Whats my future?

I'm 82 . I've had bad balance and tingling ever since chemo ended 2 years ago. I have had good luck using the Liberty Super Patch for my balance.

Like you, my Neuropathy is largely numbness, balance issues and hammer toes. It is worse at night.

My case is a lot worse. I don’t feel my feet and half my legs are numb. My hands I can’t feel them constantly cutting my hands while cutting up food for cooking. I have been to the emergency room several times for stitches. First time I looked down and saw blood all over the place I freaked out. The tremors are caused from the motor neuropathy. My internal temperature regulator is broken. I stay too cold or gets really hot. I keep a sweater in the car for when I am cold. It has affected my heart. My blood pressure goes all over the place along with my heart rate. It has affected my bladder. I have learned to try to go every hour otherwise I might go all over the place without realizing it. I now have nerve pain in my ribs that’s driving me crazy.

I was taking tramadol as precribed by my pain doc. The neurologist put me on diazepan, 5 mg, Diclofenac potassium, 50 mg, and gabapentin, 200 mg. Three times a day. As I said, the first couple of days I was kind of dizzy and unsteady, But in a couple of weeks I was back on my bike, cycling 30-40 miles a week, something I had not been able to do in a year and a half.
Not saying it will work for everyone, but it sure helped me a lot. Pain dipped down to about a 2 or 3, occasionally revving up to a 5 on a n occasional bad day.

I became a hostage of chronic PN mostly in my lower legs and feet in the past few years. I still work in the school system full time, but the pain in my feet became increasingly difficult to mentally contend with. My symptoms are a burning pain in my feet, numbness in my feet and toes, cramping in my legs, and an overall discomfort in my legs and feet that at times makes it difficult to get to that point where I can comfortably doze off into dreamland at night.

I wake up in the morning knowing I'm going to be contending with rising and falling pain spikes like an EKG graph. My pain spikes are usually based upon usage, or the type of exertion I'm putting on my legs and feet. Certain kinds of movement just happen to set it off on an upward spike where I have to relax, get off my feet, take my shoes off, massage my feet, and get to that point where the pain starts to recede back down to what might be called an acceptable level.

My PN is always there. I've learned and accepted the fact that there is no cure for it as of yet, and maybe never so. To me and many others, it's just about managing the pain and discomfort. At almost any given moment, I can tell myself or anyone else who might want to know the level of pain or discomfort I'm at on a one to ten scale. I call one to one and a half a pleasant near full retreat. I call a six to six and a half the level where I have to stop and deal with it because I'm in danger of it spiking to that eight, eight and a half level where it's excruciating.

I have hit this thing from so many angles, stretching/yoga exercises; supplements designed to target nerve damage; working my feet and legs on machines at the health club even at the cost of the pain endured; chiro; massage therapy (my PN supposedly resulted in my lower spine; getting off a cholesterol drug I was on; trying out better shoes; using inserts in them; and this past year finally trying Lyrica (which, by the way, is challenging in the weight department for me).

I will report that in the last month I've had a noticeable reduction in my pain cycles. I have no idea what of the things I've been trying in tandem might have led to this reduction in my pain cycles. I have no illusions about a real recovery, and my pain cycles may well return to their previous levels. But this recent, say, 25-30% improvement in my pain cycles has been a welcome respite for as long as it lasts.

Have you moved to another part of the country where barometric fluctuations are smaller (Hawaii, San Diego, Miami, Phoenix)? Just wondering if this could account for your reduced pain. I know that my pain spikes when the local barometric pressure drops 0.2 inHg or if it gets and stays low (< 30 inHg), when winds are strong and gusty or when travelling to a higher altitude. I live in Denver (the "mile high city"), where barometric pressure fluctuations can be as bad as 0.8 inHg in one day, and where strong gusty winds are not uncommon. Thinking of moving to San Diego. My pain doc says it is common for people with chronic pain (arthritis, fibromyalgia, PN) to suffer spikes with barometric fluctuations which apparently put more pressure on the nerve fibers.

To go back to the original question: What is my future? I used to ask myself that question, especially in the first few months after receiving my PN diagnosis. In those months, I felt myself spiraling down. I was telling myself that now that I had PN, I had to find a "new" future. But I was wrong. The future I'd had before my diagnosis was STILL my future. What I needed to accept, however, was now that I had PN, I must be prepared to make little – and sometimes not so little – accommodations as PN-related challenges came along. My future hadn't changed. Only my belief in my future might change, and then only if I let it.

I never even thought about it from that angle. Interesting. I'm always willing to take new information in. Thank you for that.

I can certainly "feel your pain" as I have been fighting chronic pain for eight years. This was due to a ski fall on my lower back and buttocks. Can you pinpoint any event or specific time that your pain developed? I hobbled around for the better part of a year before I found a private practice neurologist who put me on a cocktail of drugs the made my pain drop from about a seven down to about a two. I ws able to get back on my bike and start cycling 30-40 miles per week. Another thing that helped me was the implant of a spinal cord stimultator that helped stabilize my pain. I hope you've had an MRI to see if there is something that might be contributing to your pain.
I will say a prayer for you. No one really understands severe, chronic pain until it hits them. I wish for you better days ahead. May God grant you the strength and grace to get through each day.

And, of course, I never meant to suggest that PN has not taken a toll on my life. It has. I have had to make a number of accommodations in my day-to-day living. Simple faith in my future being unchangeable wasn't enough to prevent these accommodations from having to be made. Nevertheless, the future I was pursuing in the years before my PN diagnosis is still the future I'm pursuing at 79-year-old PNer, albeit with a number of no-choice modifications.