what is like to experience neuropathy as we age

people can just be so bad...
what a world.

I find Gabapentin helpful.
I was taking 400 mg three times a day but during a recent hospitalization they reduced it to 300 mg three times a day but the neuropathy is worse.
I’m going to ask my doctor to increase me back up to 400 mg three times a day.
That helps the neuropathy somewhat.
My feet are always painful, numb and pins and needles.
I also had an infection in one foot recently, probably cellulitis, which required two courses of antibiotics to solve. It seems to be ok now so I’m just dealing with the neuropathy.
Hopefully the increase in Gabapentin will help, but I don’t expect my feet to ever return to anything that resembles normal.

82 now and have been dealing with neuropathy numbness and tingling that started in my toes in my 40s and now in my legs. Fortunate to not have any pain symptoms with my neuropathy but I do with carpal tunnel in the hands and degenerative arthritis in the spine and other joints. I just work on staying mobile and taking it one day at a time. 🙃

@nekcarolyn
Do you have leg weakness?
Jake

Yes and it seems to be increasing. I am going to use my rowing machine daily when I can.

I have to agree with Jake (@jakedduck1) regarding worrying about the future. There is no doubt in my mind that PN has a mind of its own and progression has a different pattern for everyone. I do my best to remain active which at times is not easy. I don't push it on bad days, and I'll be more active on good days. I feel we should not worry about things we can hardly control, like PN. Try to remain active, keep moving and do the best you can it might even slow down progression.

foot masage machine does this help? What brand? I have pacemaker can I use electrical machine?? Thanks

Hello,
So sorry about what you’re going through.
I am 68 years old and was diagnosed and confirmed for idiopathic axonal large fiber peripheral neuropathy in February of this year. I can only tell you that the condition is a progressive one and all treatments are aimed at slowing it down. It progresses differently with each person and it’s impossible even for the medical field to know the progression path.
I had the burning, tingling, and numbness in the beginning only on the soles of my feet. Now I have pain added to those on the soles of my feet with the burning, tingling and numbness now traveling up my legs above the ankles but below the knees without the pain. I have no idea how all this will progress. But I live day by day and try as best to deal with what is going on at this moment without thinking at all about the next moment. That’s all we can and should really do.
Wishing you the best and try to keep up your spirits.
Take care and have a serene day,
gus

Most of these comments pretty well sum it up, I think, so I'll just add two.

First, check for side effects of any new or current drugs that appear to be neurological. Clearly, if the side effects are similar to PN (numbness, tingling, etc), it's worth paying special attention, but even if they may be more broadly neurological (headaches, for example), it's worth flagging them.

If your PN is progressing and it's a drug you are already taking, discuss with your medical team whether there is a chance that the drug may be making the PN worse, and if so, whether there is an alternative solution that you can test out. (Note that most doctors aren't actually likely to know the answer, since it's pretty much oncologists who pay attention to drug-induced peripheral neuropathy. Your pharmacist may also be a good person to ask.) If it's a new drug, just watch to see if the PN progression gets worse. In both cases, it may take a couple of months to be sure one way or the other.

Second, it's not impossible for our ability to absorb certain key vitamins to change as we age, or for our diet to have changed. If you have not had a recent test panel for critical vitamins and minerals (especially the B vitamins), you might ask your doctor to run one, and make it something that you do every year. High B6 can trigger PN, and low B12 can also make it worse, for example.

I don't actually know whether having one form of PN (especially, but not limited to, "idiopathic"), makes us more vulnerable to other forms, but it's hard for me to believe that the risk of drugs or vitamins potentially making the situation worse is zero. Especially since chronic neurological symptoms of various (non-PN) sorts are known to be able to retrain your brain, increasing the risk of central sensitization.

Hi, nekcarolyn (@nekcarolyn)

I'm 80, not yet an 80-er, just a straight 80. I, too, have no pain. It seems to me, also, I've only minimal numbness (my neurologist and I love to quarrel about this 🙂 ). My biggest problem is poor balance. Honestly, though, my balance was poor when I was a straight 70, and no great shakes, either, when I was a straight 60. Although I didn't get my PN diagnosis until only three years ago, it's pretty apparent that PN had been sneaking up on me for a couple of decades. But has it gotten worse? Honestly: yes, but only incrementally. From the many posts I've read, for some PN'ers symptoms worsening rapidly, For others, though, they worsen but only slowly––if at all. I hope you find, as the years tick by, that you're in this latter category: slow, or no worsening at all.

Cheers!
Ray (@ray666)