[grete]

I have severe peripheral neuropathy (PN) in both feet as a result of cancer (Waldenstrom). The cancer has been successfully treated but the PN is steadily getting worse. I take Lyrica and Amitriptyline. I'm on my feet for an hour a day wearing Crocs and can't wear shoes. It helps to sit with my feet up (level with my bottom) otherwise they get more painful, swollen and purple.

Q: My PN seem different from how most descibe it. The pain in my feet never comes immediately or as I walk. Instead the onset of pain comes a day or two after I've walked. Then the intensity of pain increases for quite a few days (while I avoid walking and sit with my feet level with my bottom) before they get less painful again. Is this normal?

Q: When I wake up in the morning my feet look normal, they are a normal colour and the veins are almost invisible. However, after a little walk, or by the end of the day, the veins around my ankles/feet get more pronounced and bothered? My feet take on a purple colour almost as if the circulation is bad. Is this "dealayed" onset of pain normal?

Thank you all,
Grete

[mrsD]

Welcome to NeuroTalk.

Please visit our PN board. Your issues may reflect the chemo you were on. It may also reflect if you still have some high viscosity issues going on with your blood. (hard to say on that second comment tho.).

Many people get PN from chemo drugs.

http://neurotalk.psychcentral.com/forum20.html

If you take other drugs routinely--- like statins for cholesterol, or some certain antibiotics (Flagyl, Cipro or Levaquin etc) you can have PN as a result of them.
We have a thread still in progress on "drugs that may cause PN"

http://neurotalk.psychcentral.com/thread122889.html

There are some supplements that may help...so do visit our forum.

[Rrae]

I just wanted to welcome you also!
This is such a wonderful forum and I've learned so much by being here. The support and understanding are beyond measure!

MrsD has given you some very good links....I hope to see you over at the PN forum!

It's great to have you!

Caring,
Rae

[ginnie]

I am glad you found Neuro talk. there are some good souls around this site. I hope you will feel welcomed. I am sorry you have cancer. I had to look up what you have before I said hello as I had not heard of this before. Not this kind of cancer. Did you take Thalidomide or bortezomib? I read where sometimes that causes NP. I have NP in my feet and ankles too but from a different condition. So sorry this happened to you. Do you get help with your pain? There are many of us that have some kind of NP and there is support and a caring community of people. I hope that you are in remission and not having to do chemotherapy. Come here anytime you need a friendly ear. ginnie

[Kitt]

Did you ever take Vincristine or the like? That can do a number on a person. It's one that a CMTer cannot ever take. It could kill us or we would be just laying there. Some other people cannot take it either.

http://www.cancer.org/Treatment/Trea...gs/Vincristine

Hope you get better.