (a) expensive, don't work well & have side effects and (b) Reek of "snake oil".
Exercise is relatively cheap, feels good, might work & have few side effects.
We must be careful not to generalize. The sample is small and not random. It may be too "self-selected" to reflect the general population of PN patients.
Or maybe I have my own bias and I'm all wrong. I hope not. Regardless, I am willing to keep working on it.