How PN will progress..
 

I have a question that I need you guys to answer if you can...

I know that illnesses are different for each person but sometimes there does seem to be a common pattern that most illnesses take. I have asked my doctors if they can tell me what to expect with regard to how my PN will develop and they really don't give much of an answer.

Will you please let me know, if you can, what to expect of this illness as I want to be as prepared as I can for things to come.

My PN started with a bang in late May and even though I have some pain and burning it seems to be mind compared to many of you. I am on gabapentin 2400 mg daily), tramadol (100 mg as needed every 8 hrs), and amitriptyline, 50 mg at bedtime. I am transitioning from gabapentin to Lyrica and do seem to see a bit less burning and pain in my hands and legs. I am also trying to use the lidoderm patches but not having much luck yet.

My PN actually started in my hands and forearms first...during the early part of 2008, I would periodically have some burning in my right forearm and a sharp pain in the palm of my right hand. I use the mouse with my right hand so, having been diagnosed with carpel tunnel back in 2007, I assumed it had come back. During that same time, I would have these same symptoms in my left forearm, including numbness and tingling my left hand. I attributed the symptoms on my left side as possible heart trouble, blockage, etc. Since these symptoms were not terribly painful and didn't happen very often I decided to "check on it next week" and went on about my business.

The last of May 2008 the burning in the shinbone area of my right leg started like a fire. The burning in my left shin started about 3 days later. That progressed for 2 weeks until the burning in my right forearm and then my left formarm started. It seemed like once all the nerves had been burned out in my shins and forearms, the backs of my hands and tops of my feet started to burn. After about 3 miserable weeks of this I finally got to see the doc who started me on gabapentin and eventually some limited relief began to be seen.


Right now, although my shinbones still burn some, the majority of my burning is in forearms and palms of my hands. I do have a bit of pain in my feet but it is much less that that arms and hands. I seem to have the PN backwards...

Will this burning and pain progress until the point where I can't walk, can't work? So far, I have a dx of small fiber neuropathy...

Sorry for the long post, I'm just trying to find answers....

Wondering about the same thing
 

HI, I don't have answers for you but I sympathize with your issue - I too find that the drs are reluctant to say what will happen down the road, the most I have gotten is if I continue along the same lines and do not find successful treatment then I will have "problems' like foot drop, etc. Also, the fact that I am still relatively young means I have many more years to get worse.... I think they are reluctant to tell you bad news when they don't know for sure and everyone's case is different.

A few thoughts from what I read here. That some people feel better because they find a treatment that works for them. For ex the right med. I think it is Dan but he tells a great story though I know he still suffers but how he found the fetnyl patch and it gave him a better quality of life.
I am a little different then most here though many of us are but anyhow a lot has happened with my health and symptoms from the start of this. Some has gotten better and then new things have appeared. I tend to worry so much about what else can happen or what may get worse like you said about walking etc. I am really working and this is easier said then done but staying in the present and getting through each day in the best I can. To be as proactive in life and my health. When I have my surgery I am going to do biofeedback again which I think everyone could benefit from. It is really hard not to worry but I do feel for me all the anxiety and fear really takes away from the quality of life and in some ways I may have to accept certain things for the next 50 or 60 years. Oy. Hang in there and I hope you feel better

How PN progresses? For each of
 

us it is very very different! Even the most experienced of neuros can't have experienced all the neuro categories listed in this key sticky site's index:
http://neuromuscular.wustl.edu/alfindex.htm
Read it at your leisure and turn your brain into peanut butter!
Some neuropathies come on slowly and take decades to get diagnosed, others come on rapidly [my own did] and even then it took a heap of effort and over a year to get diagnosed...and I KNOW I was very very lucky!
Sometimes, for a few folks, things just go away. For others they get sicker and die. For the rest of us, we simply have to make the best of what resources are available to help us...be they meds, doctors, therapies, supplements or whatevers to get by.
Yes the first, foremost and greatest fear is IF things seem to be getting worse! I am not shy about calling my neuro when I'm sure such things are happening! I call 3 times a day until I either get an appt. or an answer from him! But then, I've been working with my neuro for over 4 years and he knows I'm not going to say 'the sky is falling!' unless something is really off kilter. Like you, I play/replay all what has happened to me before and after my onset and now, what might be logical in terms of 'setting' off new symptoms. That way the doc and I don't have to tip-toe around during the office visit and get down to business.
I HAVE had some areas of progress, and some set-backs. But I know what is helping the progress and what is causing those pesky/scary set-backs.
Understanding and learning as much as a non-technical person can about what happens to those nerves dying and re-growing is useful [to me, at least] when coping with any of those set-backs.
I wish I could say that at times the 'status quo' is a good thing? But, truly it is! The pains or numbness may change, but it's going to be there in various ways. Sometimes you won't notice any of these changes, they are usually subtle...but the good ones can and DO HAPPEN! I hope truly that this helps ease your fears to a degree. Hugs and hope! - j