Living with Neuropathy - Welcome to the group

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?

@lois6524

gabapentin is one of those — you must wean yourself off gradually or it could cause a seizure –it is essentially an anti-seizure med, but doctors have found it works for neuropathic pain for some people

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@avmcbellar and @lois6524, Gabapentin was also prescribed for my friend with cancer for nerve pain and we were thankful that it was one of two that gave her most relief.

Liked by avmcbellar

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hi @fiesty76, yes Turmeric helps in many aspects. It is a blood thinner therefore allowing the blood to better circulate to help with pain. Fish oil is another blood thinner. I take it as well because salmon contains ALA and ALA helps some people with their neuropathy. Since you take aspirin be aware that vitamin E is also a blood thinner. PLAVIX is classified as an anti platelet medication which works differently from a blood thinner. Ask your doctor for any concerns you may have. All doctors ask if any supplements are taken for a reason. Some supplements can cause a synergetic reaction with a medication.

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@avmcbellar, I appreciate your sharing this information. I was also prescribed and take both fish oil and vitamin E but didn't know either of them also were blood thinners. Thanks, too, for the added information for Plavix and its being classified as an anti platelet med which works differently. Need to read more about it and also ask docs about the use of all three of these next visit. I'm wondering if those are also adding to my very frequent and easy bruising? Just thought it mostly age and the use of Plavix. Thank you.

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@fiesty76 you’re welcomed. Since you were prescribed the supplements ask the reason why. I don’t know if you are taking prednisone, a corticosteroid, but that will cause easy bruising. Talk to your physician or your pharmacist as to the expectations of supplements and medications. Many can have side effects along with benefits. I always research before making the decision of what is right for me.

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@amvcbellar, Yes, I was prescribed fish oil and vit E along with Lipitor several years ago for high cholesterol. Next was the stroke and carotid surgery and cardiologist prescribed Amlodipine, Plavix and baby aspirin; I stopped Metformin for prediabetes and that stopped the nausea but not wt loss. The nephrologist told me to stop all NSAIDS (Advil had been my otc pain killer), to Tylenol when needed and to lower vit C intake…no scripts for kidney…and little other info, alas. Also told to take multi-vit, vit D3, and calcium for osteoporosis along with Reclast infusion1/yr of osteo. Much more info than another would want to read…vbg

Until Meformin, I'd never questioned labs or docs instructions and had presented all with list of medications. The meds and otc supplements list is long and I wonder how closely each doc considers combined impact. Yes, meds can have adverse effects with one another or the diagnosed condition. I need to do more research and add to questions list for the next docs' visits. Thank you for your information and for taking your time to enlighten me!

Best to @colleenyoung for starting this group and directing all other Connect forums. Like Dr. Fauci, who reports little sleep during this time of Covid, I doubt our dear Director is taking as much time for herself as would be best for her. I so appreciate the information and support Mayo sites have given me and others. Thank goodness for this trusted resource!!! Hope all of our participants are staying well and safe.

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@fiesty76

@amvcbellar, Yes, I was prescribed fish oil and vit E along with Lipitor several years ago for high cholesterol. Next was the stroke and carotid surgery and cardiologist prescribed Amlodipine, Plavix and baby aspirin; I stopped Metformin for prediabetes and that stopped the nausea but not wt loss. The nephrologist told me to stop all NSAIDS (Advil had been my otc pain killer), to Tylenol when needed and to lower vit C intake…no scripts for kidney…and little other info, alas. Also told to take multi-vit, vit D3, and calcium for osteoporosis along with Reclast infusion1/yr of osteo. Much more info than another would want to read…vbg

Until Meformin, I'd never questioned labs or docs instructions and had presented all with list of medications. The meds and otc supplements list is long and I wonder how closely each doc considers combined impact. Yes, meds can have adverse effects with one another or the diagnosed condition. I need to do more research and add to questions list for the next docs' visits. Thank you for your information and for taking your time to enlighten me!

Best to @colleenyoung for starting this group and directing all other Connect forums. Like Dr. Fauci, who reports little sleep during this time of Covid, I doubt our dear Director is taking as much time for herself as would be best for her. I so appreciate the information and support Mayo sites have given me and others. Thank goodness for this trusted resource!!! Hope all of our participants are staying well and safe.

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Hi @fiesty76. We are all here at the Mayo Clinic discussion to help give you information from our experiences. I am a firm believer in questioning physicians. They can make better decisions for treatments with more accurate information.
Dialysis for medications takes place in either the kidneys or liver. The physician got you off certain medications to avoid dialysis in the kidneys in attempt to lessen the work load of the kidneys. Can you drink more water to flush out the kidneys? I don’t know if you have a water restriction with your diet? My 90 year old mother was diagnosed with renal disease stage 3. After many months of drinking 8 glasses of water daily, her diagnosis was no longer. She also had prediabetes but unfortunately later developed diabetes and was given an oral medication. She followed my instructions to control her diabetes through diet and exercise. With the results of her hemoglobin A1C, her physician discontinued the oral medication for diabetes. She continues to lose weight which also lowers her hypertension diagnosis. Through diet and exercises she is able to manage her cholesterol without any medication. Following a diet and exercise regiment is difficult but the benefits can be numerous. I like trying to solve medical issues with foods first, If possible, rather than medications because I don’t like dealing with the adverse affects.

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Hi, I’m so glad to have found this support group! I have recently been diagnosed with idiopathic small fiber neuropathy. In February of this year I realized my feet were falling asleep unusually quickly and often. They felt numb without my noticing any stage of tingling. Then one day my hands went numb and that’s when I called the doctor. I’m seeing a neurologist who based his diagnosis on skin biopsies.

Is it common to have significant fluctuations in symptoms? Some days I have only mild tingling in fingertips and toes. Other times I may have several days in a row of severe pain and/or numbness with sleepless nights. A friend commented that the flare-ups seem to happen after days when I’m busy on my feet a lot. Can that trigger flare-ups?

I’m just researching treatments-medications, etc. One especially bad night I tried my home tens unit which turned out to be very helpful. Has anyone tried elevating their legs for milder pain relief? I’m doing that on short breaks during the day and trying to decide if it’s worth spending money on a special pillow just for that purpose. Comments? I would be grateful for any replies.

Liked by avmcbellar

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@sprightly

Hi, I’m so glad to have found this support group! I have recently been diagnosed with idiopathic small fiber neuropathy. In February of this year I realized my feet were falling asleep unusually quickly and often. They felt numb without my noticing any stage of tingling. Then one day my hands went numb and that’s when I called the doctor. I’m seeing a neurologist who based his diagnosis on skin biopsies.

Is it common to have significant fluctuations in symptoms? Some days I have only mild tingling in fingertips and toes. Other times I may have several days in a row of severe pain and/or numbness with sleepless nights. A friend commented that the flare-ups seem to happen after days when I’m busy on my feet a lot. Can that trigger flare-ups?

I’m just researching treatments-medications, etc. One especially bad night I tried my home tens unit which turned out to be very helpful. Has anyone tried elevating their legs for milder pain relief? I’m doing that on short breaks during the day and trying to decide if it’s worth spending money on a special pillow just for that purpose. Comments? I would be grateful for any replies.

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Hello @sprightly, Welcome to Mayo Clinic Connect. I've had idiopathic small fiber peripheral neuropathy for over 20+ years but only bothered to get a diagnosis 4 years ago. There are a lot of activities that seem to make it worse and also some foods can trigger flares. There is another discussion we started to share the different member journeys with neuropathy that you might be interested in reading and learning what has been shared.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

There is also a discussion where members share ideas on treatments — Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

In addition to small fiber PN, I also have lymphedema and have to wear compression socks, I do think elevating the legs helps so one of things that has helped me is just to place a pillow under the mattress at the bottom of the bed to elevate the legs slightly. I think you probably wouldn't need to buy a special pillow but it may make it easier for you.

Do your legs swell during the day from standing or walking?

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I am new with this group. Interested in learning more about living with periipheral neuropathy.

Daisy

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@madsoann8

I am new with this group. Interested in learning more about living with periipheral neuropathy.

Daisy

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Good Evening @madsoann8. Welcome to Connect. Have you received a diagnosis of PN or Peripheral Neuropathy? Are you currently taking advantage of any treatments or medications recommended by your medical providers?

Here are some stories by Connect members who have encountered Peripheral Neuropathy.
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
And these ideas might help get you started on some ways to reduce the pain of SFN, small fiber neuropathy.
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/
Just take a look. Knowledge is power.

May you be safe and protected.
Chris

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@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

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@avmcbellar

Hi @fiesty76. We are all here at the Mayo Clinic discussion to help give you information from our experiences. I am a firm believer in questioning physicians. They can make better decisions for treatments with more accurate information.
Dialysis for medications takes place in either the kidneys or liver. The physician got you off certain medications to avoid dialysis in the kidneys in attempt to lessen the work load of the kidneys. Can you drink more water to flush out the kidneys? I don’t know if you have a water restriction with your diet? My 90 year old mother was diagnosed with renal disease stage 3. After many months of drinking 8 glasses of water daily, her diagnosis was no longer. She also had prediabetes but unfortunately later developed diabetes and was given an oral medication. She followed my instructions to control her diabetes through diet and exercise. With the results of her hemoglobin A1C, her physician discontinued the oral medication for diabetes. She continues to lose weight which also lowers her hypertension diagnosis. Through diet and exercises she is able to manage her cholesterol without any medication. Following a diet and exercise regiment is difficult but the benefits can be numerous. I like trying to solve medical issues with foods first, If possible, rather than medications because I don’t like dealing with the adverse affects.

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@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.

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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.

Liked by fiesty76, HankB

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@avmcbellar

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.

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@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

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@jimhd

@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

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@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.

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