Living with Neuropathy - Welcome to the group

@jeffrapp
Hi there Jeff,
I’ve had Neuropathy about 42 years. It’s believed to have been caused by long term seizure medication usage.
My theory is that the Neuropathy improved after my lousy eating habits got better. I totally avoided any foods that had any semblance of nutrition associated with them. I use to eat my meals at the bakery. I was a nutrition nightmare. The way I ate I had to have Vitamin deficiencies which has a direct link to Neuropathy.
I’m sorry to hear you had cancer. I can’t imagine how frightening hearing that diagnosis would be. I have read a lot about cancer and anti-cancer treatments as causes of Neuropathy. According to the Lymphoma and
Leukemia Society 10-20
percent of people with cancer develops Neuropathy.
Were you experiencing any type of neuropathic symptoms prior to your Cancer diagnosis?
I have never had a skin biopsy, probably because my nerve conduction study and EMG showed plenty of evidence of nerve damage. Am I correct in assuming Small Fiber Neuropathy doesn’t show up during EMG & Nerve Conduction studies?
I’m clumsy, do you have that problem? I have trouble walking straight too. When I walk down the street I veer out in the street or on a lawn. I don’t know if it’s Neuropathy related or if I’m just naturally uncoordinated. I’m afraid it’s probably the latter. I never used any type of topical products for pain or burning. I used Fentanyl for pain which helped some.
I hope your symptoms improve,
Health & happiness,
Jake

@jakedduck1 There's a whole constellation of symptoms that can be attributed to neuropathy. The things you mention could quite possibly have neuropathy involvement. I have a list of things that could have neuropathy involvement, but the doctors can't say for sure.

I suppose that the menu my wife produces is slowing down my progress. She enjoys cooking, and we (almost) always have well balanced meals. Her mother taught her well.

Jim

It wasn't until I was diagnosed with Small Fiber Poly Neuropathy that I learned of the disease. Never heard of it prior nor did anyone I know. Setting myself aside, I also learned that cancer survivors are often left with this not so pleasant souvenir. Of course surving cancer is a feat in and of itself but I was dumb founded to learn that patients who have triumphed can be left in such misery. Call me naive but, it really pisses me off! Especially when I sit in the Apheresis unit for my lidocaine inusions and observe the sweet, innocent children fighting for their lives. The thought that IF they conquer cancer they may be left with debiliating nerve damage for the rest of their young lives breaks my heart. I dont mean to be downer but it is reality. To all of you in this forum with neuropathy induced by cancer treatments or any other treatments used to help existing medical problems prior...I am sorry for your unpredictable, unfair and unfortunate outcome. We wonder why these things happen and surely it can consume ones soul however, the fact that a forum such as this exists is an incredible dose of medicine that can not cause more symptoms, repercussions and damage. Keep the faith everyone, keep fighting and keep encouraging each other. Feeling thankful today.
Rachel

Thanks for an uplifting post to stay positive and keep fighting. I have to remind myself that I too will have good days and bad. I try to focus and remember the good days when my day is coming to a close.
I also tell myself - Take it one day at a time so as to not get overwhelmed with our medical issues.
So to all that are fighting- keep up the good fight and fight it one day at a time. Good luck to all.

Thanks that was very uplifting! Iv had a very bad day today! The pain has been very unbearable! If tears could heal me ,is be prefect again! I even thought of the perfect pain free soulation, and that would to blow my head off, as bad as thgere sounds! But I got in my car and drove to the lake and prayed, and God said, NO! So I came back home to my husband of 30 yrs and my 9yr old grandson! They give me the strength to go another day! So think about yr loved ones, (even though they don't get the pain yr in, and pray,pray,pray,and keep the faith! Maybe tomorrow I'll feel better!,pray for me!

resawaller I know your pain is beyond measure I know the feelings that are drawn from it I know escape seems the only option It is not God guided you back home to see the face and hear the voices of your loved ones You made it through and you will make it through tomorrow I will pray for you. I will pray for relief from your pain. Remember what God did for you today He will do it every day as long as you call to Him. Prayers for all of us.

One more day under your belt! Keep up the good work with positivity and take each day as it comes. You certainly are not alone.

I have a question for all of you. My neuropathy was chemo induced. It isn’t as bad as some of you have it by any means. Mine is more numbness and my feet feeling like they are swollen and tight. It seems to get progressively slightly worse with occasional burning in a few toes.
My dilemma is that my cancer has progressed and I now have stage 4 triple negative breast cancer. There are some tests being done now and the results will determine treatment. One of the two treatments (depending on test results) is known to cause neuropathy. I really am having a problem with the thought of knowingly walking into the pain that I know some of you are having. Of course, the alternative is not desirable either. I very easily may have to make this decision on the 16th. I am almost 70. My husband and family don’t see any choice; you do what is necessary to stay alive. But they have no conception of what is now only constant discomfort but could be so much worse. So for those of you who have the constant pain, which would you value more....quality versus quantity?

@cwm1 Quantity vs. quality. That's a tough one. If it were my decision, I think I'd go for the most quality that would give me the most time. Here in Oregon, where assisted suicide is legal, many people choose to decide at which point their quality of life is in the toilet, and make arrangements with an organization that facilitates assisted suicide. I'm not recommending that course of action, but there are some things we can do that give instructions as to what we want our end of life to lookook like. I have an advance directive on file at the hospital that outlines what I want and what I don't want at the end of my life.

Death is a subject that too many people are uncomfortable with, but it's a reality of life. Many people expect heroic measures in order to live a few days or weeks more. Often it's the family members who want the heroism. You sound like a woman who can make smart choices and this is a good time for making choices that YOU are comfortable with. Will a conversation with one of your doctors be a help? Or you might want to discuss it with a counselor. Many hospitals have staff members who are great resources for the kind of decisions you're facing. God bless you and give you peace.

Jim

@resawaller I won't labor you with the long story of my life, except to say that I've been there and most days I'm glad that I'm still around. The two primary things that have kept me going are my faith in God who will never abandon me, and my wife and two children and three granddaughters. Other things help, but nothing sustains me to the extent that God and my family do. I'm glad you are blessed with those same resources.

My practice has been to set a goal and tell myself that I want to stay alive until then. Sometimes it's been a day, sometimes a month. If I can't think of any goal, I'll tell myself that I will stay alive one more day. By now, setting those goals isn't always necessary, but some days I still need to do it.

Keep your mind focused on those who are important to you, including yourself.

Jim