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?

@klro0001

Thank you so much for your kind words. I was eating lunch in my office earlier and I suddenly felt extremely overwhelmed. I’m not experiencing pain at this point, it’s mostly odd sensations and discomfort for now. I feel like all of my days are consumed with thoughts about when severe pain will begin and if/when I’ll have to end my career (and all the stress that goes with that). Anyway, I apologize for the rant. Thanks again for the encouragement.

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Hello. I've been there and your feelings are completely justified. Keep your head up.
All the best,
Rachel

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Concerning problems of people with neuropathy having pain wearing shoes, and sleeping with sheets hurting their toes. Search these three topics for some decent solutions: 1. “blanket support for foot of bed”, and 2. “diabetic shoes”, and 3. “diabetic socks”. Pick one that fits your circumstances, and that you can afford. They work very well for me.

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Hi John, Probably 20 months ago I told my GP that the soles of my feet were hot. He looked at me as if I had 3 heads and said nothing. I thought there was something imagined going on. Power of mind you know. Approx 3 months ago he sent me to EMG clinic and peripheral neuropathy diagnosed. Nerves from ankles down damaged. Mostly left leg. Gabapentin prescribed roughly 1 month ago and I do NOT like it. Lots of side effects. My main concern is wondering what component of this condition might be psychological? Darryl

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@constitution

Hi John, Probably 20 months ago I told my GP that the soles of my feet were hot. He looked at me as if I had 3 heads and said nothing. I thought there was something imagined going on. Power of mind you know. Approx 3 months ago he sent me to EMG clinic and peripheral neuropathy diagnosed. Nerves from ankles down damaged. Mostly left leg. Gabapentin prescribed roughly 1 month ago and I do NOT like it. Lots of side effects. My main concern is wondering what component of this condition might be psychological? Darryl

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Hi Daryl @constitution, Welcome to Connect. I have small fiber peripheral neuropathy but only have numbness for symptoms so there are no drugs that help me. I can understand not liking the side effects. Have you discussed the side effects with your doctor or neurologist? Does the gabapentin help?

I'm not sure peripheral neuropathy has any component that is psychological other than the pain it brings you which is what the drugs are made to help reduce or eliminate. There is another discussion which may be helpful for you to see what others are doing to help with their pain.

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

I posted my story and what has helped me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

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@johnbishop

Hi Daryl @constitution, Welcome to Connect. I have small fiber peripheral neuropathy but only have numbness for symptoms so there are no drugs that help me. I can understand not liking the side effects. Have you discussed the side effects with your doctor or neurologist? Does the gabapentin help?

I'm not sure peripheral neuropathy has any component that is psychological other than the pain it brings you which is what the drugs are made to help reduce or eliminate. There is another discussion which may be helpful for you to see what others are doing to help with their pain.

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

I posted my story and what has helped me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

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Thanks very much for your prompt reply John. I'm sending this from your link because apparently I did not verify my registration on time….and now I have to re=register, or something. If I can get back in, I will check the links you've supplied toute suite, Thx again. Darryl

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@constitution

Hi John, Probably 20 months ago I told my GP that the soles of my feet were hot. He looked at me as if I had 3 heads and said nothing. I thought there was something imagined going on. Power of mind you know. Approx 3 months ago he sent me to EMG clinic and peripheral neuropathy diagnosed. Nerves from ankles down damaged. Mostly left leg. Gabapentin prescribed roughly 1 month ago and I do NOT like it. Lots of side effects. My main concern is wondering what component of this condition might be psychological? Darryl

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@constitution
Hello Darryl,
Side effects often diminish or go away altogether after being on them for awhile. Has the doctor been increasing your dose? If so, that could explain your side effect symptoms. May I ask what side effects your experiencing and your current dose?
Are you getting any relief from the Gabapentin?
Jake

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Hey guys, new this group! Looking for some advice! I’m 46 years old and for the last 4 months I’ve been having burning in my arms and shoulders. In addition I’ve started getting a lot of burning in my calf and upper leg! It’s pretty much all the time ! I’m constantly moving and still have lots of strength in my legs. But they are always burning and then they get a bit tired. It’s all the time at work and when I’m not moving! I’m not a diabetic, don’t smoke, don’t drink and I’m after losing 50 lbs since February 2019! My doctor doesn’t think it’s vascular! I’m at a loss! Looking for some direction! I would appreciate any advice!!! Thanks take care! Fred

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@frederick45

Hey guys, new this group! Looking for some advice! I’m 46 years old and for the last 4 months I’ve been having burning in my arms and shoulders. In addition I’ve started getting a lot of burning in my calf and upper leg! It’s pretty much all the time ! I’m constantly moving and still have lots of strength in my legs. But they are always burning and then they get a bit tired. It’s all the time at work and when I’m not moving! I’m not a diabetic, don’t smoke, don’t drink and I’m after losing 50 lbs since February 2019! My doctor doesn’t think it’s vascular! I’m at a loss! Looking for some direction! I would appreciate any advice!!! Thanks take care! Fred

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Hi Fred and welcome to Connect. You will find great caring, support and advice here with alot of people who share your symptoms and concerns.

First step is visiting a neurologist. It sounds as though you have not yet. There will be a sequence of testing from Nerve Conduction studies and EMG testing to Skin Punch biopsy if necessary. These tests will determine if you have nerve damage aka neuropathy.

If it is neuropathy, we are all quite familiar here. There can be a variety of underlying causes to neuropathy. There are many tests to be conducted to search for an underlying cause. If no cause presents then it would be considered idiopathic. Treatments vary depending on cause.

One step at a time however. My advice is not to get too far ahead of yourself but definitely get moving with a neurologist.

I wish you all the best and please keep up updated with your findings. Hang in there Fred.

Rachel

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@frederick45

Hey guys, new this group! Looking for some advice! I’m 46 years old and for the last 4 months I’ve been having burning in my arms and shoulders. In addition I’ve started getting a lot of burning in my calf and upper leg! It’s pretty much all the time ! I’m constantly moving and still have lots of strength in my legs. But they are always burning and then they get a bit tired. It’s all the time at work and when I’m not moving! I’m not a diabetic, don’t smoke, don’t drink and I’m after losing 50 lbs since February 2019! My doctor doesn’t think it’s vascular! I’m at a loss! Looking for some direction! I would appreciate any advice!!! Thanks take care! Fred

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PS…I join you at 46 with symptoms beginning. Now 49 and happy to help with my experience!

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@frederick45

Hey guys, new this group! Looking for some advice! I’m 46 years old and for the last 4 months I’ve been having burning in my arms and shoulders. In addition I’ve started getting a lot of burning in my calf and upper leg! It’s pretty much all the time ! I’m constantly moving and still have lots of strength in my legs. But they are always burning and then they get a bit tired. It’s all the time at work and when I’m not moving! I’m not a diabetic, don’t smoke, don’t drink and I’m after losing 50 lbs since February 2019! My doctor doesn’t think it’s vascular! I’m at a loss! Looking for some direction! I would appreciate any advice!!! Thanks take care! Fred

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Hi Fred @frederick45, I would like to add my welcome to Connect along with @rwinney and also mention you are not alone with your symptoms. Other members also have similar symptoms and hopefully will be able to share what's helped them. I agree with Rachel that you might want to see a neurologist or see if your doctor will give you a referral to a neurologist so that you have a diagnosis. Have you received any suggestions from your doctor?

Keep up the good work you are doing now with your health and learn as much as you can about your health condition. It's proabably the number one thing you can do as a patient to help yourself.

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Thanks for your help and guidance! I’ll try an get a referral to a neurologist! It gets very frustrating! Thanks again! Take care

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@jakedduck1

@constitution
Hello Darryl,
Side effects often diminish or go away altogether after being on them for awhile. Has the doctor been increasing your dose? If so, that could explain your side effect symptoms. May I ask what side effects your experiencing and your current dose?
Are you getting any relief from the Gabapentin?
Jake

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Jake, Hi. Thanks for getting back. New to Gabapentin. One month. No increases yet. Still 100mg. Going for 1st follow-up next week. All commonly discussed side effects. Drowsiness, dizziness, coordination, strength loss, brain fog, generally slow brain function, general motivation decline. Some pain reduction results from Gabapentin however, also some nights supplementary pain meds needed. I believe this condition is finally going to teach me patience (joking)………………which I've always lacked. D T

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@constitution

Jake, Hi. Thanks for getting back. New to Gabapentin. One month. No increases yet. Still 100mg. Going for 1st follow-up next week. All commonly discussed side effects. Drowsiness, dizziness, coordination, strength loss, brain fog, generally slow brain function, general motivation decline. Some pain reduction results from Gabapentin however, also some nights supplementary pain meds needed. I believe this condition is finally going to teach me patience (joking)………………which I've always lacked. D T

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I always told my mother I did not have patience because I was not a doctor. She never thought that was funny. Congratulations on looking at the bright side of neuropathy.

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@constitution

Jake, Hi. Thanks for getting back. New to Gabapentin. One month. No increases yet. Still 100mg. Going for 1st follow-up next week. All commonly discussed side effects. Drowsiness, dizziness, coordination, strength loss, brain fog, generally slow brain function, general motivation decline. Some pain reduction results from Gabapentin however, also some nights supplementary pain meds needed. I believe this condition is finally going to teach me patience (joking)………………which I've always lacked. D T

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Yikes! That's a lot of side effects for 100 mg!!! I'm so grateful that the only side effect I've really struggled with is insomnia. My doctor was so surprised when I told him that on Friday (30 day check in). He suggested that I switch from taking my meds at night to the morning. I did that Saturday (yesterday) – and Wow! Not a good idea. Initially I had a burst of energy that lasted a couple of hours – and then I did a wild crash and burn. I felt totally zoned out. Definitely could have slept (but didn't). So today I've decided to try taking the meds at dinner time. Hopefully the timing will allow me to get a good night's sleep!

Also – my doctor switched me from 3 – 100 mg capsules to 1 – 300 mg capsule. I know the measure is the same – but I wonder if the 300 mg capsule somehow had a different impact? Thank God I don't have to work until Wednesday so I had a few more days to play with this, and I'll be even happier when my last day of work rolls around on Nov 8th…

BUT – the good news is: 300 mg once a day definitely deals with my pain 🙂

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I'm on Gabapentin & at first it made me so tired I couldn't take it but now I take 300 mg at night & it makes you sleep better & I am on 100 mg in the morning & another in the afternoon. I'm new to this Neuropathy & I have seen no help with the Gabapentin butI am taking Cymbalta with it & it gets me to wear I do function so I guess it helps to a degree. I just don't want to increase it anymore bc if you stopped it suddenly you could have seizures I have been told. Does anyone know a good med that gives relief.

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