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

In answer to Alkymst’s question, as a PN sufferer for 15 years I can only say that the pain in both of my numb feet is getting progressively worse. In the last 3 months it has deteriorated at an alarming rate and if it does not stop I will soon have to give up everything that involves my feet. I can only walk a few yards at a time, I try never to stand and eventually driving will become impossible. I take 3600mg of Neurontin and 40mg of Oxycodone every day to absolutely no effect at all. I have also seen 4 neurologists and a wealth of doctors who take my money and say have a nice day. My experience may not be typical of the majority but as I said in a previous posting, no amount of money can buy me even one iota of pain relief. Only sleep gives me some respite and even that is now not offering me so much as in the past.

Yes PN in cases like mine is progressive. How it or I will end only God knows. In the meantime I just fight the pain each day – I am not brave, I simply have no choice.

Tony

I know what you mean about missing a dose. I stay on my Tramadol and my Lyrica, and I almost convince myself that I don't even have nerve damage. The pain is minimal, and I try to convince myself that I am on the way to better feet. Miss a dose or two....reality comes back.....fast.

You know I was just thinking after the comment about seeing different docs and just getting sent away. It seems like even the neurologists don't have many answers for a lot of us. That is what is frustrating.I had more I don't know answers from the 2 neuro's I saw. The not knowing what happens next or day to day. I really hope they do more researching on these issues.
Adastra I don't think you give yourself enough credit. To me you are brave as you continue to fight. Hope can help you through too though I know easier said then done cause I sometimes loose mine.
The med issue like Lyrica so on do they ever get stopped and the pain doesn't return? I know its a med that stops the brain from sensing pain, correct? So what I don't get is when the docs tell me I shouldn't have to be on it forever does the nerve heal by then or the brain forgets? Sorry if its stupid ?
Take care.

I feel almost word for word like you. It the pain get's worst.
I'm on the same amount of Neurotin but on Morphine sr which she
upped yesterday. Besides the trip to Mayo,i have stayed with her. I guess
because she listens to me,i'm not rushed out the door,if she doesn't
know the answer to my question,she tries to find it and calls me later
in the day. If we all feel different i guess it can be confusing for them.
Also i have missed my Neurotin like Billye has done her Meds. and i must
need it because i sit in a daze and wonder why the pain is worst. We seem
to be different from some and so much like others. My odest the last time
he was home told me i looked great but was walking just like Grandma
use to. And lately my hands hurt so much there staring to shake,it's
so hard to hold on to something and turn pages ect. At 5 this morning
i was still up on the conputer,and i saw Jarrett was up and not sleeping
to. But i was getting so sleeply finally i was afraid i would fall asleep and hit
my head on the conputer again. And only here i would admit i've done
that. And i get dizzy laying down,but that could be innter ear. Sue