I can certainly appreciate your decision to take the Dilaudid, which I had occasion to take a year ago. Didn't like that one as well as Demoral personally. I can appreciate your concerns regarding the junkie remark. I personally don't worry about that stigma simply because nobody else lives my life. Others have no idea what I endure with this affliction (or what you/others have endured sir) and I don't need their approval frankly.
I have a handicap placard which is limited help. Walking is hard and getting harder, no matter how much or little and no matter how far or near and always triggers severe pain. I take Vicodin and neurontin (Gab) among other things. Gained some limited benefit when I started the Vicodin - finally. The drugs I do take cause me to be very drowsy at the wrong times and very awake at the wrong times (as I'm sure you're aware). I do get about 6 - 8 hours of relief on average from the meds. I refused to take the anti-depressant (Cimbala I think), despite paying for the prescription, after reading the warnings when I had issues with it. I figured I would be better off with nothing or something else. I won't take the anti-depressants. 3 months ago I tried the epidurals. Big mistake (for me personally). I am maxed on the neurontin but the doc had no problem with giving me the vicidin which has offered some limited relief. The Neuropathy just gets worse for me though. I went to physical therapy for 3 months. 3 times a week, 2-3 hours daily. No marked improvement.
In the end I agree with you and take the same position as your remark when you said, "I do love life but refuse to go back to the constant pain".
Right now I get some minor/moderate relief and on my worst days... no relief at all even from all of these pills. I also have severe numbness - no sensory in my feet - except the pain. I also have marked weakness in one foot which they think is a different problem.
I can never tell how bad my neuropathy will get during any given day or how dramatically or how frequently it will affect me on that day or group of days. I used to keep records of the pain issues because at the time, I had no idea what was happening to me. It was severely disabling and was so bad it brought me to tears. I'm a 49 yo man.
Both feet and shins are affected regularly. It is extremely severe when it does hit me. I get several distinct individual pain types of sensations and pain severity degrees. Unfortunately, it's indiscriminate and affects me when I drive just as easily as when I walk. I used to have to pull over to the side to deal with it because it was so severe I instinctively grabbed it in an effort to alleviate whatever the problem was. I have since quit driving because I also cannot feel my feet against the pedals anymore either. This makes city driving a fairly dangerous proposition for me.
I call them 'pain events' for the purposes of communicating with doctors, etc. It's not like this affects me every moment, minute by minute, of every day, thank God!!! I don't think anyone could live through that. However, the number of events I have on a day has a dramatic effect on my ability to do things and that's the thing... That's what the meds have helped with mostly - the number of controlled events and numbing the more moderate level 5 events. Severity for me is still horrible - often a 10.
I do not go anywhere without at least carrying my folding cane - when/if I go anywhere. I just don't know when I will need it. Truth is, I don't go anywhere anymore and haven't for quite a while. I worry - worry about driving alone, afraid of falling, afraid of having an "unmanageable" pain event in a public place and/or being forced into an ambulance (which can happen) because someone who cared sees me go down and cared to call 911. I usually only go out now when my wife accompanies me right now, just to be sure.