Vent about Permanent Neuropathy

So weird BB. My neuropathy in my feet is so much better on cold days! I really only notice, now, when, I hike over an hour in warmish weather. I use to have to stand on egg crate material if I even stood on cement floors. They use to burn when I put my feet up (going to bed at night). I saw improvement up to 3 years out of chemo AND religious use of Garden of Life Vitamin B12 Organic Spray.

I also had it in my fingertips, but the only thing I seem to have left from that is dropping things a lot. I don't feel like it impedes my dexterity, otherwise.

There is hope, but if I don't use the B12 spray, the symptoms become much more apparent.

I use it, too. It helps with neuropathy. Some chemo meds will deplete B12. The neuropathy I had with Taxol is gone, but I continue to take it. From their experience, I may not stop.

Good to know.I'm on it!

well my nueropathy seems better lately, but I just had surgery for hydrocephelus and that has changed lots of things of late. I do take nuerontin and feel that helps my feet

Gardengypsy - I have painful neuropathy that gabapentin only helped a little. My doctor prescribed Cymbalta and the pain was gone almost immediately. Now I'm considering weaning off Gabapentin just to see if I even need it now. I also know someone who takes Lyrica for neuropathy.

Bosum~ Damn! My onc says it was safe on the liver!

Blownaway~ Thanks! I am seeing a neurologist this week and will be asking about the Cymbalta. One thing the Gabapentin is known for is its effectiveness with hot flashes. I've had very little, even thought I am taking Tamoxifen.

Hi all. I also have neuropathy from an autoimmune disease. Cymbalta helped me much more than the neuropathy drugs did. Good luck to all navigating this disease....

My neuropsych eval at Brigham Women's is tomorrow. I'm hoping for some clarity.

Garden - yes, good luck. We'll be waiting for your report.

So Bosum are you taking anything? I can't remember if you have severe neuropathy pain or mostly numbness.

Bosum~ I had one of my worst neuropathy days ever also. Holiday stress and work? I went to bed with Ibuprofen last night.

I attributed it to the fact that I didn't wear supportive shoes in the house yesterday.

tangandChris - I haven't heard of it appearing as far after taxotere as your are, but one never knows with this darn cancer & side effects of the disease & the cures... Can you send your MO questions via secure email? My MO sent me to a neurologist. She offered several drugs but those only help pain, not the condition. Another place to start might be a podiatrist. Both my PCP and my derm doc told me recently I might do better with particular shoes &/or orthotics recommended by a doc.

Two basic divisions of CIPN: those with pain, and those with numbness; and o.k. a third if you have both, but for my comment, this third group would be lumped in with the pain group.

If you CIPN gives you pain, yes, the SSRIs and SNRIs do seem to offer relief to many CIPN sufferers. Numb group, you are outta luck.

Two other basic divisions: If you strictly have only CIPN, or if you have OTHER mitigating factors that might actually be causing your symptoms (or, at least, adding to them.) Obviously, seeing a doc may help IF they can actually determine that your pain is from something else that there is a cure, therapy or drug for. If you are strictly CIPN, again you are outta luck but the docs will take your money all the same. The best you can really get from them is an Rx IF pain is your problem.

Some PT can be money well spent, if it can help with balance issues, etc.; and I won't make a blanket statement about that because I have read here that some of you do benefit.

What I just wrote is what I think, but I want you all to realize that I have come to this view by what ALL OF YOU have posted on here so far. I am only summarizing.

Thx for responding ☺

I'm just not sure if my symptoms match up with neuropathy or what. I've been reading online on and off today and from what I've seen there are some that start having problems with it months after chemo. I did have some trouble during chemo but it seemed to get better after up until the last few months.

I just want to know what is happening to me. I feel like my body has really betrayed me. I can't be in denial about this anymore, something is wrong.

Bosum~

I, too, look for correlation and it doesn't always make sense either. Strangely enough, Ibuprofen works well for me. And I know that can't be good for you...

I have never heard of the Benfotiamine!

Do you have a naturopath in your area who specializes in cancer? Or how about an herbalist? I believe that there are some experts out there who can guide us and know what they are doing. The part about being estrogen+ is super frustrating to me concerning supps, but I am not going to complain because it is also highly treatable in other ways.

I am about to make some appointments with alternative practitioners and will let you know what I learn.

For the neuropathy, my PT just gave me an exercise she calls "flossing" the nerves. It's impossible to describe here, but basically you are lying down on your side and holding your bent leg behind you. You gently move your leg back and forth.

I rescheduled the neuro eval for next week. We'll see what the experts say...

Hi everyone, popping in to ask, does anyone see improvement after taking vitamin D3? I have been taking it to raise my D3 levels, and I do believe it helps with neuropathy. I take 5000 u daily, this is a mega dose, but not a BIG mega dose, know what I mean? Sorry if this has been covered recently on the thread, I went back and bit to see, thought I would ask. Tanga, you might ask your team about adding it to your diet, my hubby takes it too, he is a nurse and on his feet for long periods, has chronic foot pain. It has helped him. Our family doctor recommended it to him before I had cancer, I did not start it till I had chemo induced neuropathy. Thanks for your replies, and Happy New Year!