Living with Neuropathy - Welcome to the group

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

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

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.
https://www.youtube.com/watch?v=3FrQ7Glvgok

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.....

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

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

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.

@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.

@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.

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????