Saturday, 9 February 2013

Update 24 - Survey Results Part 11

This is the penultimate set of results of my survey (based on the 300 completed originally).  These are about where nerve pain is and how tired people get:

This graph tends to follow the trend of all the other "feelings" charts, whereby the extremities are most affected with the feet/toes being marginally ahead of the hands and fingers.  I presume the toes are slightly less than the feet because, unlike the fingers which are the most used parts of the body, the toes are not used - well that certainly applies to me (no pencil picking up ever again!).  We all know immediately if our fingers have issues.

By comparing GBS & CIDP the relationships between the areas is more or less the same, but the numbers are higher with CIDP, which is to be expected, as people (me included) still get pain.

Comparing men and women, as with other charts, seems to bear out the theory that men complain less?  Though why is it the one area that men complained more was around the stomach?? (must be to do with food!)

This next part is concerned with how tired people get:

As you can see the vast majority do!  From a statistical viewpoint, noting the age of the people filling in the survey, would they not be getting more tired anyway? Maybe I should look into this more closely??

From a GBS versus CIDP viewpoint:

It is clear there is a difference and as a person with CIDP, I can agree that I am exhausted at the end of each and every day - and really don't know where the energy has gone - when comparing myself to before the illness .

My follow on question to the GBS sufferers (and I suppose to CIDP as well) is "Is the pain and tiredness still there?"


  1. Dear Drew,

    Again: thank you very much for the work you have done.

    Some possible explanations for the results above:

    Perhaps the people who responded to your survey are not representative for the entire population of GBS / CIDP patients.

    Second: 'a well recovery' means (in Europe) that the patient is no longer in a life threatening situation, can take a shower without aid etcetera. It does not mean the patient can go back to work.

    Kind regards,

    Willem Geldof

    1. Sir - you are entirely correct in what you state, as with all surveys, the tone and phrasing of the question, against what the responder thinks it means can influence the answers greatly.Also I have probably been answered by people who have recovered, more than people still with the illness, I just don't know. In my opinion, the numbers represent a decent cohort and conclusions can be fairly made and justified on this basis.

      I have gone back to work, but struggle to cope and have to be very strict with how much "work" and "rest" I have. If I overdo it, then I am literally unable to do anything until my batteries recharge!