for long time PN'ers. I've read that for some sufferers it can take 18-24 months for nerves to die off at which time much of the pain can be replaced w/ numbness. I also know you can still experience both based on my own symptoms and talking w/ other sufferers but my question relates to assessing the progression of PN.

Have any members of the group experienced any sort of reduction in pain as the PN progressed despite your best efforts (my situation now, i.e. the PN seems to be progressing despite everything I'm doing - my less than scientific assessment based solely on how I feel, no statistical analyses or control studies). Since I have a mixed sensorimotor polyneuropathy I know that both A and C fibers are involved w/ most of my problems from the C fibers.

Perhaps there is a better way to ask the ? but I'll start here.
Thanks in advance.

Alkymst

I've wondered this too. I missed two doses of Lyrica today. Family crisis looming large on the horizon. About mid afternoon when I realized that this might have happened, I checked my med box. Sure enough I had missed them. The reason I even thought to check the box is because my pain was off the roof. I don't remember the pain being this bad before I started taking the Lyrica. So I'm wondering if there is anyway to assess this besides the extensive tests?

I too thank you in advance.
Billye

I may be totally confused on your ? so bare with me. My pain has worsened over time. I have not had this issue well dx anyway for 2 years. I will say when I talked to my doc about things getting worse and this may be wrong but said sometimes things get bad then to see bigger improvement. Also I read that when nerves are regenerating its more painful along when muscles lengthen. Now for meds wouldn't it be better a gradual decrease to see? As for tests isn't there just maybe 1 or 2 you could repeat to see progression? Like the emg possibly? Feel better

with tricky answers?
The whole 'process' of nerves dying is still in what I feel are the 'baby' stages of exploration. Studies on nerve regeneration are far more primitive even.
In my case, my feeling is that some of my nerves are dying and others regenerating at the same time!
I also think that the extent of damage to the thousands plus of each nerve makes a difference as well. So, maybe there is no real answer.
As for nerves dying completely - I think someone like Kmeb chould answer more concisely about describing 'progress' or 'progression' of neuropathy[ies], as she has a total sensory deficit.
As with Silverlady...missing a dose of essential pain medications does open the door to new pains and I get very, very 'muzzy-brained'. But then these are drugs that work on/in the brain to block the pains.
Doctors ask me 'How do I feel?' I always answer 'As good as can be expected'. Should I ever experience a complete restoration of sensory function suddenly...I really think I would go into some sort of emotional shock! I have been compensating for what seems ever so long that I would be overcompensating as a result. It's sort of like watching a gyroscope [remember those?] always spinning and compensating in terms of my pain, where it happens and how it's happening.
That's the best I can explain it...Does it help? - j

Hi - in regards to the progression of nerve "death" - I honestly didnt realize how bad it was at first until too late (I dont know if they could have slowed it or not)....

My PN started noticeably to me overnight with my right hand and foot going completely tingling numb, felt like they were always asleep and I'd shake them to try to wake them up (thought I had pinched a nerve or something)... that eventulally led to no feeling at all - but during the period of the tingling feeling I was still working for several months - others starting noticing before I did actually that I seemed to be limping, walking tilted, and a co-worker who had spent a year in a head injury clinic asked me if I realized I was having problems with propeciation because he could tell by watching me I was having problems telling where my body was in space... then I started noticing I couldnt stand without holding on to something, for example I'd have to sit in a checkout line at a store cause I'd loose my balance and I'd just tell people I had an ear infection (I still had no idea what was going on - I had an HMO and they refused to send me to a neuro)... then I started getting injured, multiple burns and cuts to my arms, cuts on my lets, etc.. that I never noticed until a day or so later and realized I couldnt feel them... Six months after onset I was finally sent to a neuro - who did NCS that day and disagnosed mild sensory PN - which within a year progressed to complete sensory loss. That was 7 years ago, I've now got motor loss too - but at least theres still conduction there....

Curretly I do get constant numbness, aching, and tingling, but not severe pain from the PN like many do. I have pretty severe back and gut pain - other issues.....

So in regards to progression - I honestly did not realize the extent and severity until very well along.... and if they had let me see a neruo in a timely manner, I think outcome may have been different... I'm getting IVIG now - does give more energy and seems to be stopping progression of damage in my arms and helping balance some - a good thing....

Thanks for these answers. But,... it seems as if there are no answers. There is pain when it is healing and pain when it is dying, ...until it is dead. And like Dalek, I suspect a sudden return of regular sensory feelings would just be painful because it would not be something that the body is familiar with. I'm happy to report that I've caught up on the Lyrica dosage, and things are back to their dull roar. But at the same time, I'm very worried that things are getting worse.

It's just so hard for me to judge anymore because of the arthritis and osteoporosis issues. The sacral fractures have affected the nerves and I've found that a Lidoderm patch helps a little but still it feels as if I'm sitting on an electric wire that is live. This is nothing new for me, but it just seems worse. And my head feels a little like Dalek described..a gyroscope spinning in space. I no longer feel that I can walk without the walker or holding on to something. But there are times when I can. I just don't feel safe doing it because I'm worried that at some point I will fall.

I know Sjogren's is progressive, but how do you know when it's progressing when you are sero-negative? It's all just a big puzzle and I don't think there is an answer.

Billye