Vent about Permanent Neuropathy

I tried the floss exercise just now. My outer foot wanted to cramp when I turned my toe in, but otherwise it was o.k. Is it supposed to be done all the time, once a day, what? Gets a little ab work in as well!

I pray your days get better. I pray I don't experience that side effect because red devil was enough.

Hi, here I am after almost seven years. I still have totally numb feet, I feel the non feeling on the bottoms of my feet. Still I have had shoes slip off and not know it. My hands are like gauze is over them. I still have bad electrical type pain in my feet especially in the arches, ai yi yi! Dr is just prescribing something to try to manage my back pain, a strong anti inflammatory. I broke my back nearly three years ago and walking ir standing realll hurts to the paont I just stay home. So I hope this drug gives me some moblilty but will be surprised if it helps with the neuropathy. I will let you know.

Hi all, I am not sure if I have chemo-induced neuropathy or not. Before diagnosis, I already had some pain in my L shoulder (cancer side) and numbness from shoulder all the way to fingers on and off more than a year, which I think was caused by wrong sleep position. However, ever since I started AC chemo the pain came back and got worse, the pain and numbness are still bearable but I find them very annoying. Can chemo make the preexisting neuropathy worse?

Thanks!

Thank you so much dtad!

I got neuropathy on Kadcyla and ended my participation in the trial for HER2+ cancer after eight infusions.

Being on AIs for BR+ cancer also exacerbated the neuropathy, which is slightly improving now that I'm off of them. I've also noticed worse symptoms when I take Crestor.

Glad to vent here because you all know how hard this is. I avoid mentioning neuropathy to those well-meaning friends who don't understand

seachain - my PCP put me on Magnesium the first of the year for leg cramps. June will be the first blood tests since I started taking, so I'm interested tp see if the level is relevant. Since I started the mag, I've only had one bad leg cramp.

Liz,

I am sorry to hear about your diagnosis.

Yes, you have a long haul ahead of you. The chemo is there to save your life. Most of us do ok even though we have the SEs. For many people, they go away. For others, we learn to cope with them. The SEs have really impacted me.

Take good care.

Hi Liz,

I have had pins and needles in my feet (sciatica) and my right hand (nerve entrapment, shoulder and elbow), also phantom sensations in the right hand (as if it was plunged in hot water, very unpleasant). For the sciatica, I did physio and exercises, used a lot of Arnica, and took Magnesium supplements. It took a whole year to heal, and I have to do 'maintenance' for the rest of my life. For the hand, I wore a wrist and hand splint for over 6 months (it was after a macrobiopsy, I am doing data entry at work, mostly figures, i.e. using the right hand, nearly all day long, which aggravated the symptoms), used Arnica, and my physio did a lot of nerve flossing which really really helped. Another trick I used was to superimpose new sensations, to try and override the phantom pains: I would take my shoe off and roll a tennis ball under the sole of my foot, or I would wrap a cold pack (like those you use for sprains) around my hand for a couple of minutes. Although the sensations were never very painful (except for the sciatica), they would sometimes prevent me from sleeping, or wake me up at night. I have read elsewhere that St John's Wort tincture (rubbed in) might help, as might acetyl l carnitine supplements. I'll have a look on the German forums when I have a bit of spare time. I am glad it went away in my case: dropping things got me in trouble at work (especially a ready made dish of curry - but why do we have carpet in the staff kitchen area too?) and dressing, cooking etc. wre really tricky: for a time, I was buying precut vegs! Best wishes.

Hi Penzance and Minustwo

Great tips and thank you for sharing your experiences. I want to ice next Thur. No idea how I will manage this as there are no facilities, that I am aware of.

I have walked and cycles today and I have mild burning. However, this is likely to get worse and I think I should do whatever I can. Strange how cold cap is wildly available here but not icing.

Will keep you posted.

Liz x

Right on Eilmar! I speak firmly & insist that lasting neuropathy gets in my record EVERY time even though, as you say, there is nothing he can do. I do the same for lymphadema, which is another SE that most docs tell you will never happen. Some day maybe these docs will remember & speak up about what their patients are telling them.

GardenGypsy - I did go to a neurologist when I was still in active treatment. She did some poking & prodding & electrical impulse stuff w/specific instruments, but we didn't go any further because the "hope" was that I would get all my feeling back w/in to years. Sorry I can't be more helpful.

Franny - sorry you have to join us. When you get a moment, please go to My Profile and add your diagnosis & treatment specs. It does help us to understand each other better.

I am taking 900 Gabapentin daily. Helping take the edge off, but I could probably take more.

I think it makes me loopy.

Bosum,

My STM is so bad that I can barely function some days. I have never heard of a neuropath!

Have you been to this particular neurologist before? What do you hope they can do for you? Perhaps it won't hurt just to check in?

My neuropathy has been particularly bad this week. My PT says they they often see symptoms worsen when the seasons change because people are wearing different shoes. I have worn two new pair this week. They are sturdy, but new.