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?

@judypall

Yes. What are the treatments that work? What is the cost? I live in Ohio so this would be very difficult to do. But maybe someone around me does the same. Any information you can give would be great.

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The treatments are $80 per visit, no matter which or how many different treatments they do in a visit. Medicare does cover all or most of it, if you have a good supplement it should cover what Medicare doesn't. I really hesitate to say what treatments worked for me because they may not work for others. They have multiple treatment options for neuropathy, it's well worth a phone call to them.

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I also went to a podiatrist when I first felt numbness in my toes — he said it was Morton's neuroma — he gave me two options: have surgery or wait until the symptoms get worse and then do surgery — I opted for the second one — when I went back a year later, he said it was not a neuroma, but I needed to see a neurologist, and later was diagnosed with PN — glad I didn't opt for the surgery because it would not have changed anything

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@lois6524

I also went to a podiatrist when I first felt numbness in my toes — he said it was Morton's neuroma — he gave me two options: have surgery or wait until the symptoms get worse and then do surgery — I opted for the second one — when I went back a year later, he said it was not a neuroma, but I needed to see a neurologist, and later was diagnosed with PN — glad I didn't opt for the surgery because it would not have changed anything

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@lois6524 I am having trouble with my feet also. I am a diabetic 2 and in the last month, I have been in pain with my feet. I feel as if I am walking on shards of glass. The podiatrist did nothing–said there was nothing wrong. What does a neurologist do to help you? I would have to drive an hour to get to a neurologist—not one in this small town where I live.
Really need something so that I can walk.
Thanks,
@retiredteacher Carol

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@retiredteacher

@lois6524 I am having trouble with my feet also. I am a diabetic 2 and in the last month, I have been in pain with my feet. I feel as if I am walking on shards of glass. The podiatrist did nothing–said there was nothing wrong. What does a neurologist do to help you? I would have to drive an hour to get to a neurologist—not one in this small town where I live.
Really need something so that I can walk.
Thanks,
@retiredteacher Carol

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@retiredteacher I have small fiber peripheral neuropathy but I don't have any pain. I just have numbness and have had it 20+ years. There are no drug related treatments for the numbness but they normally treat neuropathy pain with medications. There is a good description and information of diabetic neuropathy on Mayo's website here:

Diabetic neuropathy – Diagnosis & Treatment
https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/diagnosis-treatment/drc-20371587

The American Diabetes Association also has some good information about diabetic neuropathy.
http://www.diabetes.org/living-with-diabetes/complications/neuropathy/

You might be interested in reading about Myofascial Release Therapy for pain that may be helpful. It's something I plan to do once I have my knee surgery done.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
A year or so ago I was at a meeting of the Minnesota Neuropathy Association and we had a presentation by the research scientist and doctors who developed some special "shoes" for helping people with diabetic neuropathy walk — aptly call Walkasins. It had not yet received FDA approval at the time but has now. The first video is of a test patient who had been home bound for several years due to diabetic neuropathy.
http://www.rxfunction.com/

John

Liked by Jennifer Hunter

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@johnbishop

@retiredteacher I have small fiber peripheral neuropathy but I don't have any pain. I just have numbness and have had it 20+ years. There are no drug related treatments for the numbness but they normally treat neuropathy pain with medications. There is a good description and information of diabetic neuropathy on Mayo's website here:

Diabetic neuropathy – Diagnosis & Treatment
https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/diagnosis-treatment/drc-20371587

The American Diabetes Association also has some good information about diabetic neuropathy.
http://www.diabetes.org/living-with-diabetes/complications/neuropathy/

You might be interested in reading about Myofascial Release Therapy for pain that may be helpful. It's something I plan to do once I have my knee surgery done.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
A year or so ago I was at a meeting of the Minnesota Neuropathy Association and we had a presentation by the research scientist and doctors who developed some special "shoes" for helping people with diabetic neuropathy walk — aptly call Walkasins. It had not yet received FDA approval at the time but has now. The first video is of a test patient who had been home bound for several years due to diabetic neuropathy.
http://www.rxfunction.com/

John

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@johnbishop Thanks, John. I need to try something. Trying to ignore and buying over the counter stuff doesn't work. I'll read what you sent and see if I can do it. As far as taking meds, I don't think I have anyone who will prescribe anything. My endo probably doesn't even know about it. No point in mentioning it to him.
@retired teacher Carol

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@deankmn

@david33 Join the club of feeling like you are being given the runaround. So many doctors want to test you, diagnose, and then tell you they can do nothing for you. It is a very strange path to learn that you are fending for yourself. Try to read all you can from this site and Peripheral Neuropathy group in Chicago area that casts a wide net. I found I could not live with any of the anti-seizure medications and have found alternatives that have made my life reasonably symptom free over last 10 years. But never give up, your condition and your potential solutions may be different than anyone you will talk to regarding PN. Good luck, I wish you success asap.
MS probably refers to multiple sclerosis. Strange they would suggest it as possible, then not go forward with test for it.

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I am new to this site and get multiple multiple emails daily which I read diligently. I am trying to follow the conversations. It is a little bit confusing but I am looking for answers for my ideopathic neuropathy. I noticed you said you have found relief. Please share what you found. I too Do not want to take the anti seizure drugs or the the anti depressants. I have only been dealing with this for 8 months but it feels like a lifetime. I have tingly and pain n both feet. They are calling it small fiber neuropathy. But of course no cause. Does this drive anyone else crazy? All these neurologists and they can’t find the cause ! Has anyone with ideopathic neuropathy ever have it go away? Or am I doomed forever? I would love to see more posts on what treatments or medications that WORK!!
Thanks

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@judypall

I am new to this site and get multiple multiple emails daily which I read diligently. I am trying to follow the conversations. It is a little bit confusing but I am looking for answers for my ideopathic neuropathy. I noticed you said you have found relief. Please share what you found. I too Do not want to take the anti seizure drugs or the the anti depressants. I have only been dealing with this for 8 months but it feels like a lifetime. I have tingly and pain n both feet. They are calling it small fiber neuropathy. But of course no cause. Does this drive anyone else crazy? All these neurologists and they can’t find the cause ! Has anyone with ideopathic neuropathy ever have it go away? Or am I doomed forever? I would love to see more posts on what treatments or medications that WORK!!
Thanks

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Judy, I would like to reply to you, but it would be quite lengthy (neuropathy in my fingers makes that quite difficult) — send me a Connect private message — waiting to her from you

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@judypall

I am new to this site and get multiple multiple emails daily which I read diligently. I am trying to follow the conversations. It is a little bit confusing but I am looking for answers for my ideopathic neuropathy. I noticed you said you have found relief. Please share what you found. I too Do not want to take the anti seizure drugs or the the anti depressants. I have only been dealing with this for 8 months but it feels like a lifetime. I have tingly and pain n both feet. They are calling it small fiber neuropathy. But of course no cause. Does this drive anyone else crazy? All these neurologists and they can’t find the cause ! Has anyone with ideopathic neuropathy ever have it go away? Or am I doomed forever? I would love to see more posts on what treatments or medications that WORK!!
Thanks

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Hi Judy @judypall, I also have idiopathic small fiber peripheral neuropathy. As much as I would like to know why/what caused it, I realize it's not going to happen. The most likely cause in my case is hereditary according to my neurologist. To put it in a little perspective, I heard an 80+ year old neurologist from the University of Minnesota tell us at a meeting of the Minnesota Neuropathy Association something to the affect that "if you live long enough, you will get neuropathy…nerves die as part of the aging process". While mine has not gone away, I feel that I have been able to slow the process somewhat by taking some supplements. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

Liked by deankmn

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@judypall

I am new to this site and get multiple multiple emails daily which I read diligently. I am trying to follow the conversations. It is a little bit confusing but I am looking for answers for my ideopathic neuropathy. I noticed you said you have found relief. Please share what you found. I too Do not want to take the anti seizure drugs or the the anti depressants. I have only been dealing with this for 8 months but it feels like a lifetime. I have tingly and pain n both feet. They are calling it small fiber neuropathy. But of course no cause. Does this drive anyone else crazy? All these neurologists and they can’t find the cause ! Has anyone with ideopathic neuropathy ever have it go away? Or am I doomed forever? I would love to see more posts on what treatments or medications that WORK!!
Thanks

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Judy, I too have the same problem. I am still looking for someone who deals with this type of neuropathy. I have been dealing with this for a year…..

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@judypall

I am new to this site and get multiple multiple emails daily which I read diligently. I am trying to follow the conversations. It is a little bit confusing but I am looking for answers for my ideopathic neuropathy. I noticed you said you have found relief. Please share what you found. I too Do not want to take the anti seizure drugs or the the anti depressants. I have only been dealing with this for 8 months but it feels like a lifetime. I have tingly and pain n both feet. They are calling it small fiber neuropathy. But of course no cause. Does this drive anyone else crazy? All these neurologists and they can’t find the cause ! Has anyone with ideopathic neuropathy ever have it go away? Or am I doomed forever? I would love to see more posts on what treatments or medications that WORK!!
Thanks

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Dear judypall,

I truly understand what you are experiencing.

1) yes, the pain, tingling, etc. drives everyone crazy, at least me and those I have talked with.

2) There are many many unknowns in neurology, and most of what IS known has been identified in the past 20 years. We all want definitive diagnosis and a cure, believe me. In my experience neurologists are not withholding either diagnosis or cure. They just do to know in so many cases.

3) I believe neuropathy can improve if there is a cause that is identified and eliminated. These include Neuropathy caused by spinal nerve compression, diabetic neuropathy, alcohol induced neuropathy, and perhaps chemotherapy induced neuropathy. I believe there can be significant recovery when the cause is eliminated.

4) With a chronic condition like SFN, eventually we become accustomed to the 'new normal'l, while continuing to seek innovative treatments and diagnosis. 'Doomed' may be how we feel on our worst days. I recommend the book, How to Be Sick, by Toni Bernhard, who outlines strategies for living with chronic illness and pain.

5) What works for me?

Gabapentin (RX) (anti-seizure) to mostly stop the SFN in my skin, which makes it feel like it is on fire. Even my eye lids, lips and tongue are affected.

I take Wellbutrin (RX), an anti-depressant because I suffer from an inflammatory condition. Inflammation causes fatigue, pain, and depression.

I take Low Dose Naltrexone (RX) which is a new use of a drug that has been around. It help with pain I cannot take Codeine type drugs, or NSAIDS.

I take Methylprednisolone (RX) to combat my inflammation, as needed.

I recommend that people with chronic conditions seek consultation at a University Medical Center. My care is managed by Duke University Medical Center Physicians.

Meditation, relaxation, and mild exercise (preferable in warm water) go a long way to making life bearable.

I also see a counselor weekly, to share my concerns. Chronic illness affects our entire life, and the lives of those around us.
In therapy I examine my thoughts and feelings with a professional. I consider this an essential part of my life.

Judy, you are new, and I've been doing chronic conditions since 2002, but also had chronic severe eczema as child, so I've dealt with "the new normal' a long time My neuropathy is caused by an Immune Disorder, and has progressed significantly in the past 15 years. '

However, I think that people people with neuropathy experience everything from 'cure', to a stabilized condition, to progression.

Here you will read personal stories, and it helps to know you aren't alone.

Best wishes, 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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Correction to my post Feb 4. I developed sciatic in 2016.

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Judy, hang in there. My neuropathy started about 6 years ago. Some of it is caused by nerve clumping and surgical scaring and some caused by something else which was describe recently as oxygenation. Whatever the cause the pain and suffering can be terrible. Some days are really very bad and others OK. Not that it makes you feel any better but there are many of us that suffer from this.
I will be beginning two different treatments, one at the end of next week (for the surgical/stenosis cause) and one in the month of May. If there is any relief to my symptoms I will shout this from the roof tops so that others can benefit
I am presently taking supplements that have not seemed to do much. I will continue this because so many have found relief from this treatment even if it takes long periods of time. If you are interested in this let me know by private message on Connect.
Good luck, god bless and I do hope we all get better.

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@judypall

I am new to this site and get multiple multiple emails daily which I read diligently. I am trying to follow the conversations. It is a little bit confusing but I am looking for answers for my ideopathic neuropathy. I noticed you said you have found relief. Please share what you found. I too Do not want to take the anti seizure drugs or the the anti depressants. I have only been dealing with this for 8 months but it feels like a lifetime. I have tingly and pain n both feet. They are calling it small fiber neuropathy. But of course no cause. Does this drive anyone else crazy? All these neurologists and they can’t find the cause ! Has anyone with ideopathic neuropathy ever have it go away? Or am I doomed forever? I would love to see more posts on what treatments or medications that WORK!!
Thanks

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@judypall If you have completed all the diagnostic tests done to verify SFPN in only 8 months I consider you lucky. I waited over 18 months and got same idiopathic "I can't help you" response, all the while suffering without any treatments. If anyone in this community says they know what will help you, try to be suspect of the advice and learn more about it before testing it on yourself. We are all grasping for the magic pill to get rid of this. I stated I could not tolerate Gabapentin (Neurotin) as a treatment. But others here find it does give them relief. If you find it works for you and side effects are not bad (and your insurance will pay for it) why not use it? You can be bled dry (both financially and emotionally) by trying everything out there that others claim will work. I used laser therapy to get me off the gabapentin ( treats feet and lower spinal cord stimulation) but that was over $3,000 and could not continue due to cost. But it got me to a different and better place. I retired, removing several hour commute and stressful work life, and that has had major impact to get me to a better place. I then used TENS type device ($300) with foot pads at home each morning and night to introduce feet to different electrical inputs. After 2 years of this my condition is in a better place and I no longer find this useful. I am now looking into CBD oils as means to further improve. I do not expect a cure anymore, just a better "new normal". You are given unending list of ideas here, but don't expect any of them to be a cure. I hope you can find a better place in this condition each and every day.

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@johnbishop

Hi Judy @judypall, I also have idiopathic small fiber peripheral neuropathy. As much as I would like to know why/what caused it, I realize it's not going to happen. The most likely cause in my case is hereditary according to my neurologist. To put it in a little perspective, I heard an 80+ year old neurologist from the University of Minnesota tell us at a meeting of the Minnesota Neuropathy Association something to the affect that "if you live long enough, you will get neuropathy…nerves die as part of the aging process". While mine has not gone away, I feel that I have been able to slow the process somewhat by taking some supplements. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

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@johnbishop What a great series of video diagrams John! This helps put a concise message out there to let everyone know just how difficult this disease is to figure out. Too bad the good doctor cannot put one out on best approach to treatment regime. This website is really a great conduit for wide variety of symptoms and potential treatments for relief. Thanks everyone for your contributions.

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I have a question that I cant find an answer to…I had knee surgery 4 wks ago. I had a tear in the meniscus and cartlidge. 2 wks after the surgery I started having burning and stinging and numbness in both feet. It is more in the leg that had the surgery. Has anyone experienced this????

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