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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Sep 6, 2019
In reply to @cwm1 "I have a question for all of you. My neuropathy was chemo induced. It isn’t as..." + (show)
@cwm1

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?

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@cwm1, I agree with @jimhd and I'm sure a lot of others here. That is really a tough question. Most of us learn to live one day at a time and try to stay focused on finding something that helps us and getting a little joy whenever and whereever we can. I found an article that may provide some help for you.

What are the best remedies for neuropathy from chemo?
-- https://www.medicalnewstoday.com/articles/323481.php

Hope you have a pain free day.

John

REPLY
Leonard | @jakedduck1 | Sep 6, 2019
In reply to @cwm1 "I have a question for all of you. My neuropathy was chemo induced. It isn’t as..." + (show)
@cwm1

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?

Jump to this post

Since you wrote I have been hoping for some wisdom but it seems to be alluding me. My Mom already had this discussion with her doctor about Cancer or any other disease that comes up. She is 89 and she doesn’t want any type of surgery or any heroic type treatments or measures. I argued and argued. I finally realized I was being selfish and I took her to the attorney to make the changes in her Health Care Directive she desired. I’m not sure I’m that strong. I have had very severe Epilepsy since I was 15 and medication induced Neuropathy since I was 35. Bad as the Seizures and Neuropathy have been I have enjoyed life and found happiness with the help of strong narcotics. However I never had anything as Devastating as Cancer. My neighbor, 55, recently was diagnosed with stage 4 Breast Cancer. She beat it once but decided not to go through it again. I believe it takes a very courageous person to make such a decision. If you decide against treatment it will be hard on your family. The most important consideration however is you. It’s obviously your decision and I imagine your family will understand, maybe not right away and they may be angry with you. Have your doctors mentioned any Neuropathy treatments? My Neuropathy got better but it took probably 25 years. Only you can answer the difficult question your asking. If it were me, I can’t possibly know what I’d do until I was faced with the problem but I might choose a treatment, if available, that may give me a little more time without causing significant long term problems. I’d go to a University Medical Library and run a computer search on the probability of Chemo drugs causing Neuropathy. I’ve done this several times and always found studies that won court cases for my Dad. Maybe find out what medication they are planning to use and talk to some Pharmacists.
May God be with you. You’ll be in my thoughts and prayers.
Blessings,
Jake

REPLY
tigreyes2004 | @tigreyes2004 | Sep 6, 2019
In reply to @johnbishop "@tigreyes2004, I'm not sure there is a best med to take for the pain since each..." + (show)
@johnbishop

@tigreyes2004, I'm not sure there is a best med to take for the pain since each of us is different and the different medications used may not stop the pain for all of us. I'm not a doctor so really can only speak to my own diagnosis - idiopathic small fiber peripheral neuropathy. My neurologist told me that over time it will get worse but he couldn't say how fast it will get worse. I think it depends on your diagnosis, any treatments you get that may effect the diagnosis, and your diet and lifestyle play a part in the progression (in my humble opinion). I do not have pain with my neuropathy. I only have the numbness but it's still a big concern if it gets worse. I also think that the medications only treat the symptoms and are not a cure. So if the disease does progress it will probably require new/better/more medications to treat the pain.

Hopefully other members will share their thoughts and experience. Are you able to share what medications you are taking for your pain now and if they are helping with the pain?

Jump to this post

@johnbishop
Hi John
I actually was diagnosed with Nephropathy about 10 years ago from the nerve test that they do. I was not bad at the time so I didn't take it too seriously. The pain would come & go & it was not a bother. I am so bad now that I had ot go to the Neurologist. I started out with Nortriptilyne & it was helping & I took it for 2 months but then the constipation was so bad that I had to stop. That was the only one that I think helped. The day before I had the bad constipation attack I had been at the ER for abdominal pain bc I am dealing with adhesions due to endometriosis & prior surgery. They gave me a morphine drip & dilaudid & I don't know if in a short time if that could of caused the constipation. Then I went on the Gabapentin for a short time & it was making me to tired so I stopped that. Then they put me on the Cymbalta 30 mg & that did not help so now I am on Cymbalta 60 mg & Gabapentin 200 mg they increased it but I am waiting to see some relief. I'm one day good & one day bad so I have to take one day at a time. Thank you John for all your help.

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 6, 2019
In reply to @tigreyes2004 "@johnbishop Hi John I actually was diagnosed with Nephropathy about 10 years ago from the nerve..." + (show)
@tigreyes2004

@johnbishop
Hi John
I actually was diagnosed with Nephropathy about 10 years ago from the nerve test that they do. I was not bad at the time so I didn't take it too seriously. The pain would come & go & it was not a bother. I am so bad now that I had ot go to the Neurologist. I started out with Nortriptilyne & it was helping & I took it for 2 months but then the constipation was so bad that I had to stop. That was the only one that I think helped. The day before I had the bad constipation attack I had been at the ER for abdominal pain bc I am dealing with adhesions due to endometriosis & prior surgery. They gave me a morphine drip & dilaudid & I don't know if in a short time if that could of caused the constipation. Then I went on the Gabapentin for a short time & it was making me to tired so I stopped that. Then they put me on the Cymbalta 30 mg & that did not help so now I am on Cymbalta 60 mg & Gabapentin 200 mg they increased it but I am waiting to see some relief. I'm one day good & one day bad so I have to take one day at a time. Thank you John for all your help.

Jump to this post

Hi @tigreyes2004 - Were you diagnosed with nephropathy or neuropathy? I started looking into nutrition to help with my symptoms after reading a book by Dr. Terry Wahls - The Wahls Protocol. She has an amazing story of how she helped her MS symptoms using cellular nutrition. You can read more about her here: https://terrywahls.com/about/about-terry-wahls/. You can read my story in an earlier post on Connect and what I found that helps me: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Hoping you find some answers soon that help give you relief.

REPLY
1 reply
Leonard | @jakedduck1 | Sep 6, 2019
In reply to @tigreyes2004 "@johnbishop Hi John I actually was diagnosed with Nephropathy about 10 years ago from the nerve..." + (show)
@tigreyes2004

@johnbishop
Hi John
I actually was diagnosed with Nephropathy about 10 years ago from the nerve test that they do. I was not bad at the time so I didn't take it too seriously. The pain would come & go & it was not a bother. I am so bad now that I had ot go to the Neurologist. I started out with Nortriptilyne & it was helping & I took it for 2 months but then the constipation was so bad that I had to stop. That was the only one that I think helped. The day before I had the bad constipation attack I had been at the ER for abdominal pain bc I am dealing with adhesions due to endometriosis & prior surgery. They gave me a morphine drip & dilaudid & I don't know if in a short time if that could of caused the constipation. Then I went on the Gabapentin for a short time & it was making me to tired so I stopped that. Then they put me on the Cymbalta 30 mg & that did not help so now I am on Cymbalta 60 mg & Gabapentin 200 mg they increased it but I am waiting to see some relief. I'm one day good & one day bad so I have to take one day at a time. Thank you John for all your help.

Jump to this post

@tigreyes2004
Hi there,
Gabapentin is an
Anti-convulsant and they all cause drowsiness. However if you continue with it the drowsiness usually always improves in time. I was on a lot of narcotics for many years and was able to control the constipation.
If the Nortriptyline was helping your constipation should be controllable.
Good luck to you.
Jake

REPLY
1 reply
tigreyes2004 | @tigreyes2004 | Sep 6, 2019
In reply to @jakedduck1 "@tigreyes2004 Hi there, Gabapentin is an Anti-convulsant and they all cause drowsiness. However if you continue..." + (show)
@jakedduck1

@tigreyes2004
Hi there,
Gabapentin is an
Anti-convulsant and they all cause drowsiness. However if you continue with it the drowsiness usually always improves in time. I was on a lot of narcotics for many years and was able to control the constipation.
If the Nortriptyline was helping your constipation should be controllable.
Good luck to you.
Jake

Jump to this post

I find taking the Gabapentin at night helps bc then I'm not tired the next day. I'm only on 200 mg right now. Thank you Jake.

REPLY
tigreyes2004 | @tigreyes2004 | Sep 6, 2019
In reply to @johnbishop "Hi @tigreyes2004 - Were you diagnosed with nephropathy or neuropathy? I started looking into nutrition to..." + (show)
@johnbishop

Hi @tigreyes2004 - Were you diagnosed with nephropathy or neuropathy? I started looking into nutrition to help with my symptoms after reading a book by Dr. Terry Wahls - The Wahls Protocol. She has an amazing story of how she helped her MS symptoms using cellular nutrition. You can read more about her here: https://terrywahls.com/about/about-terry-wahls/. You can read my story in an earlier post on Connect and what I found that helps me: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Hoping you find some answers soon that help give you relief.

Jump to this post

@johnbishop
I was diagnosed with peripheral neuropathy ofin biliteral lower extremities. I thought they were both the same. What is the difference?

REPLY
1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 6, 2019
In reply to @tigreyes2004 "@johnbishop Hi John I actually was diagnosed with Nephropathy about 10 years ago from the nerve..." + (show)
@tigreyes2004

@johnbishop
Hi John
I actually was diagnosed with Nephropathy about 10 years ago from the nerve test that they do. I was not bad at the time so I didn't take it too seriously. The pain would come & go & it was not a bother. I am so bad now that I had ot go to the Neurologist. I started out with Nortriptilyne & it was helping & I took it for 2 months but then the constipation was so bad that I had to stop. That was the only one that I think helped. The day before I had the bad constipation attack I had been at the ER for abdominal pain bc I am dealing with adhesions due to endometriosis & prior surgery. They gave me a morphine drip & dilaudid & I don't know if in a short time if that could of caused the constipation. Then I went on the Gabapentin for a short time & it was making me to tired so I stopped that. Then they put me on the Cymbalta 30 mg & that did not help so now I am on Cymbalta 60 mg & Gabapentin 200 mg they increased it but I am waiting to see some relief. I'm one day good & one day bad so I have to take one day at a time. Thank you John for all your help.

Jump to this post

@tigreyes2004 I take a few meds that can be constipating. I have a history of intestinal surgeries, peptic ulcers and for adhesions. I've gone to the ER several times for bowel obstruction, so anytime my stomach hurts, my first thought is, not again!

I take a tablespoon of Lactulose ( it comes with various names), and I have good bowel movements as a rule. If I can't have one, I take a little more Lactulose. I actually like the flavor, but my brother, who has less than 10% liver function, has to take a larger dose several times a day, and hates it. I've found that if I eat a small piece of chocolate before I take it, it enhances the flavor.

The Lactulose I take is a prescription, so it's paid for by Medicare and a supplement. Of course, there are many constipation treatments out there.

Jim

REPLY
2 replies
jeffrapp | @jeffrapp | Sep 6, 2019
In reply to @jakedduck1 "@jeffrapp Hi there Jeff, I’ve had Neuropathy about 42 years. It’s believed to have been caused..." + (show)
@jakedduck1

@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

Jump to this post

Hi Jake
Thanks so much for your reply.
I did have subtle neuropathic symptoms before my cancer diagnosis, but I also had the cancer before it was diagnosed. I had a CT scan as part of a work up for BPH (large prostate). The finding of a lymphoma was "incidental", as I had no symptoms from that. I'm sure (but nobody else is) that the neuropathy is related to the lymphoma.
Most of the people who have neuropathy as part of a cancer diagnosis is because of chemotherapy, which I never had. So mine remains idiopathic.
Your assumption about SFPN not showing up on an EMG/NCS is correct. My EMG was normal.
So far, my symptoms are all sensory. I can't wear shoes and socks, even in the winter. Bummer!
I have tried all sorts of topical stuff (some recommended on this forum) but nothing really works.
My diet is "pretty good", sort of Mediterranean, which means too much pasta.
I also drink "too much" (about 3 drinks a night, but I used to do more). I tried abstaining for about 3 months, but I kept on getting worse anyway. I figured I might as well suffer tipsy rather than sober. I'm still trying to find out whether anyone thinks there is a definate connection between my drinking and PN, but I get all sorts of maybe answers. I don't think anyone really knows.
The one thing that makes me feel better is warm weather.
Thanks for your kind words, and good luck to you too. Getting old is not for sissies.
Jeff

REPLY
4 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 6, 2019
In reply to @tigreyes2004 "@johnbishop I was diagnosed with peripheral neuropathy ofin biliteral lower extremities. I thought they were both..." + (show)
@tigreyes2004

@johnbishop
I was diagnosed with peripheral neuropathy ofin biliteral lower extremities. I thought they were both the same. What is the difference?

Jump to this post

@tigreyes2004 - Nephropathy is a disease of the kidneys caused by damage to the small blood vessels or to the units in the kidneys that clean the blood. Peripheral neuropathy is damage to the nerves outside of the brain and spinal cord (peripheral nerves), often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body. More information here:

Peripheral neuropathy
-- https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

Diabetic nephropathy
-- https://www.mayoclinic.org/diseases-conditions/diabetic-nephropathy/symptoms-causes/syc-20354556

REPLY
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