Living with Neuropathy - Welcome to the group

@madsoann8 Hello Daisy and welcome to Connect. You sure came to the right place for support, encouragement and experience. Do you mind sharing a bit about yourself... have you been diagnosed yet, how long have you been suffering, what type of peripheral neuropathy do you struggle with? I myself have Small Fiber Progressive Polyneuropathy from B12 deficiency and have struggled for 4 years. The key to survive PN (in my opinion) is to gain as much knowledge as possible about your disease, be your own advocate, persevere as best you can daily with positivity, follow a supplement protocol, eat healthy and keep moving your body as much as possible, and use heat/ice. Then of course there would be various medications, procedures, etc.. You will hear from others soon and our Mentor @johnbishop will get you started with helpful threads or @artscaping. Thanks for joining and I hope you find Connect to be a helpful place to learn how to live with Peripheral Neuropathy. Be well.
Rachel

@avmcbellar, Thank you for your response and suggestions. When I was diagnosed with pre diabetes and a few months later, stage 3 chronic kidney disease, (ckd), the ckd was the scariest diagnosis I'd yet received. It took 4 requests to primary and kidney docs to get physician referral for ins. coverage for dietitian. Instead of printing out long lists of rec'd and avoidance foods for each, his combined diet saved me hours of meal planning and along with exercise, I've been able to attain an A1c of 5 (normal) and much improved kidney lab reports.

So heartening that your mother's condition improved by drinking more water. I watch my lab values closely and drink a 8-10 glasses of water, unsweetened tea and coffee daily. Before this, I'd been one who "ate to live". Now I've become a diet "foodie" and live to create new diet appropriate recipes. Smiles

Thankful that I never worried about being overweight, the undiagnosed, unimproved 30 lb weight loss over many months has been quite worrisome. Some eat more when stressed; I lose my appetite and have to force myself to eat but have to watch carbs and other foods that would add pounds. I couldn't agree with you more that food selection is the best food of choice when possible. Thanks again.

Hi @fiesty76 keep up the good work with your diet. My mother grew up on the Mediterranean diet. It was choosing low carb foods that made the difference for her. She drinks mainly water. Occasionally she likes to drink herbal teas that she grows herself as a hobby. She drank no caffeine so no coffee or black tea. I believe water is best too. I do not have caffeine either. There is a coffee substitute made from roasted chicory and barley which we both enjoy. My grandmother drank it also. No caffeinated drinks for her either. I believe iced black tea may affect the kidneys. I do not know how much you drink but you may want to research the matter. Having a healthy diet along with exercises can make all the difference. Luckily you have the interest in foods to make your search easier. Wish you well.

@avmcbellar @fiesty76

Because of the hours I put in working outside all spring and summer, I find it much easier to drink enough water. I always have a water bottle in one of the pockets in my tool belt, and usually a second one sitting somewhere in the shade.

Until a few years ago, weight was never a worry for me. But by 2017, I'd gradually added enough pounds that I had worked my way up from a 33" waist to a tight 36". When I was weighed at the doctor's office, I was 208 lbs. So, I stopped picking up cookies and candy all day and started taking smaller portions. I refused to buy 38" pants! After six months, I was back down to 155 lbs, which is the weight I'm most comfortable with, and a size 32. That's what I weighed in college. I was really happy to have gotten my gmi back, and now I'm trying to maintain it. I donated all of the clothes that were too big - doing that reinforced my commitment to maintain a healthy weight - and still had plenty of clothes that I'd not given away.

I'm not Mormon, but I drink as little caffeine as I can. I like my morning cup of coffee, and my wife makes decaffeinated iced tea in the summer. The speech therapist told me that I should avoid carbonated beverages and never to drink from a straw. These and other things make my swallowing issues less problematic. The neurologist and other doctors have said that the esophageal dysmotility, diplopia, balance challenges, decreased muscle tone and a few other things "could be" attributed to autonomic neuropathy. None of them will say that there's a definitive connection.

@sprightly I experience varying levels of pain throughout the day. It hurts to walk very much, hurts more standing still and really hurts when I'm lying down or sitting in my recliner with my feet up.

Using a pillow under my feet in my recliner doesn't help. In bed, I have 2 pillows under my head, one under my feet and one between my knees. I sleep on my side, and if my knees touch it makes my feet hurt, hence the pillow. Sometimes I can sleep with a pillow under my feet, but often that's painful, so I hang my feet off the pillow. If my feet touch each other, I have pain at the point of contact, and contact with the sheets and blankets is painful, as well, so I have a blanket lifter for my feet. Many people have pain relief when their feet are on a pillow. If I'm standing, waiting for the water to get hot in my shower, I have a memory foam cushion, and standing in the shower, I wear flip flops.

We certainly do look for and experiment with a lot of things in this neuropathy journey. We try to pay attention to what helps and to what makes it worse. If you read some of the posts in the discussion that @johnbishop referenced, you'll probably find a bunch of ways people find relief.

Best wishes.

Jim

@jimhd, Like you, I always have water with me while out in my yard and on walks so drinking enough is never an issue for me either. I also refrain from carbonated drinks but hadn't heard the caution of not drinking from a straw before of problems you have swallowing.

Congratulations on bringing your weight back to where you feel most comfortable. Like you, with weight fluctuations...mine due to wt loss vs gain...I have held on to my better weight sized slacks. Have to wear a belt now to "hold up my britches" but am counting on an eventual weight gain to put me back into some of my "waiting favorites". Smiles

Sleep must be a real issue with your neuropathy pain. How true that we try all sorts of experiements to find more comfort or control. Simply knowing that we are not alone on these health journeys makes whatever the primary malady much more doable.

@fiesty76 The reason for not using a straw is that it projects the liquid to the back of my mouth too quickly, so my swallowing process doesn't have time to prepare. The back of my tongue has uncoordinated movement, the top sphincter (valve) is slow to open, the rings that circle the inside of my esophagus fire randomly instead of in order, and then the lower esophageal sphincter doesn't open to empty the esophagus into the stomach until it's decided to cooperate. With all of those possible problems, I have to chew carefully before swallowing anything. It takes about twice as much time to eat than everyone else.

Anyway, that's the long version to answer your question about straws.

Jim

@jimhd, Golly, Jim, you make a complicated process simple enough for even the uninformed to grasp! Thank you. Hard enough to do what comes automatically sometimes, slowing down for random misfires would be trying at best. I've always been a slow eater but not because of needing to chew. As others might suspect, I get carried away with conversations and forget to focus on the plate!! vbg

Hi Jim @jimhd, I certainly can understand what you went through with your weight gain. My husband is still dealing with his. He is working on it slowly with another 20lb weight loss goal to go. Sorry to hear of all your troubles but glad you keep on trying to find resolution. I know NOT using a straw helps with throat or swallowing issues. I noticed I have digestive issues too where food comes back up easier into my mouth plus I get the burning sensation in my stomach. I figured it is due to the hydrochloric acid. For me, eating small meals and alkaline foods to counteract the high acidic foods helps me a lot. I stay away from coffee not only for the caffeine but also for its high acidity. I love coffee too to the point of trying decaf but its high acidity still bothered me. It was not worth it. I rather not deal with the burning and upset stomach. My burning sensation has decreased significantly where I am pain free for a few days. I know which foods to stay away from now. I hope you can find relief. Maybe eating small more frequent meals will help.
As for my neuropathy, the pain does feel slightly less. Pillows do not help. I get the burning and ice cold feeling on my left limbs.. Since I have neuropathy on one side of my body, I can feel the different temperatures....boy is my brain messed up with its messages! It is amazing all the responsibilities our nerves have. Because of a lack of a few nerves, I have many deficits....balance, walking, vision, eating, energy. All those have become more difficult. We take so much for granted.
I also get a lot of “maybe, I don’t know” from doctors. There are so many doctors out there but many don’t know. I have lost confidence in many that is why it is best to be your own advocate. Nothing wrong in researching. I am proud of everyone, including you Jim, for using the Mayo Clinic discussion groups for information to provide better care for themselves. Keep on trying and keep on educating us. Best wishes.

Hello @ladyvanilla, Welcome to Mayo Clinic Connect. Thank you for the private message. I thought I would answer it in the Living with Neuropathy - Welcome to the group discussion so that you can meet other members with neuropathy and learn what experiences they have shared. You mentioned having a family member suffering with neuropathy and you are wondering what the steps are for dealing with the neuropathy. If you click the VIEW & REPLY button at the bottom of this email notification it will take you to the discussion.

I have no medical training or background but I can share my personal experiences with my diagnosis of idiopathic small fiber peripheral neuropathy. The best advice or suggestion I can offer you for your family member is to learn as much as they can about their neuropathy diagnosis and what treatments are available. Coming to Connect is a great start as many members share a common bond of the need to find something that helps with their pain and other symptoms from neuropathy.

DISCUSSIONS:
Let me start by suggesting a few other discussions that you may find helpful. You can also go to the Neuropathy Group page and see the list of all of the discussions under Neuropathy here: https://connect.mayoclinic.org/group/neuropathy/

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/
Small Fiber Neuropathy lecture: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-lecture/

RESOURCES FOR NEUROPATHY INFORMATION:

Neuropathy Commons website: https://neuropathycommons.org/
NIH PN Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet
What Makes Neuropathy Flare up?: https://nervepainguide.org/neuropathy-flare-ups/
Foundation for Peripheral Neuropathy - Living with Neuropathy: https://www.foundationforpn.org/living-well/
Foundation for Peripheral Neuropathy eCatalog of PN articles:
-- https://www.foundationforpn.org/wp-content/uploads/2020/02/01.29.2020-Website-eCatalog.pdf
Dr. Anne Louise Oaklander | Small Fibers, Big Pain || Radcliffe Institute: https://youtu.be/s66LvWQ5Qso

@ladyvanilla are you able to share more about the symptoms that bother your family member the most and what medications they are taking if any?

My husband Bud has suffered a long time with neuropathy.Some nights he can not even sleep. Is there any cure or help for him?