[JonnyJ]

Hi,

I just got diagnosed with PN by an EMG after a several months of neurological symptoms - tingling and prickling in the hands and feet (mainly soles and palms), weird crawling sensations, occasional sharp stabbing pains, and intermittent weakness. The doc is searching for potential causes now but I have none of the usual risk factors, and he even told me it's likely that the eventual diagnosis will be idiopathic.

To be honest the symptoms are still fairly mild and intermittent. My symptoms all came on within a few weeks and have been fairly stable since. However the knowledge that PN is generally lifelong progressive, and I have a long life ahead of me (I'm only 27), scares the hell out of me about my future.

I know each case of PN is different and no one can tell me how my PN will progress, but I've got a few general questions:

(1) I've read some people say it gets better and easier with time, but how can that be if the symptoms typically get progressively worse over time? Or is it that you just learn to live with it better? Still hard to believe if the physical symptoms tend to worsen.

(2) Does progression always reach an end state of severe pain and disability that seems to be just about every case I read on here? I've read studies that estimate the prevalence of PN to be anywhere between 2 - 8% of the general population and 30+ % of diabetics. Those are extremely high numbers. The vast majority must be functioning well with PN, right?

(3) Power of attitude - I keep seeing everyone say this, and I know it to be true. I'm of the anxious type though, hence the worrying about my future even though the PN is so minor at the moment. I'm not really sure what I'm asking here, but just how do you deal with the mental stress of having a chronic and potentially debilitating illness? I've had clinical depression in the past, no episodes for several years, but I can feel myself slipping towards that again as I worry about my potentially very dark future...

[Ragtop262]

Jonny J:
Other than I'm about 25 years older than you - my story is pretty similar, and you are where I was about a year ago.

As you read the stories here, remember that many of the people who are long term posters are those who have pretty severe problems. There are certain forms of PN that are progressive and disabling. Others can cause severe pain. But this is not the case for everyone. In my case, I started out with twitching, then cramping, all kinds of strange sensations, then moving on to pain in my feet. This all developed over a few months, and I assumed the worst (just like you probably are now).

Well, after about 6 months, my symptoms stabilized and now have reduced to some extent. I would classify my current condition as more of an annoyance than a disability. No one can say for sure what will happen to me (or to you) as time goes on. But here are my suggestions:

1. Work with the doctors to find a cause and treat it if possible (although the cause remains unknown in many cases).

2. Keep your body and mind as healthy as possible - to give your nerves the best possible environment to heal. This includes improving your diet, taking supplements that support nerve health, get as much exercise as your condition allows, and reduce stress and anxiety as much as possible.

3. If your pain gets bad, work with your doctor to find medication(s) that will help.

If you do these things, you may very well see improvements - or at the very least slow down the progress. Over time, you will adapt as necessary - and find ways of coping with things you probably can't imagine you could cope with now.

[zkrp01]

Originally Posted by JonnyJ

Hi,

I just got diagnosed with PN by an EMG after a several months of neurological symptoms - tingling and prickling in the hands and feet (mainly soles and palms), weird crawling sensations, occasional sharp stabbing pains, and intermittent weakness. The doc is searching for potential causes now but I have none of the usual risk factors, and he even told me it's likely that the eventual diagnosis will be idiopathic.

To be honest the symptoms are still fairly mild and intermittent. My symptoms all came on within a few weeks and have been fairly stable since. However the knowledge that PN is generally lifelong progressive, and I have a long life ahead of me (I'm only 27), scares the hell out of me about my future.

I know each case of PN is different and no one can tell me how my PN will progress, but I've got a few general questions:

(1) I've read some people say it gets better and easier with time, but how can that be if the symptoms typically get progressively worse over time? Or is it that you just learn to live with it better? Still hard to believe if the physical symptoms tend to worsen.

(2) Does progression always reach an end state of severe pain and disability that seems to be just about every case I read on here? I've read studies that estimate the prevalence of PN to be anywhere between 2 - 8% of the general population and 30+ % of diabetics. Those are extremely high numbers. The vast majority must be functioning well with PN, right?

(3) Power of attitude - I keep seeing everyone say this, and I know it to be true. I'm of the anxious type though, hence the worrying about my future even though the PN is so minor at the moment. I'm not really sure what I'm asking here, but just how do you deal with the mental stress of having a chronic and potentially debilitating illness? I've had clinical depression in the past, no episodes for several years, but I can feel myself slipping towards that again as I worry about my potentially very dark future...

Progressive is in the diagnosis to allow for worsening, it is not a forgone conclusion. My legs are better and the pain is low enough for no pain pills. I feel that a person gets used to the symptoms along with any improvement. I used to use a walker but I free walk now. I cannot sprint but that is OK. I am glad to have reached a stability after almost three years. The sense of loss was a big deal for me and you are going to have to view this as an inconvienience if you can keep it that small in your mind. Anxiety feeds symptoms as does stress and worry. My best weapon was to see others in worse shape and to be thankful. Ragtop makes good points about nitrition, stress and we all wish to help so keep asking questions,Good Luck, Ken in Texas.

[Neuroproblem]

Originally Posted by JonnyJ

Hi,

I just got diagnosed with PN by an EMG after a several months of neurological symptoms - tingling and prickling in the hands and feet (mainly soles and palms), weird crawling sensations, occasional sharp stabbing pains, and intermittent weakness. The doc is searching for potential causes now but I have none of the usual risk factors, and he even told me it's likely that the eventual diagnosis will be idiopathic.

To be honest the symptoms are still fairly mild and intermittent. My symptoms all came on within a few weeks and have been fairly stable since. However the knowledge that PN is generally lifelong progressive, and I have a long life ahead of me (I'm only 27), scares the hell out of me about my future.

I know each case of PN is different and no one can tell me how my PN will progress, but I've got a few general questions:

(1) I've read some people say it gets better and easier with time, but how can that be if the symptoms typically get progressively worse over time? Or is it that you just learn to live with it better? Still hard to believe if the physical symptoms tend to worsen.

(2) Does progression always reach an end state of severe pain and disability that seems to be just about every case I read on here? I've read studies that estimate the prevalence of PN to be anywhere between 2 - 8% of the general population and 30+ % of diabetics. Those are extremely high numbers. The vast majority must be functioning well with PN, right?

(3) Power of attitude - I keep seeing everyone say this, and I know it to be true. I'm of the anxious type though, hence the worrying about my future even though the PN is so minor at the moment. I'm not really sure what I'm asking here, but just how do you deal with the mental stress of having a chronic and potentially debilitating illness? I've had clinical depression in the past, no episodes for several years, but I can feel myself slipping towards that again as I worry about my potentially very dark future...

For some it may get better some may get worst, it really the root cause of the PN. pN IS only a symptom of some other disease.

[janieg]

Ragtop summed it up very well.

I'm two years into this, and am better than I was when it first started. I'm never symptom-free and I occasionally have flares, but I don't consider it a disability by any stretch of the imagination. An annoyance, yes.

Anxiety and stress makes my symptoms 10 times worse. Doing whatever you can to help with that will go a long way in how you feel. I still haven't figured out how to deal with the stress, but at least my initial anxiety when I developed the condition has subsided, and I'm sure that's a big part of my improvement.

And do watch your diet. Try to cut back on sugar and processed food as you can. Neither does your body any good, and if you have "silent" glucose issues, they could be adding insult to injury.

[JonnyJ]

Thanks for the replies; it's good to know that not all cases end in severe pain and disability, so I know I need to focus on just today and not keep worrying about what the future may be.

Is it common for symptoms to be intermittent? And I mean very intermittent: my symptoms are there for a few hours at a time, but I also have hours and occasionally several days in a row with almost no symptoms whatsoever. They always return though, but it's been like this since the beginning.

I'm trying to figure out if there is a pattern in these symptom-free periods (ie. diet, stress level, etc.) to see if there's anything I can do to control the symptoms. Anyone has experience similarly intermittent symptoms? Or are most of your symptoms fairly constant?

[LouLou1978]

Originally Posted by JonnyJ

Thanks for the replies; it's good to know that not all cases end in severe pain and disability, so I know I need to focus on just today and not keep worrying about what the future may be.

Is it common for symptoms to be intermittent? And I mean very intermittent: my symptoms are there for a few hours at a time, but I also have hours and occasionally several days in a row with almost no symptoms whatsoever. They always return though, but it's been like this since the beginning.

I'm trying to figure out if there is a pattern in these symptom-free periods (ie. diet, stress level, etc.) to see if there's anything I can do to control the symptoms. Anyone has experience similarly intermittent symptoms? Or are most of your symptoms fairly constant?

Hi there, My symptoms were intermittent to start with, mine then spread quite quickly all over my body. I knew there were problems with the nerves before the pain as I got like a rain drop feel, and other weird symptoms. Stress played a big part in my symptoms developing. Now, I am nearly off the meds and don't have any pain. My strange sensations started at the end of 2012, I was 35. I am now 38 and feeling good, touch wood! I would like to get another biopsy to see if there is any change.

[boiler1993]

JohnnyJ - My symptoms have always been intermittent since they started. My first symptoms were when I was 19 (I am now 22) - however all my symptoms have been small fiber and it looks like with your emg some of yours are large fiber but I think a lot of the same thinking applies here. I was always looking for triggers and for me sometimes I can see the trigger that is causing the symptoms and other times not. My first symptom was water trickling down my leg (or the feeling rather) and that always happened when I got warm walking home from classes. I also had full body stinging triggered by erging (I was on the crew team at the time). But by far the biggest trigger I think is stress and lack of sleep. During stressful times (a good portion of my junior year in college I wasn't getting a lot of sleep and always working or studying and also when I first moved for my first job the first few months I had much more frequent symptoms) I always get sensitivity to my clothes. I started waking up in the morning with my feet burning and spend the day with sensitivity and that was when I decided to try medication which has been working well for me thus far (fingers crossed). What I did want to say is that I remember when my symptoms were intermittent always second guessing myself - like maybe I don't have anything wrong going on and I am fine or maybe I don't belong on this forum because I clearly am experiencing less pain than others and I would feel bad - my advice is trust yourself and try to find triggers but don't agonize over it! Not everything necessarily has a trigger and neuropathy is a sneaky little jerk so some things just cannot be explained. Also I think it is hard to see progression because it can be so slow - if I think back now to when my symptoms first started I would say yes I think they increased (hence why I tried out medication) but it was not rapid. Everyone is different with their neuropathy so just because your symptoms or progression is different doesn't mean it isn't there!

That was long - hope it helps Hang in there!

[pinkynose]

so I'll try not to repeat too much.

At the beginning I had all your symptoms except weakness. I also had burning but really didn't notice it much as the other symptoms were causing me more problems. The weird crawling sensations and occasional sharp stabbing pains were intermittent and random. After a few months the only thing constant was the burning and that is still the case a year later. I rarely get any of the other sensations now. For me diet and stress are my biggest triggers and cause me sleepless nights which makes everything worse.

For stress I have a few relaxation type CD's that I listen too and that helps. I also meditate every morning. With diet I avoid sugar and processed foods and other foods I have personally found to be a trigger.

Keeping a journal has been a good practice for me although I have to remind myself that sometimes there is no rational reason I can see for a symptom popping up. It has helped me to see my progress and catch things that have been triggers.

[zkrp01]

Originally Posted by JonnyJ

Thanks for the replies; it's good to know that not all cases end in severe pain and disability, so I know I need to focus on just today and not keep worrying about what the future may be.

Is it common for symptoms to be intermittent? And I mean very intermittent: my symptoms are there for a few hours at a time, but I also have hours and occasionally several days in a row with almost no symptoms whatsoever. They always return though, but it's been like this since the beginning.

I'm trying to figure out if there is a pattern in these symptom-free periods (ie. diet, stress level, etc.) to see if there's anything I can do to control the symptoms. Anyone has experience similarly intermittent symptoms? Or are most of your symptoms fairly constant?

to try and link curcumstance to symptoms. Changes seemed to come around too slowly to say when they changed but about every six months I could recognize something had changed. Speculations run from food to mood to barometric pressure. So do all that you know to do and that is all that you can do. Good Luck, Ken in Texas.