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Old 09-26-2009, 12:35 AM
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default Pain in all forms seems to come with the territory?

Having had the 'joy' of having to go to the ER twice this summer? Trying to explain the CIDP possible muscle loss and pain .... I equate to those with severe burn victims. THAT is something docs can relate to-other than neuros. In my own case? It was IF the lower half of my body...while there? WAS DISSOLVED when trying to use it.
Those same docs would ask me about my 'pain levels'...I would bluntly state that I do NOT UNDER ANY CIRCUMSTANCES do those stupid 'happy-not happy faces'! Saying It's about a 6-8 on a good day? And now that bone from a fracture is almost sticking out of the skin? Well, it is no different. Thing is..thruout YOU HAVE TO BE CONSISTENT.
I've found that pain pills can help at times...but not the actual elimination of pain. They merely dull your mind so you don't care! In that same hospital, last time? I KNEW I must be in deep trouble when they debated about how much morpheine to give me. I didn't care on that stuff, but the other side effects kicked in and that created new problems [constipation of the major sorts]
Pain pills only cut the top of the sort of pains we experience. Sometimes 'getting by' is the best we can do? My view? As long as you can FEEL, there is hope! I still feel pain, tho I should not. I at times feel less pain than at other times.
While toxic neuropathy may be your issue? I would take a peek at this web site ...that Glenntaj or another good person found-it's a treasure.
http://neuromuscular.wustl.edu/naltbrain.html
Read and learn, learn the questions to ask.... Don't look for the cause, as it's not going to be simple, unless there is one heck of a distinct cause/effect aspect apparent. Look at the tests you might need to get diagnosed and then treated properly. I'd had a neuro say essentially: "it was all in my head' In my case, it was not - it was an autoimmune neuropathy and treatments are expensive but essential to daily functioning and pain relief. I am luckier than others tho, who for some reason do not benefit from some treaments.
Lastly? Being afraid, scared stupid and lots of other WHAT-IF's do crowd the mind? Do not let fear win! Learn, be smarter than your doc at times so's you ask those key questions or, tell those key bits of personal 'history' that get you diagnosed. What we have does require a good nutritional and vitamin regimen as Mrs D suggests. It HELPS. But all of this takes time, persistence, good eating and good treatments. Think of it as being struck by lightening? Only what's happened/happening is chemical. And, also? Body malfunctioning programming.
Testing is the process of 'elimination'. Keep at it and no one, please don't cry until the jury is back? Save your energies for finding out what all is going on...then figure out how best you can deal with it all. 's - j
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"Thanks for this!" says:
BonDon (09-26-2009), malawigirl08 (02-01-2013), sheila (09-26-2009)