and disable, I have been on 80 mgs of oxycotin 80 mgs 3 x a day and anther 20 for emergencies, due to the fact I have a type of neuopathic pain pain the even most medication for neurapathy pain won't work, very few dr's now how to treat this illness, and i When I was in the hospital I was so distraught that I don't remember letting my pain doc go. and hiring a pain doc head of the pain program. well I only saw hi 1 time and he wund up leaving due to the fact they found out he was doing cocain,,, my doc won't tae me back and has left me hi and dry, and my primary care said she would take over till I found a new doc. In the mean time I am at the pain clinic where he was working, and nor they are trying to te everyone off pain meds all du to this one doc and my primary care decided not to help me. So I am working on 15 mgs a day on percocet and 30 mgs a dy 2 times a day on ms contin., I only wish I had this book handy when I saw my pain doc last, however i don't think it would make much difference to them anyway. It happens to state in my book I have call "An Overview For The Lay Person." Under pain it states that in over 1/2 of the diagnosed patients pain can be quite troublesome and deserves special attention. Pain by definition is a noxiouse or unpleasant sensation, and can be a challeging problem, in GBS,for several reasons They may be skeptical about a patients complaint of pain and reluctant to believe it it is present, especially
it it does not respond to non narcotic pain medication given rise to role for the use of potentially addicting narcotic pain medication. , as well as many neuropathy medications as well do not work as ones neurologist would think.
It's also felt in the low back, buttocks and thighs and sometime between the shoulder and/or the at the arms.It can be achey crampy or stab-like,or sometimes describes as feeling like a charlie horse with deep muscular pain quality It also goes on etc.
stating even medications used for neuropathic pain are uneventful in trying to treat this. I swear I thought that was me writing the book. This rare illness I bet I can educate more docs on than them trying to educate me!

OK now I must be on 14 different meds from anti depressants to trying avery and all neuropathic pain med anxiety meds seizure meds on and on .
My question, this is costing us so much $.even though we have excellent insurance, we are still forking out an awful lot of Money for meds.
my question is has anyone ever used those online pharmacy's where you can get like 3 months of meds at a time. there is one med my insurance won't cover which is almost $850. and just so happen thats one of the ones that I cannot o off or I won't be here! I see it on some of those sites for so much less can anyone help me on this.
I am going to star weeding through many of these one at a time and reduce one meds little at a time until I am off to se if it makes a difference. I know after being one many of these for over 30 yrs I cannot just stop them.
I also saw a few others that would be cheaper also.
HELP all
worst off now I cannot get the pain meds I really need to help me!
I can't win for the life of me.
thanks all and as always
have a pain free day