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?

@helennicola

Hi Chris, I am feeling much better lately, thank you for asking; my husband’s back surgery went well and he is now walking without a cane. We are going to LA in November, Mt. Washington area, not far from downtown. We are flying (😞). Hope you are well and enjoying the beautiful cooler weather. Helen

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@helennicola
Just wanted to wish you a safe trip. Don’t forget to pack your skateboard, there’s a steep hill there.
Have a blast!!!
Jake

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@helennicola

Hi Chris, I am feeling much better lately, thank you for asking; my husband’s back surgery went well and he is now walking without a cane. We are going to LA in November, Mt. Washington area, not far from downtown. We are flying (😞). Hope you are well and enjoying the beautiful cooler weather. Helen

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@helennicola, Hey there Helen, thanks so much for your reply and for the good news about both you and your husband. Now you can concentrate on living life a bit more enthusiastically. Do you have family in California?

I remember that you wanted to try medical cannabis. Evidently Mount Washington doesn't have its own zip code that I can find. So if you could please tell me what larger cities are near you and their zip codes if you have them, that would be helpful.

Was that a not so happy face you placed next to flying? For eleven years I was flying on business frequently. I can handle a maximum of three hours and then I want to be on the ground. When I lived in Hawaii and traveled across two oceans to Europe, it was just plain gruesome.

Are you still comfortable with your medication choices? Is that why you are feeling much better?
May you be safe and protected from both inner and outer harm. Chris

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@johnbishop

Hi @lisie, Welcome to Connect. I've have idiopathic small fiber peripheral neuropathy for 20+ years but I only have numbness and no real pain in both feet and slightly above the anklles. I shared my story earlier in a post here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

It can wear you down if let it get to you. The one thing that helps me when I'm having a bad day is to try and focus on something else as hard as that might sound. Sometimes it's just looking around or outside through the window at the bird feeder and enjoying whatever is there. It sounds like your neuropathy is also idiopathic. Are you able to share a little more about your neuropathy diagnosis and what medications you are taking if any?

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Hi John
Are there different types of neuropathy? Are there stages of Neuropathy.?

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@tigreyes2004

Hi John
Are there different types of neuropathy? Are there stages of Neuropathy.?

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Hi @tigreyes2004, I'm by far no expert and have no medical background or training but there are many different types of neuropathy. I'm not sure if there are specific stages of neuropathy but it does get worse over time and there is no real cure that I have found. Some types of neuropathy, like diabetic neuropathy may slow down or get better depending on how well you able to control what is causing it. I think if it's neuropathy caused by nerve damage and you can repair the nerve damage through surgery, you may be able to reverse the symptoms but that's just an opinion. Here is some information that may be helpful.

NIH — Peripheral Neuropathy Fact Sheet
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

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@johnbishop

Hi @tigreyes2004, I'm by far no expert and have no medical background or training but there are many different types of neuropathy. I'm not sure if there are specific stages of neuropathy but it does get worse over time and there is no real cure that I have found. Some types of neuropathy, like diabetic neuropathy may slow down or get better depending on how well you able to control what is causing it. I think if it's neuropathy caused by nerve damage and you can repair the nerve damage through surgery, you may be able to reverse the symptoms but that's just an opinion. Here is some information that may be helpful.

NIH — Peripheral Neuropathy Fact Sheet
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

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Thank you John.

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I’m 56 years old and have Peripheral Neuropathy, Fibromyalgia and Gout throughout my body. I hurt all the time. I don’t think my Physician is listening to me I take Tramadol, Flexeril, Celebrex, Allopurinal , ambien and Xanax. I’ve been on every meditation with no avail. My regime helps but I have such chronic pain with anxiety and insomnia. I hate all of this. Help me. Please

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Hi @donnalujan11 and welcome to Connect. It must be so difficult to have such severe pain and having no success in finding a treatment. You may have noticed I moved your post to this discussion on Neuropathy so that you can connect with others who have similar experiences such as @johnbishop @tigreyes2004 and @artscaping. Simply click view and reply in your email notification to get to your post.

Here is a discussion on Fibromyalgia that I think you may find helpful:
> Groups > Chronic Pain > Feeling at my wits end with Chronic Pain and Fibromyalgia
https://connect.mayoclinic.org/discussion/feeling-at-my-with-end-with-chronic-pain-and-fibromyalgia/

Back to you @donnalujan11 if you are comfortable sharing more of your story, how long ago did your symptoms start?

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@donnalujan11

I’m 56 years old and have Peripheral Neuropathy, Fibromyalgia and Gout throughout my body. I hurt all the time. I don’t think my Physician is listening to me I take Tramadol, Flexeril, Celebrex, Allopurinal , ambien and Xanax. I’ve been on every meditation with no avail. My regime helps but I have such chronic pain with anxiety and insomnia. I hate all of this. Help me. Please

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Good Morning @donnalujan11. Welcome to Connect. Connect is composed of patients, caregivers and fellow sufferers. My background includes a lack of affinity for medical issues until I became one. Would you be able to tell me a little more about you? For example, what medical diagnoses have you received? How long have you been living with pain? What kind of medical providers do you see regularly? Thanks…. you may meet other mentors and that information would be helpful. Be relieved of pain today, if only for a little while. Chris

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Hello @donnalujan11, I would like to add my welcome to Connect along with @ethanmcconkey, @artscaping and other members. Sorry to hear you are in such pain. It sounds like you have a lot going on with your health and I know it can be frustrating when nothing seems to help. I have no medical training or background but I'm wondering if there is a possibility of drug interactions since you are on quite a few different ones and I've heard of some drug interactions with Flexeril (cyclobenzaprine) which is a muscle relaxant/. I know a lot of us, including myself do not ask enough questions when discussing our treatment with our doctors. Have you discussed your medications with your doctor?

Flexeril Drug Interactions — https://www.drugs.com/drug-interactions/cyclobenzaprine,flexeril.html

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Actually, I have. I’ve been a medical assistant for 25us years. When they try to wean me off of the flexeril. It’s awful and the rest of the regime won’t cover the out break pain. Thank you so very much. I’m really trying to figure this out.

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@artscaping

Good Morning @donnalujan11. Welcome to Connect. Connect is composed of patients, caregivers and fellow sufferers. My background includes a lack of affinity for medical issues until I became one. Would you be able to tell me a little more about you? For example, what medical diagnoses have you received? How long have you been living with pain? What kind of medical providers do you see regularly? Thanks…. you may meet other mentors and that information would be helpful. Be relieved of pain today, if only for a little while. Chris

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Yes thank you my pain started back in 2011 when I broke my right leg in three different places I woke up one morning and jumped out of bed because I thought I was late for work and my leg went out from under me and did a twirl and broke it in three places and I didn’t get peripheral neuropathy until about two years later after that but now it’s full force in the right leg and has moved to the left leg I’ve done exercise I’ve tried all the cybalta, lyrics, neurontin, savella, change the muscle relax sent up several probably four times with different muscle relax sense but they always seem to go back to the Flexeril I don’t take hydrocodone I don’t like that prescription I do take tramadol but I only try to take no more than two a day. I’m not diabetic with Paeripheal neuropathy most people are diabetic. I know most of the physicians in town from working with them but I do have a pain specialist and neurologist rheumatoid arthritis an internist I feel like I’m leaving one of my physicians out but my brain is not working right now I would appreciate any thoughts any recommendations and suggestions thank you all

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Am new to group. Is it safe for someone with SFN to wear compression socks. The literature and web searches are conflicting. Some say yes and some say no. Do we have an Mayo authority who can advise?

Liked by Leonard

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@rramsey

Am new to group. Is it safe for someone with SFN to wear compression socks. The literature and web searches are conflicting. Some say yes and some say no. Do we have an Mayo authority who can advise?

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Hello @rramsey — Welcome to Connect. You asked a really good question but I'm not sure there is any authority that can provide an all encompassing answer. I think there are variables and you would need to discuss the benefits and risks for your specific health issues.

I have idiopathic small fiber PN and I wear compression socks. I also have lymphedema which is why I need to wear the compression socks. My right leg and ankle have swelling that increases throughout the day. My Mayo cardiology doctor prescribed the compression socks to help with the swelling and I'm also supposed to elevate the leg frequently throughout the day which doesn't always happen.

Have you discussed wearing compression socks with your neurologist or doctor and asked if it is safe?

Liked by Leonard

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I'm 27 years old and I've been dealing with SFN for over a year now. Had the biopsy to confirm and tried various antidepressants. Currently I decided to stop taking medication because I don't want to be on anything. I'm so young and don't understand why this has happened as I'm sure many of you feel. I've always been healthy and don't have diabetes or any known cause. It's so frustrating and every day is a battle to be positive. Some days i'm depressed and others I'm mad. At this point i don't know if I should even see anymore doctors because it's the same drill as in they can't do anything or don't know the cause.

For natural remedies what has worked for relief?
Also have your symptoms of SFN gotten worse?

Acupuncture – don't think it's helped at all.
I've been trying drinking celery juice every day, giving that more time.
Eat lots of fruits and veggies through out the day.

Thank you for your support and tips.

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@ashley302

I'm 27 years old and I've been dealing with SFN for over a year now. Had the biopsy to confirm and tried various antidepressants. Currently I decided to stop taking medication because I don't want to be on anything. I'm so young and don't understand why this has happened as I'm sure many of you feel. I've always been healthy and don't have diabetes or any known cause. It's so frustrating and every day is a battle to be positive. Some days i'm depressed and others I'm mad. At this point i don't know if I should even see anymore doctors because it's the same drill as in they can't do anything or don't know the cause.

For natural remedies what has worked for relief?
Also have your symptoms of SFN gotten worse?

Acupuncture – don't think it's helped at all.
I've been trying drinking celery juice every day, giving that more time.
Eat lots of fruits and veggies through out the day.

Thank you for your support and tips.

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@ashley302

I'm 69, and have known for around ten years that I have idiopathic peripheral neuropathy, but the pain didn't start until 4 years ago. I tried every medication for neuropathy and they either did nothing for the pain or they had unacceptable side effects. I've been taking morphine sulfate contin for a few years, but it only makes the pain slightly less. Two years ago I had a Burst DR spinal cord stimulator implant, and it reduced the pain by more than 75%, but it has to be adjusted every few months to keep up with the pain. A month ago my pain specialist prescribed imipramine, and it really seems to be working. Hallelujah!!!

One drawback is that the stimulator is supposed to be MRI compatible but it turned out that it isn't. The company rep told me that some time this week he'll be cleared to download a system update that will (hopefully) make it possible for me to get the two MRI's that I need.

If you read through the posts in this discussion and others, you'll find out that a lot of people try a lot of different things. As to how neuropathy progresses, it's different for everyone, so no doctor can tell you exactly how it will progress for you. All that can be done is to treat the symptoms, and there are a ton of ways people do that.

Best of luck.

Jim

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