I've had an increase in symptoms and pain the past 2 weeks, and i didn't want to jump the gun in case it was just a flare, but it seems like there is more to it at this point.

I was having a slow steady improvement most of April and May, but June hasn't been so kind yet and the past 3 days have been particularly bad and my struggles at work were reminders that I have a long way to go in getting better.

I honestly don't know the cause of increased symptoms, but the week prior to the increased pain I went on vacation for a week. During that time I indulged in more junk food, more alcohol, and more time on my feet than I have previously allowed myself prior to the vacation. It could be a combination of all 3 or just the natural progression and or waxing and waning of this awful disease. I guess the most important thing now is that I'm back on track towards treating my body right and taking it easy on harmful stimuli.

So here's a journal entry so I can look back and find clues to managing this soul draining disease.

Good morning....same thing happened to me after vacation. My SFN pain is 24/7 in varying degrees throughout the day. I decided to use some fatigue meds that I had left over from chemo and for 2 days I was having a ball on St George Island. We were there for a week.

We got home on a Sunday and I spent the next 3 whole days in bed. Could not get the pain under control even with pain meds. It was just horrible.

Take care of yourself and thanks for keeping us posted on your progress.

Debi from Georgia

I seem to recall you mentioning some sort of fibrosis growths in your feet? If so, then, these may have some compressive mechanical actions on nerves. So the more you use your feet the more the potential for pain. This may respond somewhat to Lidoderm patches... so you might try them.

You know I attributed the fibromas to the pain for the first 2 months before the pain in my right foot (which has no fibroma) became worse than the pain in the left foot (which has a marble size fibroma)

Regardless of the cause of pain I have tried lidocaine cream in different areas and have no luck with pain reduction. Not sure if the patches are better, although I asked my podiatrist for a lidocaine patch prescription and he directed me to the cream. It was a waste of money in my case.

The cream is not going to penetrate well, unless it is compounded with a special transdermal gel. If your lidocaine was packaged commercially, those vehicles are typically NOT going to work, they are for skin pain only, and won't go deeper.

Also where you apply it is important. Don't put it where you feel the pain, put it over the nerve distribution on the instep. That is far more efficient for pain relief.

5 weeks since the last update. Things have really slowed in terms of my day to day symptom changes so there hasn't really been a reason to do weekly updates at this point.

Good news is I have not regressed since the beginning of June. I might even be able to say that I've had very slight improvement, but it's more likely it's just the same. I have good days and bad days still, but my pain has been limited to feet aches, "walking on rocks", general parenthesis, and very occasional lightning pain. Burning pain is nearly gone. I've been getting itchiness in and around my ankles a day or two a week, but not sure how that's related.

I still feel an overall improvement in sensation normalcy in my feet since the beginning of the year. Seems to be best after being off my feet awhile, and gets worse with extended time on my feet, and especially after showering. It's as if carpet begins feeling like "steel wool" when walking barefoot. Very unpleasant but tolerable.

The biggest breakthrough has been at work. For the past 3 weeks I have been able to upgrade from tennis shoes to work boots. Beginning in January I couldn't wear my work boots for longer than a few minutes so I switched to tennis shoes as a substitute. Recently I tried wearing the boots again just to see how they felt on my feet and they have actually been relatively tolerable. This might have been the case sooner, it just happens that 3 weeks ago is the first time I dared to try.

Some days I can be on my feet a few hours and other days I'm in pain after a few minutes. Haven't pinpointed and exact reason for this other than luck of the draw for that particular day.

So I'll continue to emphasize that I'm significantly better than I was in January-March but probably only slightly better than I was mid April-Today. Things have become somewhat tolerable and I've continued to adapt my lifestyle, but I'm still hoping to get back to "normal" someday.

Just found your thread as I have not visited lately. Thanks for posting. We all have had similar journeys. I wish I would have better documetation of mine. After at least 4 years I have found few answers but thank God my pain has been minamal. The discomfort and the constant search for the right footwear has been the biggest irritation. I think orthotics has been the best thing I've done. sounds like you have done all the right stuff. I would just caution you not to do any radical unproven proceedures without checking in here first. Keep up the good work.

Another month, another update. Still learning about my neuropathy. What makes it better. What makes it worse. How to manage it with foot wear. And what my limits are.

Heel pain definitley better than when this all started. Worst pain seems to have moved into the balls of my feet and into my metatarsals. Best way to describe it would be a burning cramping pain. I'm not sure a word exists to accurately describe it which makes it difficult to explain it.

Rest really helps the pain and discomfort. If I can stay off my feet I rarely feel pain. Actually I feel best in the morning when I first wake up before I have to stand, walk, or stress my feet.

I've probably extended the time I can spend on my feet before the pain becomes unbearable. 10-15 minutes standing. 30-60 minutes if I'm walking. It's comparable to slowly moving your hand towards a flame. As you get closer it becomes uncomfortable, then painful, and the unbearable. That's how the pain builds up when my feet are stressed. Sitting down with my shoes off and I the pain and discomfort subside usually within minutes, but it's usually sometime before I feel comfortable trying to stand again.

General burning and freezing pain still don't bother me often. The other day when I did feel unusual temperature sensations it was limited to my toes.

Still taking supplements but have limited it to ALC, R-Lipoic, Multivitamin, COQ10, Magnesium, and Fish Oil and within the last week have put forth effort to improve my diet and excercise. I hope I can keep that up.

Hi IH8PN, i was wondering how you are and can you tell me what are your most important findings. I am interested because a friend of mine experiences some of the same symptoms.

Good luck!

2 months since last update. I'm still moving along dealing with the PN. There are a few things I've been meaning to mention, and I hope to catch this thread up by the end of the week.

For now I just wanted to note that half way in to my shift at work and it's probably the least amount of pain I've had in my feet in the past 11 months. Most days are moderate pain, and some days it's severe. Today I'd call it "discomfort." I know it's just "a good day" but sometimes you need milestones to judge progress. When it's so easy to get depressed dealing with chronic pain, you'll take any reason you can to remain cautiously optimistic.

Hope everyone is hanging in there.