Vent about Permanent Neuropathy

would love to have mine go away, steroids are funky. I lost my sense of smell after sinus surgery but recently had a steroid shot for back pain, bingo and smell is back,

Wierd

bb, glad we are active as well.

Not sure what I did but my back is happier

New back guy gave me a brace to wear, just for an hour or so and dang but it helps me feel better so, yeah my stress level is down

Picking up my foot orthotics on tues, so hoping they help my poor feet even just a bit

Enjoy the holiday

I guess I do have some pain, only it is not really painful. That's not doubletalk. What I mean is, sometimes (usually at night when I am just sitting) I will notice that my feet feel like I spent the day walking on hot sand. But to be even more accurate than to just say they feel burned, they actually feel "Indian burned." The bottoms feel like they have a friction burn. Since I know this is just a phantom sensation, I try to ignore it. It's always gone by the next day.

That said, I have gotten a tiny bit of feeling in the tips of some toes. That has happened within the last six mos. (so after the two year point.) Overall, my feet are down to about 10-15% numbness now.

Hope others are continuing to improve.

My neuropathy is in my feet (at least the neuropathy I'm aware of!). I've never had pain, just burning. Not tingling, just burning. Bottoms of feet just like Elimar.

If I were to write a mathematical function of the amount of burning felt, the coefficient for CummulativeTimeOnFeet would be slightly higher than the coefficient for HardnessOfSurface with a smaller coefficient for AmbientOutdoorTemperature, but the function would have a negative coefficient for ConsecutiveHoursOffFeet. Does that make sense?

Walking across the length of a Costco parking lot on a hot day can be worse than a 5 mile hike in the shade on a soft dirt trail. Standing on hard concrete painting for 3 hours is worse than an 8 mile hike on soft dirt trail.

Ultimately, it comes down to cumulative pressure on my soles over time and the ambient temperature.

I dream of a shoe insert that is both cushioned and very very cold. I spoke with a guy that made orthotics for a diabetics and he had never had that request which makes me wonder, is this burning sensation not the norm?

Elimar - I recently sprained my ankle (not neuropathy related) and the orthopedist told me I had terrible arthritis on the tops of my feet (near the ankle). Really? He asked if I was in pain. "No, will I be?" I said. His response, was "If you aren't now, you probably will never be." Phew! Of course, now that I know, I do notice some pain, but nothing that noticeable or as bad as the neuropathy (funny how we can distinguish different types of sensations in our feet).

"A crushed feeling," like someone squeezing your feet from the top and bottom?

I think the heat thing might be about swelling, further putting pressure on the screwed up nerves. I don't know. I started Vit B spray last fall and my neuropathy has gotten a lot better, but that's not a controlled study, so can't say that is why. I can now go on hikes, even when it is warm (though not always) and not even think of my feet.

MinusTwo, I hope the PT will be helpful to restore your mobility and improve your balance. Just one of the many ways we continue to pay for BC and its treatment. Ugggh!

(I had one fall, and it was way back in the first month of my CIPN. I fell because I was sitting and my foot must have fallen asleep (circulatory, I mean) but because of the CIPN I could not tell that had happened. So, when I went to rise, it was like standing on nothing and I toppled sideways into a restaurant chair and wall. It gave me a bad ankle sprain that I can still feel twinges from even now. Luckily, I have not had another incident since then.)

Hi Ladies:

I am 7 months out from chemotherapy. I have generalized decreased sensation in my feet and toes and an overall constant, low grade foot pain. My toes often feel like they are about to cramp. Those first few steps in the morning are particularly painful, but then the intensity subsides. I feel very much like a 90 year old when I get up and shuffle through the pain. I also drop things a lot and occasionally have pain in my hands, but not much.

I read somewhere, maybe in this board, that you can put your feet and hands in ice packs, like the cold caps used to prevent hair loss, and that decreases the chances of getting CIPN. I think the post I read was dated 2008, so this is not new information. I am so disappointed that my oncologist and/or the chemo prep class didn't discuss these preventative measures. So little time was spent on discussing these side effects. I feel as if the oncologists are so focused on getting rid of the cancer at all costs, that they under-emphasize or even invalidate patients with these life altering side effects.

I have told my oncologist at every recheck visit that I have PN. I read about trying alpha lipoic acid and I asked my doctor what she thought. She said I could try it, but did not know a dosage. Since CIPN is so common, I expected the oncologist to be knowledgeable about treatment options. She didn't have much to offer me other than, "give it time, it may get better". I went to an integrative medicine specialist and have been trying several supplements- Carnitine, glutamine, alpha lipoic acid, cercumin and fish oil. I haven't really felt a difference. I am now trying acupuncture, massage and nerve stimulation and may try some herbal medicines. It is frustrating because I feel like once the cancer treatment is finished, they feel their job is done and abandon you to deal with the side effects on your own.

I do appreciate that I am cancer free. I am thankful and feel blessed that I handled chemotherapy with minimal discomfort. I am also thankful that I don't have the balance and falling issues that many of you are experiencing. However, it is hard to accept that this may be the new "normal".

bb, so you were walking with heavy flat footed? Gee that is me and the nuero guy I saw gave me a pt slip for gait therapy

Gonna keep in mind but for now gonna see the nuer surgeon next week for the weakness in my legs

I had the needle test done by 2 dif guys, both basically showed same although I only have report from one but picking up the other one tomorrow

I did not have chemo but did take al for 5 year

I am guessing mine is that or old injury

Bosum - I agree I need balance exercises - but I have to finish shoulder/arm PT first since I still can't lift my arm to get things out of the cupboard or dry my back or even close my own car door. UGH!! I have started going to the gym after PT and riding on the recumbent bike and walking the treadmill for awhile. We'll see how long that lasts.

My old normal "smart" nerves: Someone is rubbing a feather over my pinky toe and I can feel it.

My new normal "dumb" nerves: Someone is rubbing coarse sandpaper on my pinky toe and I can feel it. Or it it tree bark? Maybe it is berber carpeting? Well, I'm pretty sure there is something touching me anyway.

Minustwo. Are you describing my foot exactly? Numb like that and get fierce electric shocks at intervals Fell a couple of months back and broke a rib. Sometimes throat suddenly feel wooden and I start limping So hard to predict.

I have had the emg test done twice.....One said I have neuropathy and one said No! But I know my feet are Numb!

So, got new set of nuerologist and nuerosurgeon and the nuero guy wants to redo the test himself as he thinks other test were goofies

Blood tests today to see if I am vit b deficient or if lyme is present. I think I will test positive on both but this time hoping to have something in former off treatment

Eli - I haven't seen my MO since I broke my arm, but I'll report his reaction when I do. I expect 'ho-hum'. The ortho doc is an "upper arm/shoulder" specialist & wasn't interested in feet problems. Oh, other than to tell me if I fell again I'd be in surgery.

ChloesMom - really weird about the numb throat.

Proud - I've been thinking I might go back to the neurologist & get the tests done, but I'm so sick of docs. And I'm not sure what an updated diagnosis would gain me since there's nothing to be done. Also I'm fortunate that while I have profound numbness, I rarely have any pain.

Bosum - sorry to hear you're back to square one.

Yes, I get tired of seeing doctors whether they might be useful or not. I want to throw all of them in the trash so my life doesn't revolve around doc appointments.