Mayo Clinic Connect
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.
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
Liked by Lisa Lucier
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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..
So sorry hotfoot ! That's a difficult situation. Peggy
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
@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.
I will confess that my favorite beverages are Diet Mountain Dew, Diet Coke, Coffee with Almond milk and equal. I make myself drink some Evian water when I feel dehydrated. Caffeine is my crutch – everybody gets to have one or two. Without caffeine, I would fall sleep and never get up again. Peggy
I feel the same way! The gabapentin makes me so tired that the coffee/tea is what keeps me moving forward.
Hello! Does anyone follow a special diet (i.e., keto, paleo, anti-inflammatory)? If so, do you think it has any positive effect on your neuropathy symptoms?
Hi @klro0001, there is another discussion for the same topic where your post will receive more visibility. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where you can meet other members and learn what helps them.
> Groups > Neuropathy > Eliminating Foods for Neuropathy pain
I found a great book related to nutrition and cellular health that you might find helpful. It's by Dr. Terry Wahls – The Wahls Protocol.
Have you tried any diet and found it helpful?
Thanks @johnbishop! I didn’t know this was already being discussed. At this point, I just have odd sensations and no pain. After doing some research, I decided to try the keto diet. I’ve been on it for a month. Sensations are still there and I’ve lost 12 pounds that I did not want to lose.😐 I guess I’m trying to hear positive and/or negative experiences from actual people who are currently living with nerve issues. Thanks again for your help and I’ll check out discussion that you referenced above.
Liked by John, Volunteer Mentor
Hi Kia, hope you find some answers that help. I think diet plays a part in a lot of autoimmune diseases but figuring it all out is another problem ☺
Yes, figuring it all out is challenging! Thanks for the book reference. I plan to check it out at the local library when I return from my trip.
I decided last week to limit my caffeine intake. It's hard to give up that second cup of coffee in the morning. That should have some effect on my frequent bathroom trips. I don't remember if caffeine has any connection to neuropathy, but I won't complain if it does.
I have a list of medical issues that are potentialy related to my autonomic neuropathy. One is trouble swallowing. I have to chew a lot to puree my food enough so it will go down. Every swallow stops at the valve that's supposed to open automatically, so meals are usually pretty slow. I'm still chewing long after my wife is finished. It's called esophageal dysmotility. I'm not supposed to drink carbonated beverages, and I'm not supposed to use a straw because it propels the liquid to the back of my mouth too fast.
I'm not on a diet, but there are certain foods that I try to avoid. Bread is the worst. It helps if it's toasted, so it doesn't gum up in my esophagus. I really like steak, but it takes so long to chew it up enough, and I'm finding that I get tired of chewing, so I just give up and put the rest of it in the fridge and have it as a snack or with a meal. Back a couple of years ago when I had the swallowing tests, I didn't have any problem with drinking, and used liquids to help get the food moving along. But now I have trouble with liquid as much as solids.
I also have double vision, tinnitus, urinary issues and muscle weakening. I'll be walking around the yard and out of the blue my left knee just turns to jello and I fall. The last time it happened, I was going down the stairs off the deck. Fortunately I was holding on to the railing and just sat down unexpectedly.
If I remember correctly, there are lots of kinds of neuropathy, and each neuropathy can affect each person differently. It's a complicated journey finding what things will give us relief from whatever neuropathic symptoms we have. It has helped to read what various people do to cope. And I've found that knowing I'm not alone and I'm not a freek means a lot, and the best support I've found is here in Mayo Connect. I hope it helps you as much as it has me.
Liked by John, Volunteer Mentor, johnhans, Lisa Lucier, klro0001
@klro0001 @jimhd @johnbishop – just wanted to let you know I moved the discussion started on Neuropathy and Diet here to this existing discussion, "Eliminating Foods for Neuropathy pain," a discussion johnbishop mentioned, so that you can connect with those talking about this topic and they can also discuss what you've posted recently on it. Perhaps members like @somisgirl @pfbacon @hotfooted @avmcbellar and others can share about whether they have followed a special diet expressly to help with neuropathy, @klro0001.
Liked by John, Volunteer Mentor, klro0001
No. I'm hypoglycemic, I've been eating the medical diet for hypoglycemia since 1987. I wouldn't mess with it. Peggy
This is something I've wondered about… I watch my carb intake closely, taking less than 45 per meal and always including some good fats, like butter, olive oil, avocados, mayonaise.. well, those are the good ones in my book anyway.. My doctor gave me a list of foods with the carb counts and I choose what I eat from the lower count things. BUT, when I have too many carbs my feet will burn and toes swell like sausages.. I'm always open to learning more about what can keep the hurt away.. Suggestions, please?
I only eat chicken or salmon with organic green beans or organic broccoli or organic cabbage or cauliflowers. Eat very low carbs or no carbs at all. It helps my toes, under my toes and my right leg and my left leg has some neuropathy, but not that much. I've noticed that if I eat practically any carbs my neuropathy starts to act up. Everyone is different, but that's what I've noticed with me. I fry up my veggies most of the time with olive oil to get my healthy fats in. I put organic flax oil in my organic oatbran and organic oatmeal with organic flax meal, organic hemp protein powder from Nuvina. I order the powder from Vita-cost. com. I also have organic flax milk too. That's where I get my carbs. I only use 1/4 cup organic oatbran or oatmeal because of the carb content. I hope this helps.
Liked by John, Volunteer Mentor, Lisa Lucier
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