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?

@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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Hi @ericvnelson. I’m sorry you’re having such a hard time. I read your post with interest, especially as it relates to the leg numbness and laminectomy. I had spinal fusion/laminectomy surgery a year ago. Much more involved than just a laminectomy, however, I had previously been diagnosed with small fiber neuropathy – SFN. After the surgery, 3 things happened:
1. I developed foot drop in my left leg. To this day, the core of my left leg and my left foot are permanently numb. When I came home from surgery, I could walk with a walker only.
2. It turns out, there was a nerve which was pinched and after the laminectomy part of the surgery and the disturbance of the surgery itself, that nerve worsened for lack of a better term. It’s crushed. In most cases, after a year whatever you’ve lost with nerves isn’t coming back.
3. My SFN went crazy. Numbness, tingling, pain, cramps, etc. got worse

Now comes the GOOD part. It’s a year later and after a few months of pain meds, and laying on the couch wondering what’s next, as I was doing PT three times a week, I realized exercise helped my symptoms. All of them. So after three months of home PT, i “ graduated” to outside PT. I researched and found the best PT person I could. Went and visited, discussed my challenges, and felt he understood. As I got stronger, my pain level started to drop. Little by little. After graduating from three months with him, I went to a strength trainer associated with my PT guy. I work out three times a week with him. Even with the numbness, he helps me combat the instabilities. The difference has been remarkable. I still have days where I can hardly get out of bed, but my stamina and strength continue to grow. I know it sounds counterintuitive to exercise when you’re in pain, but it’s the best thing for you. I take Lyrica for the neuropathy, it helps but it’s not a cure all. Knocks the symptoms down a bit. I use cannabis in vape and flower form, CBD cream. It takes a while to settle into a new normal. Give yourself some time. A therapist can help you feel like your not crazy. I do yoga occasionally. Very helpful. I’ve learned it helps me to have a “toolbox” to help me control and cope with my limitations. But, they are far less today than they were a year ago. I wish you well. Hang in there

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Thank you , @ericvnelson, ur experience aligns mine. But it gets worse. They r hooking a fatal disorder polyneuropathy with hATTR amyloidosis w it. My sacral nerve is pinched ( maybe crushed) I m in constant pain & it appears this nerve has caused multiple problems.
I am very discouraged. We can't get cannibus in NC, only hemp which did nothing. Thank you. Elaine

Liked by teetee7, elained

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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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Hello Eric @ericvnelson, I would like to add my welcome along with @elained and other members. I also have idiopathic small fiber PN that I've had for more than 20 years. I also only have the numbness with no pain. The numbness had reached just below the knees in both legs when I first started on Connect. I started taking some supplements that provide the nerves the nutrients they need and within a couple of months the numbness went to just above the ankles and that was the end of 2016. I'm still taking the supplements but I haven't made any more progress. The numbness still feels like it's just above the ankles. Even so, I feel it's a win for me and just means I have a new normal. If you want to know more about it, I've posted all the details in more story in an earlier post on Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
You mentioned you recently had laminectomy decompression surgery but you haven't noticed any difference. Did the doctor/surgeon say how long it might be before you notice any improvement?

I'm tagging @jenniferhunter who may be able to provide some insight or more information for you.

I know it's not much comfort but you are not alone. Keep asking questions and learning as much as you can about your health condition. You are your best health advocate.

John

Liked by teetee7, elained

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@elained

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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@ericvnelson @elained I'm sorry to hear you both are having such a hard time and are having difficulty finding any hope. Hopefully this community and the suggestions and experiences described by it's members lead you to doctors/treatments that will help you!

I will be 32 in April, and was only just diagnosed with small fiber neuropathy this past summer (causing autonomic nervous system dysfunction on top of myofascial pain syndrome, fibromyalgia, spine damage from a 2011 car accident including a syrinx and 3 disc problems, a tumor on the T8 spinal nerve, [among other things]).

Starting in November it seemed like my symptoms started progressing rapidly, more intense/widespread weakness and numbness, worsening pain that was already quite debilitating, inability to keep weight on (the initial symptom that sent me to the doctor was losing 50 pounds in a month a couple years back. I put 15 back on, but I've lost it and continue to lose weight), terrible hot sweats alternating with chills, balance issues with a fall, a separate syncopal episode, and I'm sure I'm missing other symptoms.

When you two were first were diagnosed, did you have minimal symptoms? When I was diagnosed, I already had troublesome symptoms and was set up with a physical therapist. With all the other health issues I have/have had, I'm thinking I've had this much longer than I thought, and that my symptoms went unnoticed/attributed to my other conditions. I feel like I completely missed that period of relatively 'normal' physical ability. I played hockey year round, ran track, skied, hiked, lifted weights (all except year round hockey continued through college)… I get tired typing now and have difficulty playing guitar or writing. I still can walk unassisted, but the longer I am in a sitting or standing position, the more tired I feel and the worse my pain gets… I often lay in bed, on the couch, or on my monster giant bean bag as taking the weight off my spine in that position is the only position that doesn't make the pain worse. I feel like I'm going to need a cane soon to help my balance, but I don't know how that will work out as my arms go numb and constantly feel weak (I took out an empty dinner plate the other night and had to put it down after a minute).

Elaine, can I ask how long after your diagnosis 9 years ago your symptoms progressed to the point of needing leg braces and a walker?

Have either of you tried IVIG, plasmapheresis, or corticosteroids?

Liked by teetee7, elained

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@lisalucier

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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Is Baclofen similar to Tizanadine? Can you take it during the day or does it make you sleepy? TY Peggy

Liked by elained

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@pfbacon

Is Baclofen similar to Tizanadine? Can you take it during the day or does it make you sleepy? TY Peggy

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I’m sorry but I don’t know. I really haven’t taken Baclofen on a regular basis. Pain iIsn’t aa a big problem for me it’s the balance that is my problem. I took ibuprofen The other day and that actually gave me relief.JIM

Liked by elained

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@wolfbauer

@ericvnelson @elained I'm sorry to hear you both are having such a hard time and are having difficulty finding any hope. Hopefully this community and the suggestions and experiences described by it's members lead you to doctors/treatments that will help you!

I will be 32 in April, and was only just diagnosed with small fiber neuropathy this past summer (causing autonomic nervous system dysfunction on top of myofascial pain syndrome, fibromyalgia, spine damage from a 2011 car accident including a syrinx and 3 disc problems, a tumor on the T8 spinal nerve, [among other things]).

Starting in November it seemed like my symptoms started progressing rapidly, more intense/widespread weakness and numbness, worsening pain that was already quite debilitating, inability to keep weight on (the initial symptom that sent me to the doctor was losing 50 pounds in a month a couple years back. I put 15 back on, but I've lost it and continue to lose weight), terrible hot sweats alternating with chills, balance issues with a fall, a separate syncopal episode, and I'm sure I'm missing other symptoms.

When you two were first were diagnosed, did you have minimal symptoms? When I was diagnosed, I already had troublesome symptoms and was set up with a physical therapist. With all the other health issues I have/have had, I'm thinking I've had this much longer than I thought, and that my symptoms went unnoticed/attributed to my other conditions. I feel like I completely missed that period of relatively 'normal' physical ability. I played hockey year round, ran track, skied, hiked, lifted weights (all except year round hockey continued through college)… I get tired typing now and have difficulty playing guitar or writing. I still can walk unassisted, but the longer I am in a sitting or standing position, the more tired I feel and the worse my pain gets… I often lay in bed, on the couch, or on my monster giant bean bag as taking the weight off my spine in that position is the only position that doesn't make the pain worse. I feel like I'm going to need a cane soon to help my balance, but I don't know how that will work out as my arms go numb and constantly feel weak (I took out an empty dinner plate the other night and had to put it down after a minute).

Elaine, can I ask how long after your diagnosis 9 years ago your symptoms progressed to the point of needing leg braces and a walker?

Have either of you tried IVIG, plasmapheresis, or corticosteroids?

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Dear wolfbauer,

I did not realize that the problems I experienced prior to my diagnosis (2010) were related to a 'condition'. I was progressively unable to walk long distances, walk up hill, I stumbled and fell several times, I could not ride my new bicycle (I thought it was a the bike!

All of these problems were from neuropathy and foot drop.

I began wearing braces in January 2016. I began using a walker in February 2017.

I have had IVIG every four weeks since 2013 because I was found to have Primary Antibody Deficiency (CVID is the diagnosis). This IVIG hasn't affected my PN, in fact I have become completely disabled since 2013 and cannot walk unaided.

I haven't tried plasmapheresis.

Corticosteroids: I have taken 2 mg Medrol (methylprednisolone) every other day since 2013 in order to tolerate my IVIG. IVIG sets off an inflammatory response from my immune system and Medrol stops the inflammation.

When I have additional episodes of pain from periodic inflammation from my Immune Disorder, I take additional Medrol to stop that inflammation.

I suppose if a neuropathy is caused only by inflammation, then corticosteroids would be successful in helping the neuropathy.

In my case the nerves in my body are physically damaged by attacks from my Immune System, not from inflammation compressing the nerves.

I did have surgery on my back in 2016. The surgeon performed a physical decompression of a nerve in my spine. This is called a laminectomy/ The nerve in my spine, at L3 was compressed by arthritic overgrowth of bone which caused acute sciatica. I could not stand or even sit, but had to lie down or else I was in very severe pain. Once the surgery was performed, the pain was completely gone.

I hope this answers your questions.

Regards, ElaineD

Liked by teetee7

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Correction to previous post:

Surgery for a laminectomy at L3 (spine) was in 2016 not 2006.

Regards, Elaine

Liked by teetee7

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@kansasgal

I was diagnosed first with 3 foot & leg issues. Surgeon wanted to do 3 surgeries on both feet and legs, tarsal tunnel in ankle, shave bone off ball of foot, and lengthen Achilles tendon. I sought a 2nd opinion & was diagnosed with Morton's Neuroma and had that surgery on one foot but nothing happened to make it better. Went to Neurologist & after several tests was diagnosed with peripheral neuropathy. With the opoid epidemic, GP Dr. took all patients off pain meds, so I quit after 5 years on Narco 5. Luckily, I never took more than 1 and a half pills a day, not because it helped so much with the pain, but I did not want to get addicted. I was referred to Pain Management clinic, where they told me opoids are not indicated for PN. OMG I am in so much pain. I take 8 gabapentin/day, 3 duloxetine, BP meds, etc. I can't live like this, any suggestions?

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Hello @kansasgal, welcome to Mayo Clinic Connect. I'm sorry you have to deal with so much pain. There is another discussion here on Connect where your post may have more visibility. I'm tagging our moderator @lisalucier to see if we can move your post to the following discussion where you can meet other members dealing with peripheral neuropathy. You might want to read through the discussion while we wait.

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

@kansasgal did you receive any help from the Pain Management Clinic? Are you able to share a little more about the pain you have and your neuropathy diagnosis?

John

Liked by teetee7

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@james4753xerxes

I’m sorry but I don’t know. I really haven’t taken Baclofen on a regular basis. Pain iIsn’t aa a big problem for me it’s the balance that is my problem. I took ibuprofen The other day and that actually gave me relief.JIM

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Thank you. Peggy

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I was diagnosed first with 3 foot & leg issues. Surgeon wanted to do 3 surgeries on both feet and legs, tarsal tunnel in ankle, shave bone off ball of foot, and lengthen Achilles tendon. I sought a 2nd opinion & was diagnosed with Morton's Neuroma and had that surgery on one foot but nothing happened to make it better. Went to Neurologist & after several tests was diagnosed with peripheral neuropathy. With the opoid epidemic, GP Dr. took all patients off pain meds, so I quit after 5 years on Narco 5. Luckily, I never took more than 1 and a half pills a day, not because it helped so much with the pain, but I did not want to get addicted. I was referred to Pain Management clinic, where they told me opoids are not indicated for PN. OMG I am in so much pain. I take 8 gabapentin/day, 3 duloxetine, BP meds, etc. I can't live like this, any suggestions?

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Hello good morning I’m new here but my neuropathy is getting worse and I don’t know what to do about it?
Barbara

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@casper15

Hello good morning I’m new here but my neuropathy is getting worse and I don’t know what to do about it?
Barbara

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Hi Barbara @casper15, welcome to Mayo Clinic Connect. I see that you mentioned needing decompression surgery in another post related to Ménière disease diagnosis. Are you able to share a little more about your neuropathy diagnosis and any treatments you have tried?

John

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@johnbishop

Hello @kansasgal, welcome to Mayo Clinic Connect. I'm sorry you have to deal with so much pain. There is another discussion here on Connect where your post may have more visibility. I'm tagging our moderator @lisalucier to see if we can move your post to the following discussion where you can meet other members dealing with peripheral neuropathy. You might want to read through the discussion while we wait.

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

@kansasgal did you receive any help from the Pain Management Clinic? Are you able to share a little more about the pain you have and your neuropathy diagnosis?

John

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Hello John, thank you for your reply. I received NO help from the pain clinic, they told me to ask my neurologist about Lyrica. I told them I had already done that, and Neurologist told me since I was already on 2 different nerve pain medications that we should not throw another one into the mix. It was a total waste of my time and money to go to a pain clinic. My latest symptom is heart palpitations, about 1 per minute. Anyone else experience this while on gabipenten or duloxetine or having to quit Norco 5 cold turkey? Also my BP is extremely high, even with BP meds 2x a day, Neurologist said it is due to the pain, but I was given no idea to ease the pain. I only get out of the house to grocery shop or go to doctor, since it hurts to walk.

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@sallymagint

Thank you Colleen and John, I’m hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it’s a team approach and I’m a vital player. It’s not easy, in fact it’s damn hard a lot of the time and some days I wonder how I’m going to get through it but I don’t have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I’m in the process of undergoing treatment with neurosurgery planned in the not to distant future. It’s hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There’s no guarantees and it’s still a long road to travel but I’m crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven’t delved into it too much due to the complexity, it’s helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I’ve been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you’re made to feel it’s in your head. But I’m not giving up, I can’t give up and through perseverance I’ve found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

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Have you looked into Stem Cell therapy?

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