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?

@lynnejoy

Hi this is my first post so please bare with me . I have got peripheral neuropathy and suffer numb feet and pain in my heels and calves and now I’m getting the pins and needles sensation in my right hand and worry it’s spreading . My GP is not doing much for me , I’m on pregabalin 100mg in a morning and same in the evening . He has just given me an extra tab 50mg to take in between which isn’t doing much to be honest . Iv now read about and been recommended CBD paste and decided I’m going to try this . Just wondered if anyone else has tried it and thoughts on this please ?

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Hello, @lynnejoy – I'd like to add my welcome to Mayo Clinic Connect. I've moved your post and @johnbishop's response to this larger discussion on neuropathy so you can meet many others also dealing with this condition.

Have you also tried other medications or other therapies for the pain you've experienced prior to the pregabalin you mentioned you take currently?

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@lynnejoy

Hi this is my first post so please bare with me . I have got peripheral neuropathy and suffer numb feet and pain in my heels and calves and now I’m getting the pins and needles sensation in my right hand and worry it’s spreading . My GP is not doing much for me , I’m on pregabalin 100mg in a morning and same in the evening . He has just given me an extra tab 50mg to take in between which isn’t doing much to be honest . Iv now read about and been recommended CBD paste and decided I’m going to try this . Just wondered if anyone else has tried it and thoughts on this please ?

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Hi I am sensitive to all pharmaceuticals so for 2 years now I have been on medical marijuana it’s not a miracle but it helps with pain and sleep I also use CBD oil, it’s tricky and everyone reacts different as with other meds,it is a trial and error until you find which strains work best for you but I use CBD oil in the day time and an Indica strain before sleep,and I can get at least 5 good hours,if you would like to know more about this and if it legal in your state I would be happy to help you with information, please know that CBD is not all equal and hemp will not do what CBD oil does and there are a lot of multi level marketing out there offering their magic snake oil

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@7510cahill

Best Pain Medication

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Cymbalta, Gabapentin, Aleve, Low Dose Naltrexone, Corticosteroids like Prednisone and Methylprednisolone. I can't take Cymbalta and Aleve anymore due to side effects, but while the lasted they were magic.

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@friendz4

Hi I am sensitive to all pharmaceuticals so for 2 years now I have been on medical marijuana it’s not a miracle but it helps with pain and sleep I also use CBD oil, it’s tricky and everyone reacts different as with other meds,it is a trial and error until you find which strains work best for you but I use CBD oil in the day time and an Indica strain before sleep,and I can get at least 5 good hours,if you would like to know more about this and if it legal in your state I would be happy to help you with information, please know that CBD is not all equal and hemp will not do what CBD oil does and there are a lot of multi level marketing out there offering their magic snake oil

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Alas, I live in North Carolina, and medical marijuana is not legal yet. I think it will be legal sooner rather than later, since there is so much tax revenue for the State once it is legal. I hope so! i tried CBD Oil and the results were not noticeable, alas.

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@7510cahill

Best Pain Medication

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Hello @7510cahill and @elained, I would like to welcome you both to Mayo Clinic Connect and thank you for posting. @7510cahill you ask a question that I'm sure a lot of us members may have. I have no medical training or background but believe the answer can be different depending on a lot of factors in our health conditions and body. For me, there is no best medication because I only have numbness with my peripheral neuropathy and no drugs help with numbness according to the Mayo neurologist who diagnosed my idiopathic small fiber PN. I'm tagging our moderator @JustinMcClanahan to see if we should move your post to the following discussion where will have much more visibility and you will meet other member discussing treatments.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share a little more about your diagnosis?

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@johnbishop

Hello @7510cahill and @elained, I would like to welcome you both to Mayo Clinic Connect and thank you for posting. @7510cahill you ask a question that I'm sure a lot of us members may have. I have no medical training or background but believe the answer can be different depending on a lot of factors in our health conditions and body. For me, there is no best medication because I only have numbness with my peripheral neuropathy and no drugs help with numbness according to the Mayo neurologist who diagnosed my idiopathic small fiber PN. I'm tagging our moderator @JustinMcClanahan to see if we should move your post to the following discussion where will have much more visibility and you will meet other member discussing treatments.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share a little more about your diagnosis?

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Hello John, I don’t know if this is beyond your scope of mentoring, but I am trying to find a starting point for coming to the Mayo Clinic for testing and a complete medical workup for the diagnosis and treatment of my Burning feet. I’ve had it for years, but only at night and it was very manageable with cool fans and some icing. It did begin to worsen over the last 2-3 years and I talked to my family practice doctor with concerns. He never did any testing and just said I had PN, there was nothing I could do about it except take Gabapentin. It gave me terrible side effects. Since the first part of January it has drastically accelerated! It is constant burning in the bottom of my feet, becoming much worse with activity! I have never seen a neurologist. I live in Colorado, but after researching the best neuropathy hospitals, the Mayo is where I want to come! I just don’t know how to begin. I have Medicare and Tricare for Life as my insurance, but I don’t know if I need a referral from a doctor in Colorado before I can come to Mayo or if the doctors at Mayo will even see me. I’ve tried calling a couple of numbers, but still don’t know how to proceed. Can you help with some contact information and/or advice on how to begin? Thank you so much. Victoria

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@vilee

Hello John, I don’t know if this is beyond your scope of mentoring, but I am trying to find a starting point for coming to the Mayo Clinic for testing and a complete medical workup for the diagnosis and treatment of my Burning feet. I’ve had it for years, but only at night and it was very manageable with cool fans and some icing. It did begin to worsen over the last 2-3 years and I talked to my family practice doctor with concerns. He never did any testing and just said I had PN, there was nothing I could do about it except take Gabapentin. It gave me terrible side effects. Since the first part of January it has drastically accelerated! It is constant burning in the bottom of my feet, becoming much worse with activity! I have never seen a neurologist. I live in Colorado, but after researching the best neuropathy hospitals, the Mayo is where I want to come! I just don’t know how to begin. I have Medicare and Tricare for Life as my insurance, but I don’t know if I need a referral from a doctor in Colorado before I can come to Mayo or if the doctors at Mayo will even see me. I’ve tried calling a couple of numbers, but still don’t know how to proceed. Can you help with some contact information and/or advice on how to begin? Thank you so much. Victoria

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Hi Victoria @vilee, welcome to Mayo Clinic Connect. If you would like to seek help from Mayo Clinic, please call one of our appointment offices.

The contact information for Minnesota, Arizona and Florida can be found here
https://www.mayoclinic.org/appointments.

Are you able to get your doctor to give you a referral? There is a discussion that you may want to read through that might be helpful.

Groups > Visiting Mayo Clinic > Your Tips on How to Get Off to the Best Start with a New Specialist
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Here is a post in the above discussion that has some good suggestions.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

John

Liked by Lisa Lucier

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Thanks for the reply. My main concern has been with poor balance making walking and standing difficult. Minneapolis clinic of Neurology had recommended
5-10 msg of Baclofen which I haven't been using as I didn't see that much benefit and will just live with the pain. I was wondering if there are other medications that would be recommended. Thanks

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@johnbishop

Hi Victoria @vilee, welcome to Mayo Clinic Connect. If you would like to seek help from Mayo Clinic, please call one of our appointment offices.

The contact information for Minnesota, Arizona and Florida can be found here
https://www.mayoclinic.org/appointments.

Are you able to get your doctor to give you a referral? There is a discussion that you may want to read through that might be helpful.

Groups > Visiting Mayo Clinic > Your Tips on How to Get Off to the Best Start with a New Specialist
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Here is a post in the above discussion that has some good suggestions.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

John

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Thank you

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@7510cahill

Thanks for the reply. My main concern has been with poor balance making walking and standing difficult. Minneapolis clinic of Neurology had recommended
5-10 msg of Baclofen which I haven't been using as I didn't see that much benefit and will just live with the pain. I was wondering if there are other medications that would be recommended. Thanks

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Morning, very sorry for this happening to,, but is your diagnosis ,,,femoral neuropathy, this is what they told me, I have balance issues, pain from hip all the way down to the top of foot and sides ,,not the bottom.. My leg will just give out and I fall backwards, have stabbing, at times it's like being hit with a board with 100 needles in it ,,they say it will get better that was in August when my insurance ran out,, it's been going on since June of 2018 ,,,hope to hear from you,, and wishing you the best ,,, ,Gary

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@johnbishop

Hello @lynnejoy, welcome to Mayo Clinic Connect. Thank you for posting…it's a good start to advocating for your own health. I have idiopathic small fiber peripheral neuropathy. It's mostly in my ankles and feet and I've had it for 20+ years. I only have the numbness with my neuropathy and that's bad enough. I know it's hard with both pain and numbness. I take over the counter supplements that focus on providing the nerves the nutrients they need. I found the protocol of supplements in a closed Facebook group. It has helped many others with pain and allowed them to taper off of the drugs. That said, there is no cure for neuropathy so it's just treating the symptoms. Even though it's helping me, it may or may not work for you but it's worth the try. If you want more information, you can find it in my earlier post where I shared my story here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

I'm tagging @artscaping to see if she might be able to offer some suggestions that have worked for her.

You mention you have neuropathy. Have you had any neurological examinations or tests?

P.S. — The first post is always the hardest. I'm glad you took the step. Keep asking questions. Learn as much as you can about your health conditions and keep advocating for your health.

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Thankyou John , yes Iv had all the tests and will try anything to help with this condition , I’m also having acupuncture too but I don’t think it’s doing much and expensive too .

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Best Pain Medication

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@7510cahill

Best Pain Medication

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Hi, @7510cahill – you are looking for the best pain medication for pain associated with your neuropathy, correct? You mentioned baclofen, often used for muscle spasms, was recommended. What other medications have you tried thus far?

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Well I have had neuropothy for 20 years. Started with a little numbness in my feet. It has progressed over the years where the numbness has traveled up my leg. In the past 8 months my neuropothy has gone balistic where the numbness has progressed, my balance is horrible and I have lost muscle. Eight months ago I was skiing and biking and very active. Not now. I have little pain. I have seen 3 neurologists. None are hopeful. I just had a laminectomy decompression surgery 10 days ago. Have not noticed any improvement. Any suggestions? I'm devestated.

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@ericvnelson

Well I have had neuropothy for 20 years. Started with a little numbness in my feet. It has progressed over the years where the numbness has traveled up my leg. In the past 8 months my neuropothy has gone balistic where the numbness has progressed, my balance is horrible and I have lost muscle. Eight months ago I was skiing and biking and very active. Not now. I have little pain. I have seen 3 neurologists. None are hopeful. I just had a laminectomy decompression surgery 10 days ago. Have not noticed any improvement. Any suggestions? I'm devestated.

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Dear Eric,

I didn't even notice any symptoms, until I was diagnosed with Profound Peripheral Neuropathy. I discounted my stumbling and slowness as 'being out of shape'. I found it harder and harder to walk any distance and up hills.

I didn't have any particular pain with the neuropathy in my feet and legs. The diagnosis was made 9 years ago. I used to ski,, ride a bike, hike, I wasn't an athlete but I did lots of fun things.

Now I have leg braces and walk with a walker. And I have many neuropathies in other parts of my body. The Small Fiber Neuropathy is very painful and I take Gabapentin for it.

No cause for my neuropathies has been established through testing (and I've had ALL the tests several times). My Immunologist believes that my own Immune System mistakenly attacks my own body, damaging the nerves is various parts.

When I had sciatica recently (2006) and it was unbelievably painful, I had a laminectomy and it stopped the sciatica completely.

It is hard to be so disabled,, and to have no cure or even treatment to slow down the progress of the disease.

Regards, ElaineD

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