Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016
@silverapple

In this time when I can’ t leave home due Covid, what do you do for relieve pain?

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Hello @silverapple, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. I see that you have had pain from neuropathy for over 10 years and you are looking for what others do to relieve pain when they can't leave home due to COVID-19. I don't have pain but do have numbness. There is another discussion where myself and other members have shared their neuropathy journey and what helps them. It might be helpful to read through the posts and learned what others have shared.

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

Are you able to share a little more about your diagnosis and any treatments you have tried?

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I had a frustrating form of Guillain Barré Syndrome. I couldn't dress or comb my hair, I lost my strength. I felt into bed. I did not receive proper medical attention and I had sequelae, neuropathic pain is one of them.
In addition to a Multiglandular Syndrome, adrenal, thyroid, pineal classified.

Actually I do have a treatment with Carbamazepine,B Complex, Folic acid, D3.

But the grade and extension of my pain has being growing up. It covers literaly all my body. Since feet to head including face.

While Writing this message, I am standing no foot, to be seat is very painful, also to sleep.

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Hello @silverapple, Thank you for the private message. I thought I would answer it here in this discussion since other new members may also have the same question – how do I find my comments?

1 – Click on your profile link.
2 – Select Profile & Settings.
3 – Then select Comments.

You should see all of your comments with the most recent at the top.

Another good item to check out is the blog page – How to comment, reply, like, bookmark, and more: https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/how-to-comment-reply-like-bookmark-and-more/. This page has a lot of good information to help new members navigate Connect.

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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3 years

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@johnwburns

Isolating an autoimmune disease can be very complicated unless the symptoms jump out at them, like discoid lupus with corroborating blood work. Did you have a positive ANA test? Any indicators of ongoing inflammation like a positive ESR and/or CRP? What made them dump it into the fibromyalgia bucket? My pain has subsided the longer that I’ve had the neuropathy, now numbness is the primary thing. That and its impact on my gait. I have to be careful walking over uneven surfaces. The pain meds that I use now are gabapentin and duloxetine, which are usually adequate. I have some tramadol too and will use that only if things get out of hand from too much walking. If I had any advice I would say to keep walking, even with pain. If you have a treadmill, make yourself use it. I’m convinced that a lot of waking has arrested the progress of my neuropathy but medications have probably helped as well. You may never find out the root cause for your problems. I’ve never heard of fibromyalgia causing neuropathy but I’m not sure that’s what you said. Anyway, don’t let the pain beat you, take control of it.

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Hi John- Just found this group! I take 3300 mg gabapentin, cymbalta and have tramadol for pain that is really bad- I also take .75 mg clonopin ( spelling?) at night. I have small fiber bilateral idiopathic peripheral neuropathy in my feet – also went from stabbing pain in toes to mostly numbness and weird general feeling of fuzzies now creeping up to ankles and lower legs. Neurologist isn’t much help. I have PAD also and am not diabetic. Doesn’t seem like any of this is treated or understood! I wish there was a better clinic in Connecticut.

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@luann262

Hi John- Just found this group! I take 3300 mg gabapentin, cymbalta and have tramadol for pain that is really bad- I also take .75 mg clonopin ( spelling?) at night. I have small fiber bilateral idiopathic peripheral neuropathy in my feet – also went from stabbing pain in toes to mostly numbness and weird general feeling of fuzzies now creeping up to ankles and lower legs. Neurologist isn’t much help. I have PAD also and am not diabetic. Doesn’t seem like any of this is treated or understood! I wish there was a better clinic in Connecticut.

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Hello @luann262, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. @peggyn and @judeeo have posted in other discussions about peripheral artery disease and may be able to share some information with you.

You might find the following discussion helpful where members have shared what has helped them with their neuropathy journey.
Member Neuropathy Journey Stories: What's Yours?
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

It's good that you are learning more about your condition. Here are a few resources you might want to bookmark.
– Neuropathy Commons: https://neuropathycommons.org/
– Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Have you tried any alternative treatments or therapy to help with your neuropathy symptoms?

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Thanks John! Wow! So after work I will delve into those links!

Yes, I get a full body massage with extra on legs and feet about every 3 weeks, pedicures when I can, I have a Renpho foot massager that I sink my numb feet into in the am and pm. I take a lot of supplements- alphoic acid, tumeric, COQ10, calcium, vitaimin D3, B12, I use some creams – Biofreeze, and some made for neuropathy . Yoga twice a week on zoom , walking every day. I quit drinking all alcohol and drink lots of water. Hmmmmm …. I would like to maybe switch doctors although I do go to Yale in New Haven , Ct. Have had the nerve conductivity but when I asked for an MRI or some type of test to see if my stenosi is a cause, he isn't receptive.

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@luann262

Thanks John! Wow! So after work I will delve into those links!

Yes, I get a full body massage with extra on legs and feet about every 3 weeks, pedicures when I can, I have a Renpho foot massager that I sink my numb feet into in the am and pm. I take a lot of supplements- alphoic acid, tumeric, COQ10, calcium, vitaimin D3, B12, I use some creams – Biofreeze, and some made for neuropathy . Yoga twice a week on zoom , walking every day. I quit drinking all alcohol and drink lots of water. Hmmmmm …. I would like to maybe switch doctors although I do go to Yale in New Haven , Ct. Have had the nerve conductivity but when I asked for an MRI or some type of test to see if my stenosi is a cause, he isn't receptive.

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Luann I’ve been down this road as well with no answers and my Neurologist is very good but I’m sure like all of us with this disease SFN there at a loss trying to help us . it’s very frustrating for both . I’ve been through this journey no feeling in either of my feet I’ve tried it all even bee stings for each leg 10 on each side . I asked the guy when he was going to get started didn’t realize I had already been stung 3 times stingers still pulsing the bee venom in my first round of stings . I’m in a wheelchair and can’t walk . I hope you find help keep pushing forward I seen several neurologist before I found one that really knew and cared because he has neuropathy himself but from diabetes
I don’t have Diabetes either but I’ve had feet problems for years before I finally just went completely down

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@robin0613

The Solanpas w/Lidocaine helps the little tingles and “Bee stings”, the CBD Oil I use at night because it works really well. I’m not sure how well the Cymbalta is, but I’m not going to find out if it especially brings back my pain

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Hi fellow neuropathy sufferers. I know no doctors will admit this but my best help was the ultra strong meds like morphine. When that’s was cut savella add on ( SNRI) works good. I piece-meal the rest with Nucynta and strong muscle relaxers to help constant contractions.
The herbals are kava, St. John’s wort, lemon balm n evening primrose oil , all in large doses. I’m still house bound but I can rest.
Don’t forget nerve blocks also help.
Prayers to all of you suffering n hope anything improves.
Also looking at homeopathic n I’ve tried Kinesiology tape fr bad, bad places

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@ktgirl

I would be interested in the link you mentioned. My feet are really sore and tingly. I waiting to hear if I will get an appointment at Mayo. I have some sore toes that have calluses on them. I'm on my feet all day at work. Which probably doesn't help with the pain.
Thanks for your post.

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Here's the link for anyone interested in the highly-recommended mohair socks which I find very therapeutic especially at night when trying to sleep but also during the day …https://realwoolshop.ca/collections/socks-mens/products/mohair-socks

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@jonathanc

Here's the link for anyone interested in the highly-recommended mohair socks which I find very therapeutic especially at night when trying to sleep but also during the day …https://realwoolshop.ca/collections/socks-mens/products/mohair-socks

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Thank you so much. Those slippers and socks look wonderful. I'll definitely give them a try.

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