Thank you for your reply, I know it's difficult to describe just how it is - I have heaviness in the legs like they are filled with lead and the pain runs right down through the centre core all the way to the feet....Codeine or Oramorph sometimes gives a little relief at the cost of being in a dazed zombie state or the dreaded constipation/compaction takes over and then the sheer act of trying to start and complete a bowel movement is almost laughable in the antics that I have to get up to, it takes a strong toilet seat I can tell you....just sayin!!.
I seems a contradiction in terms when you can have numb legs but still feel pain...this is the weirdest of syndromes and it knows no bounds.......I have given up trying to tell people just how it is and as for Doctors.....they just don't know what we feel...24/7 pain pain pain...don't get me wrong, I love life and would love to be mobile again but I am still here so best get on with it....I use an electric wheelchair and a mobility scooter to get around with and they are great for giving back your freedom.
Pity over this site, it used to be the best there was with loads of great people, a sort of internet family all rootin for one another, sadly....long gone now, there seems to be just ejenn & me left now....the old school!! LoL,
Great talking with you Joy...take care and my prayers will go to you as well, especially in November, you need to beat this thing.