Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@lisash

Hello…I have neuropathy in both feet. And severe nerve damage in one finger that spreading.
I use CBD OIL. And Herbal /CBD Cream
It soothes the nerve damaged fingers. My feet are a LIKE NEWSFLASH, didnt know I have it. They do burn, both of them do, one toe feels like a rubber band is on it. I use nothing on them …YET.. actually just now thinking of using the cream on one foot tonight.
The oil is oral and taken 2 times a day and it is about gome now to take it.
Where do you get the gabapentin?
What is the cost?
I spent 65$ on 1 bottle/1months supply CBD OIL. Thats the oral oral.
…and 35$ on the Lavender Herbal Cream over the counter at Like Walmart.
I was told by the CBD oil guy that most of his clients are in their 80s. That was news to me.
It all is not a cure. But it soothes me.
I am sick right now and am curious if I should kept taking the CBD while I was taking antibiotics and a cough med with codine…I so dont believe there was much codine in it. I had insomnia the past week and that is NOT normal.
I usually sleep like a baby, no matter what.
Oh…yes, I had a question for you ..
Did the cortisone help??

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Hi, @lisash

I have small fiber idiopathic peripheral neuropathy, and the pain is primarily in my feet. It started out years ago with tingling in my feet and legs, then it became pins and needles, and for maybe 5 years I've had burning pain, starting in the balls of my feet, spreading to my toes, and now it's in my ankles.

I tried every medication for neuropathy, including Gabapentin. My siblings have neuropathy, too, and Gabapentin has treated it for them, but not for me. It's a common medication for peripheral neuropathy pain, and is a prescription medication.

My primary care doctor had me try the meds usually used for pn. Then I started seeing a neurologist, who prescribed everything in his arsenal. From there I went to a pain specialist, who has even more meds. I think that what I'm taking is about the end of his list.

Two years ago I had a Burst DR spinal cord stimulator implant, and I had immediate relief from the pain, like 75% improvement. It felt wonderful!

After a year, the stimulator started being less helpful, so I have been seeing the man who is a rep for the company which makes it. I need to see him every 3 months, and he adjusts the settings on the stimulator. It takes care of some of the pain, but I have to take medications for the rest of the pain. As I said, I tried everything the doctors could think of before getting the stimulator implant. I've been taking morphine sulfate contin for several years and it takes the edge off the pain. Two months ago the pain specialist prescribed Imipramine, and it's really helped. If I do much walking, my feet hurt, and they hurt every night when I lie down in bed. I use lidocaine cream on my feet when they really hurt, and I found a non prescription cream on Amazon called Uber Numb, that numbs my feet for a couple of hours while I'm going to sleep. The prescription lidocaine cream is outrageously expensive, but the Uber Numb only cost $16.

Do you have a doctor who has done tests to diagnose the neuropathy? I think Gabapentin is one of the first medications that is prescribed. I hope you find help soon.

I've never tried CBD oil, but many people swear by it. Chris at @artscaping has been a good resource here. You might talk with her about it.

God bless you and keep you.

Jim

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@lisash

Hello…I have neuropathy in both feet. And severe nerve damage in one finger that spreading.
I use CBD OIL. And Herbal /CBD Cream
It soothes the nerve damaged fingers. My feet are a LIKE NEWSFLASH, didnt know I have it. They do burn, both of them do, one toe feels like a rubber band is on it. I use nothing on them …YET.. actually just now thinking of using the cream on one foot tonight.
The oil is oral and taken 2 times a day and it is about gome now to take it.
Where do you get the gabapentin?
What is the cost?
I spent 65$ on 1 bottle/1months supply CBD OIL. Thats the oral oral.
…and 35$ on the Lavender Herbal Cream over the counter at Like Walmart.
I was told by the CBD oil guy that most of his clients are in their 80s. That was news to me.
It all is not a cure. But it soothes me.
I am sick right now and am curious if I should kept taking the CBD while I was taking antibiotics and a cough med with codine…I so dont believe there was much codine in it. I had insomnia the past week and that is NOT normal.
I usually sleep like a baby, no matter what.
Oh…yes, I had a question for you ..
Did the cortisone help??

Jump to this post

@liash I have neuropathy and cant take CBD oil but I do use a cream Topricin its about 25.00 I like it as it stops the tingling and gabapentin this the Dr prescribes. They both give you relieve

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Gabapetine is a prescription. your Dr should be able to write a script. Cost will vary depending on your insurance/copay/etc. Cortisone usually helps with Arthrytis pain but IMO, does nothing for nerve pain. Actually that's one of the biggest problems for people who have a type of PN that has lots of pain as the symptom. Nerve pain is very hard to control. there are lots of things to try and you may find something that really help you. Everyone is different, your doc should help you try various main control methods to find what is effective and fits your budget. The trick is finding something that controls the pain but doesn't turn you into a zombie. Good luck, God bless!

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@rabbit10

Thanks for your reply grandma41 would mind sharing your essential oil formula? I would like to try it.

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also have neuropathy. I am an esential oil user also would be interested in what you use t0 see if I might tweek what I am using to help.

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@johnbishop

Hi – I’ve had peripheral neuropathy in my feet and now legs for a little over 10 years. I’m probably more fortunate than most since mine is mostly numbness and tingling and no sharp pains. My doctors had me on gabapentin for awhile but it did nothing for me and when I discussed it with a new doctor team I was told gabapentin is only for pain and not numbness. I had to have an ECS and MRI before I could meet with a neurologist. The tests confirmed I have nerve damage but we still don’t know the root cause. I have an appointment for May 2nd with the neurologist and I’m hoping to find out what type of neuropathy I have which may help when talking with other people with the same type of neuropathy who have found what works for them. Two excellent sources of information are the MN Neuropathy Association (http://www.neuropathy-mn.org/) and the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/).

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Thank you John, for the two links. Have searched the Web for several weeks and never came up with these organizations!! I am new to the neuro problem (6 mo) and searching for answers/solutions if they exist. Cannot get into see a neuro doc till Jan 2020. With Appreciation — Di

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Hello I have neuropathy very bad in hands feet and legs already had part of my foot amputated this was all most likely due to having high blood sugar for a long period of time.

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yes it's no fun very painful and debilitating

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@tonydez1967

yes it's no fun very painful and debilitating

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Hi Tony @tonydez, welcome to Mayo Clinic Connect. You are right about neuropathy being very painful and no fun. There are many members that may be able to share their experience with you. I shared my neuropathy symptoms and what has helped me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You mentioned you had to have part of your foot amputated possibly due to having high blood sugar for a long period of time. Do you have Type 2 Diabetes? There is another discussion which you might find helpful here:

> Groups > Neuropathy > Diabetic Neuropathy progressing?
https://connect.mayoclinic.org/discussion/diabetic-neuropathy-progressing/

Neuropathy Commons is another good site for learning more about neuropathy. Here is a search link on their site for diabetic neuropathy links: https://neuropathycommons.org/search/node/diabetic%20neuropathy

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@johnbishop

Thanks Salena. I hope you are able to find some relief soon. I’ve heard the essential oils have helped some folks. I’m going to an oils learning session tomorrow evening and am planning to a blend of coconut oil, frankincense, cypress and lavender essential oils which is suppose to help if you have peripheral neuropathy. I’ve tried others that help a little but not a lot – PRIM (from herbal shop online), Blue-Emu, Australian Dream, Topricin, and a few others. They do make your feet feel a little better and putting it on helps you check your feet for sores, etc… God Bless!

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John, did the coconut oil and frankincense plus other things mixture help with your peripheral neuropathy? I do hope so!!
I'm still using the F&M Neuropathy essential oil on my burning feet and it has made a difference in my pain and ability to walk.
I'm about to add Hyland's Restful Leg pills at the suggestion of some on here… Always hoping for improvement and relief for
all of us!

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@hotfooted

John, did the coconut oil and frankincense plus other things mixture help with your peripheral neuropathy? I do hope so!!
I'm still using the F&M Neuropathy essential oil on my burning feet and it has made a difference in my pain and ability to walk.
I'm about to add Hyland's Restful Leg pills at the suggestion of some on here… Always hoping for improvement and relief for
all of us!

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Hi @hotfooted, the coconut oil and Frankincense mixture didn't help with my numbness symptoms but they may help with other symptoms. To date I've found nothing that helps with the numbness. I do think the oils help keep the skin moist which helps protect the layer where the nerves are located. Hoping they work for you!

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I have had neuropathy for 14 years> I take gabapentine wish it helps sometimes. Some days I get the pain so bad that I just scream.

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@jacksgarden

I have had neuropathy for 14 years> I take gabapentine wish it helps sometimes. Some days I get the pain so bad that I just scream.

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I know the feeling….i was told my doctor" my nerves get on my nerves". I have tried almost everything over the 16 years i have had it. My best was when i was on ivig treatments but dr took me iff after 8 years😥. Hang in there..sometimes when i get all balled up..i change what i am doing..if you can take a short walk. It takes my mind off of my nerves.

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@ginthert

I know the feeling….i was told my doctor" my nerves get on my nerves". I have tried almost everything over the 16 years i have had it. My best was when i was on ivig treatments but dr took me iff after 8 years😥. Hang in there..sometimes when i get all balled up..i change what i am doing..if you can take a short walk. It takes my mind off of my nerves.

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@ginthert

That's really tough that your doctor took you off the one thing that was helping. Did they give you a satisfactory reason, and get on a new medication that works as well as the IVIG?

Jim

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@phoenix0509 has both PMR and idiopathic small fiber PN and would like to know if other members share these symptoms. Here's a link to respond to his question if you have PMR and neuropathy. Thanks much for responding!
https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-pmr-meet-others-share-your-story/?pg=2#comment-358420

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I have chronic inflammatory demyelinating polyneuropathy (CIDP), an incurable autoimmune disease that destroys the nerves in the legs/feet and arms/hands. Fortunately, I have very little damage in my arms, but I have lost 80% of the nerve function in both legs. (It’s a symmetrical disease.) I receive IVIG regularly to keep it from getting worse. I can use a cane inside our house, but have to be in a wheelchair away from home.

Liked by phoenix0509, rwinney

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