Eliminating Foods for Neuropathy pain

Posted by avmcbellar @avmcbellar, Jul 20, 2019

I have tried doing without certain foods and drinks containing caffeine and have discovered it helps me to lower my neuropathy pain to a level that is tolerable. It is not easy to eliminate chocolate, tea, and coffee from my diet.

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Hi, @avmcbellar - I think that @vradifegari @artscaping @rwinney @manassen1 @wilcy also may be interested in joining in with their thoughts on eliminating foods or beverages to reduce neuropathic pain.

avmcbellar, wondering if in addition to reducing caffeine if you've found any other connections between what you eat or drink and your neuropathy pain?

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Hi @lisalucier, I have been not been eating chocolate or drinking caffeinated drinks like hot tea or coffee now for a week. I never consume alcohol. So far I have noticed a slight improvement with neuropathy pain. The hot feeling has decreased in intensity. Not sure if my diet is the cause. Next, I will try a mixture of essential oils and exercise to see if it helps. Currently, I am taking Lion’s Mane Mushroom supplements for neuropathy pain benefits. The bottle offers 2 months supply. I will take it long term to determine if it helps.

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Have started vaping with medical marijuana! Has not helped! Compression socks killed me!

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On rare occasions, I wake up feeling no pain - I wonder what I did right ! I try to correlate it to anything I did or consumed - to no avail. I am very regular about eating and working out, I do the same things every day, take the same meds, eat and drink the same things ... My doctors have explained that my nervous system is dying, it doesn't go smoothly, or quietly, it writhes unpredictably like a crocodile doing a death-roll. I plateaued for awhile, now the pain and numbness are advancing again. Peggy

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That's been my experience Peggy. The waxing and waning is something my doctors can't explain which means they don't know. I can't believe they told you your nervous system is dying when they don't know why. How depressing is that? I wonder if any other doctors has said this to their patients...and if it is true. So what happens when it's dead? Did they give you an end of the road scenario? You should ask if they've ever treated anyone who's died from SFN. From what I've read, people don't die from SFN.

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I appreciate my doctors telling me what's going to happen - I kept after them until I got answers. Information on websites didn't mention anything past the very beginnings (needle stick feelings and numbness). As we get older, parts of our body wear out and stop working; sometimes it's the kidneys, liver, or heart that give out, or brain (Alzheimer's et al.). With me and 24 million other Americans, it's the nervous system. Eventually, the pain gets so bad that nothing will kill it - I asked the pain doctor if people with neuropathy have high suicide rates, he said 'yes, very high'. My neurologist said that the nervous system dies at the extremities first, then continues dying toward the center of the body - eventually, it stops the lungs and heart. She also said that higher and higher doses of medicines stop the heart. She didn't say any specific medicine. I don't know of any medical research company who is looking for a cure for neuropathy. I don't find any of this depressing, just interesting. I accepted long ago that I will die some day, like everyone else. I'm 68, I've had a rich, full life, my daughter is grown, married, has a good career and friends, doesn't need me. My husband will be lonely - I'm sorry for him, but he's older than me, has serious health problems, he will probably join me soon. There are a couple of things on my bucket list that I didn't get to ... ah well. Mick Jagger said "we don't always get what we want". My friend Jane added "We don't always get what we need - we get what we get". I can spend what's left of my life sniveling, or having a good time with friends and pulling together all the comedy I've written into a book so they can enjoy it after I'm gone. I'm not going to any more doctors or doing any more tests or chasing down any new health issues; I don't want to waste any time. Peggy

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@pfbacon

I appreciate my doctors telling me what's going to happen - I kept after them until I got answers. Information on websites didn't mention anything past the very beginnings (needle stick feelings and numbness). As we get older, parts of our body wear out and stop working; sometimes it's the kidneys, liver, or heart that give out, or brain (Alzheimer's et al.). With me and 24 million other Americans, it's the nervous system. Eventually, the pain gets so bad that nothing will kill it - I asked the pain doctor if people with neuropathy have high suicide rates, he said 'yes, very high'. My neurologist said that the nervous system dies at the extremities first, then continues dying toward the center of the body - eventually, it stops the lungs and heart. She also said that higher and higher doses of medicines stop the heart. She didn't say any specific medicine. I don't know of any medical research company who is looking for a cure for neuropathy. I don't find any of this depressing, just interesting. I accepted long ago that I will die some day, like everyone else. I'm 68, I've had a rich, full life, my daughter is grown, married, has a good career and friends, doesn't need me. My husband will be lonely - I'm sorry for him, but he's older than me, has serious health problems, he will probably join me soon. There are a couple of things on my bucket list that I didn't get to ... ah well. Mick Jagger said "we don't always get what we want". My friend Jane added "We don't always get what we need - we get what we get". I can spend what's left of my life sniveling, or having a good time with friends and pulling together all the comedy I've written into a book so they can enjoy it after I'm gone. I'm not going to any more doctors or doing any more tests or chasing down any new health issues; I don't want to waste any time. Peggy

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@pfbacon I like your attitude.. We do what we can to get comfort and less pain, then just get on with living life and enjoying it for as long as it lasts. At the present, I'm using up more of my own by helping care for my dying son.. but until a month ago I was at my own home and my husband was helping care for me.. My son is an amputee, has both diabetes and parkinson's, has been on dialysis for 7 years.. Now he says he's ready to end dialysis and just let go of his stay here.. It's wearing us all out, trying to take care of him, but we are in it for the long haul.. He is also narcissistic and that makes it very difficult for his caregivers.. Right now it's taking 3 of us to keep him going.. and he is still going to dialysis, but like yesterday and last week, he skips a visit, then has to make up for it with 2 days in a row.. This is not an easy road to follow for any of us.. Meanwhile, my husband is home alone and in another state, while I'm living here and losing more of myself everyday.. Son won't go to a nursing home, or use hospice... prefers his mom and daughter and the next door neighbor doing everything for him.. Me.. I just want to go home to my dear husband.. It isn't easy, by any means..

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So sorry hotfoot ! That's a difficult situation. Peggy

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If any of your doctors give you a more encouraging prognosis than mine did, please share - I would love to hear something more cheerful ! Peggy

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@hotfooted

@pfbacon I like your attitude.. We do what we can to get comfort and less pain, then just get on with living life and enjoying it for as long as it lasts. At the present, I'm using up more of my own by helping care for my dying son.. but until a month ago I was at my own home and my husband was helping care for me.. My son is an amputee, has both diabetes and parkinson's, has been on dialysis for 7 years.. Now he says he's ready to end dialysis and just let go of his stay here.. It's wearing us all out, trying to take care of him, but we are in it for the long haul.. He is also narcissistic and that makes it very difficult for his caregivers.. Right now it's taking 3 of us to keep him going.. and he is still going to dialysis, but like yesterday and last week, he skips a visit, then has to make up for it with 2 days in a row.. This is not an easy road to follow for any of us.. Meanwhile, my husband is home alone and in another state, while I'm living here and losing more of myself everyday.. Son won't go to a nursing home, or use hospice... prefers his mom and daughter and the next door neighbor doing everything for him.. Me.. I just want to go home to my dear husband.. It isn't easy, by any means..

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@hotfooted I understand your situation. I was in a similar situation with my elderly disabled parents who had promised each other never to go into a nursing home, and after my mom fell and broke her pelvis, foot and ankle, I had to help take care of them both and I was never home. My dad also broke a hip and both were in wheelchairs. I would hire caregivers when I could find them and most couldn't pass a background check, and the care giving companies didn't want to service this rural area, and I had to relieve the hired help, and handle all the things an employer has to do, and my parents didn't want to spend money on their care, so we were limited to their social security for resources. The nursing home had decreed 24 hour care was mandatory and hence the need to pay for that, and that is more than one person can do without help. We tried to find assisted living, but they rejected my dad, so the only other option was an in home caregiver situation. I didn't get help from siblings, so all of it fell on me, and during this time, my spine condition caused constant pain. I needed surgery, and saw 5 local surgeons, none of which would help me, but I helped get my mom through ankle surgery that was needed because her tendons shortened after the fractures healed. My dad was an end stage heart patient and became an invalid, and I was exhausted all the time and grieving his loss. Essentially this was just like a nursing home, and I was doing necessary things that a daughter shouldn't be doing for her dad. When he did pass, I finally could take care of my own health issues, and that is when Mayo called with an appointment for a spine consult. I had surgery at Mayo, and rested and healed. I was in a neck brace for 4 months and couldn't drive and I heard lots of complaints about how much longer would it be until I could drive again and come back to all the chores and responsibility that the others didn't want to do. My parents just expected me to give up my life for them, and didn't expect this of my siblings. My siblings are a lot like your son, and they put themselves first, and step back so that I will need to take responsibility. My parents didn't accept the realtity of the situation or that they we unable to take care of themselves. Some of that was because my dad had a traumatic brain injury in his 60's and lost the ability for good judgment and reasoning, but he thought he was fine. My mom is still living, and doesn't drive, but she is able to live on her own now and stays in her wheelchair. I still do things for her and take her to appointments, but I can go back home. This takes over your life, and there is very little left over, and I still have all the responsibility. Still with as hard as all this was and still is, I would do it again. I need to be able to live with myself, and I wouldn't like myself if I acted like my siblings. Since my surgery at Mayo a couple years ago, I am doing fine, and I'm here is you need to talk. These were the hardest years of my life.

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