Can someone help me with neuropathy

Pixie Dust

Anyone on here that has neuropathy I would really appreciate your help. I have it really bad, My last chemo treatment was in May and it had to be reduced because of this. It has been getting worse day by day. I cannot even go shopping for 30 minutes then I have to leave because I cannot hardly walk and also left hand and fingers hurting so bad from holding on buggy. My ONC has started me on Neurotin 30mg 3 times a day. 1 pill for 3 days, 2 pills for 3 days then 3rd pill after 3 days. Last Sunday was my day I was suppose to start 3 a day but I did not because I fill like I am drunk on just 2. I have to stay in a recliner almost all day with my feet prompt up on a pillow. Only relieve I have, but it still bothers me. My ONC said I need to take these and get them in my system first and see how I am doing. He said he may have to keep giving me a little bit more stronger mg. before it works. I cannot drive with just taking 2. When I know I have to drive I skip my morning pill. He also told me that he could not tell me if I would get better or worse and even said that I may have to live with this the rest of my life. I have not felt any better by taking the 2 but I guess I will start taking the 3rd one soon when I want to stay in the bed 24hrs. a day feeling drunk or asleep. Right now my life is miserable with this. Especially when feet, toes and left hand and fingers are like pins, needles, numbness and sharp pains is happening. Any help would be very appreciated. Thank you, Pixie Dust

desertgirl947

I wish I could be a help, but

I wish I could be a help, but my neuropathy was amazingly minimal.  Two of my littles toes on my feet are still numb at times, two years after finishing chemo.  I did the ACT regimen every other week over four-month period.

I am sure you will get more helpful responses, as I have topics like this before, I think.

ee

RozHopkins

I don't know of my pain is

I don't know of my pain is the same but I have bouts of pain in hands, fingers and toes.   Not pins and needles but aching.  I also get bouts of pure fatigue and have to sleep, my body actually floats off (Hard to explain).  Don't know if arthritis or not but a few days of anti inflamatories appear to do the trick (until next time).  Haven't bothered with a diagnosis as other things have been going on and have dealt with them first.  For me personally, if the ant inflams keep working and one need to take them once in a while I will live with that for now.  I am sure lots of ladies will help answer your questions soon on this site.

CypressCynthia

I am so sorry for what you

I am so sorry for what you are going through.  That just stinks!

I was lucky in that the neuropathy has been very mild for me.  I tried to prop my feet up, like you, and also I kept them bare and as cool as possible.  I tried to walk a little each day - even if it was just around the block to keep my legs strong.  But I just didn't have it that bad and I know it can be very hard.  Sending cyber hugs and prayers that you feel better soon!

Here is a link:  http://chemocare.com/chemotherapy/side-effects/numbness-tingling.aspx#.U-Q0N1J0zIU

Pixie Dust

CypressCynthia said:

I am so sorry for what you

I am so sorry for what you are going through.  That just stinks!

I was lucky in that the neuropathy has been very mild for me.  I tried to prop my feet up, like you, and also I kept them bare and as cool as possible.  I tried to walk a little each day - even if it was just around the block to keep my legs strong.  But I just didn't have it that bad and I know it can be very hard.  Sending cyber hugs and prayers that you feel better soon!

Here is a link:  http://chemocare.com/chemotherapy/side-effects/numbness-tingling.aspx#.U-Q0N1J0zIU

THANK YOU FOR YOUR RESPONCES

Cypress Cynthia. thank you for the website. It was very helpful. Just like you I have to keep my feet bare and cool. I cannot even wear any shoes it hurts so bad. When I have to go out some where (which is rarely) other to ONC visit I wear the lightest house shoe I have and when I get there I pull them off. I try to keep my feet clean so they won't stink.LOL.  I drive barefoot and it is still painful and when I grab onto the steering wheel my left hand and fingers start hurting just like my feet and toes. I very seldom drive anymore. I have just been driving more than usual lately because hubby had knee replacement surgery. With everything that you have gone through in your past years and now I am very happy that your neuropathy is not very bad. My heart goes out for you for what you have been through and me with my neuropathy makes me feel bad for complaining to compared to what you have had to face and still yet in your lifetime. God works in mysterious ways and he has a plan for you here. Praying that things are going going your way. I would also like to thank everyone else for your comments, and my prayers are with you all. Thank you, Pixie Dust

carkris

Pixie Dust said:

THANK YOU FOR YOUR RESPONCES

Cypress Cynthia. thank you for the website. It was very helpful. Just like you I have to keep my feet bare and cool. I cannot even wear any shoes it hurts so bad. When I have to go out some where (which is rarely) other to ONC visit I wear the lightest house shoe I have and when I get there I pull them off. I try to keep my feet clean so they won't stink.LOL.  I drive barefoot and it is still painful and when I grab onto the steering wheel my left hand and fingers start hurting just like my feet and toes. I very seldom drive anymore. I have just been driving more than usual lately because hubby had knee replacement surgery. With everything that you have gone through in your past years and now I am very happy that your neuropathy is not very bad. My heart goes out for you for what you have been through and me with my neuropathy makes me feel bad for complaining to compared to what you have had to face and still yet in your lifetime. God works in mysterious ways and he has a plan for you here. Praying that things are going going your way. I would also like to thank everyone else for your comments, and my prayers are with you all. Thank you, Pixie Dust

I had pretty significant

I had pretty significant neuropathy. I have it to my knees, fingers. now but it was up my arms, face, eyes even. chemo was pretty toxic for me. Vitamin B6 is helpful. shoes with wide toe boxes. I cannot wear certain shoes or thong like shoes. I have trouble kneeling because my knees hurt. However it has improved to the point of being managable. It frustrates me sometimes but I have learned to adapt. The neuropathy in eyes, face arms, went away pretty quickly. the hands are better. Everything is worse if my hands or feet are swollen. I used to have trouble picking up my feet but now I am much stronger so its ok, I am a nurse and i can carry on. If neurontin doesnt work see if lyrica will. I cant take them because I get depressed on them (figures) Look into what people do for diabetic neuropathy, there are special socks. I remember even the sheets hurt on my toes, this is all better. so I think you will eventually improve. Hugs

bonbondidit

Can someone help with neuropathy

Hi Pixie dust,

 

Have you ever tried Lyrica?

McMarty

Neuropathy

Pixie Dust - there is a vitamin supplement that your Dr can prescribe and it TOTALLY helped me!  GOSH I wish I could think of the name of it.  It is a B6, B12, Folic Acid combination but it is already what your body turns those things into before it aborbs them.  Hold on let me see if it is still on my Walgreens list..........VitaCirc B.  The person on this board that recommended it called it something else but Walgreens substituted the VitaCirc B.  My Doctor fought me a little on it.  Said there was not enough proof that it helps.  He prescribed it and it did help!  ALOT!!  I have also taken a really good combo of that from GNC and had even better luck but the prescription stuff was MUCH cheaper

I hope you have even better results than I did

Marty

Pixie Dust

McMarty said:

Neuropathy

Pixie Dust - there is a vitamin supplement that your Dr can prescribe and it TOTALLY helped me!  GOSH I wish I could think of the name of it.  It is a B6, B12, Folic Acid combination but it is already what your body turns those things into before it aborbs them.  Hold on let me see if it is still on my Walgreens list..........VitaCirc B.  The person on this board that recommended it called it something else but Walgreens substituted the VitaCirc B.  My Doctor fought me a little on it.  Said there was not enough proof that it helps.  He prescribed it and it did help!  ALOT!!  I have also taken a really good combo of that from GNC and had even better luck but the prescription stuff was MUCH cheaper

I hope you have even better results than I did

Marty

Neuropathy

Marty, thanks for the info. I wrote it down and I will show it to my ONC at my next appointment. I will try anything for some comfort. Hope you have yours under control. Another thing I would like to say. I love your picture !!!! Have a good day, Pixie Dust