Living with Neuropathy - Welcome to the group

Hi @dunkinmacdougall, I see that you were welcomed to Connect by @amandajro and @jenniferhunter in another discussion. I'm not sure you saw their welcome and response so thought I would provide a direct link to the responses here:

-- https://connect.mayoclinic.org/comment/615617/
-- https://connect.mayoclinic.org/comment/615661/

I have degenerative arthritis in my lower spine and I also have small fiber peripheral neuropathy but numbness and a little bit of tingling are my only symptoms. I do have some aching in my lower back that keeps me from walking much or very far. It's good that you are advocating for your health and learning as much as you can about your condition. That is probably the best thing you can do to help yourself and maybe allow you to find something that provides you with some relief. Here are my sources for learning more about neuropathy:

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Google Scholar for finding most recent medical research information: https://scholar.google.com/

From my perspective, the U.S. is no better than Canada when it comes to the medical profession and research on neuropathy. I'm just a patient with no medical background but my experience is that only the symptoms of neuropathy are addressed and they do that with drugs. Since there are no drugs to address my numbness symptoms I started doing my own research to find something that helps me. I've shared my neuropathy journey along with other members in the following discussion that you may find helpful.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Hello, I have been reading comments and say to all prayers go out to u. I also have neuropathy. I was still walking until by back started hurting when I did, I am in the process now of seeing about the back - BUT feet r my main thorn in the side. Thank u for letting me read ur comments. It is good to see how others have reacted to this. I will chat later.

My name is Lorena and I am 65 years old. I retired as a nurse in the first week of march of 2021. Two days after I retired I woke up and had full onset of pin pricks and ant bite feelings all over. I also had pains in my eyes. I was awakened one night with a pain that went all the way across my lower abdomen. I got a neuro consult. They have tested my blood, they did the test for feeling, upper and lower EMG's. They did a skin biopsy of my right thigh and lower calf. I read up on small nerve fiber disorder so I could be prepared. I was diagnosed with it. Mine is non-length dependent. My EMG's were good. I do have right hand carpal tunnel. They also did an MRI of my brain and it was clean. They did a cervical MRI of my neck and I have degenerative spondylosis pretty much throughout the area. At the C-7-T-1 there is a small right paracentral disc protrusion causing some right lateral recess stenosis. I also did a right and left mouth swab to test for genetics. That is not back yet.
Normal for thigh is 9.1 and calf is 5.2. My numbers are Thigh is 1.21 and calf is 1.15. I was also checked for autoimmune diseases and was they were negative. My initial bloodwork form the neurology office was negative except that I was anemic. My iron was 2 points low. I have had my eyes checked and the ophthalmologist told me I had no damage to my eyes. I have continue to have the pains in my eyes. I am going back to him. I know that people can get dry eyes, but I read the symptoms and I do not feel like it is dry eyes.
I am very freaked out about this. I have been taking rosuvastatin for about a year and a half so I stopped it. I also stopped my pantoprazole. One of my nurse friends told me her sister had been taking Lipitor for 20 years and she woke up one morning with an onset of pain all over her body a level 9 and pains in her eyes. She stopped the Lipitor and her pain came down to a 1. I do take B-12 and D-3. My B-12 three blood draws ago was high. Then is was normal and this time it was high again. I asked if their were any other tests I should take. This will probably mean my small nerve fiber is idiopathic. I have had some pains in different places that have never happened before. I have also had brain fog. I think that I am very stressed out and that is why I am having the brain fog. I also have constipation and have had diarrhea. I have not been constipated in years. I am also sweating. It comes on and sweat pours from my head. I wonder if they are any other tests I should take. This all happened rapidly. So if the pain started the beginning of March and my nerve numbers are low what does this mean for me. I am still having prick pains and ant bite feelings. I feel like I will just have to wait for the other shoe to drop to fine out what else will happen to me. The onset was very rapid. I read that nerves can regenerate. Not having a diagnosis to go with this is hard. I don't feel the need to take any medicine for pain right now. I am taking Alpha-Lioic acid 400 mg bid. I asked the Neuro Dr. how many patients he had that woke up with this rapid onset and he said only two. That it is rare. So will my nerves just die and then I won't have any pain? I am not sure about much of anything right now.

The bottoms of my feet hurt so bad after I do my four block walk twice a day. Does anybody have a brand of socks that have very padded bottoms that might help me?

Hi Lorena @rnlorena, Welcome to Connect. To have the neuropathy develop overnight seems really strange and rare. I have idiopathic small fiber peripheral neuropathy and it started gradually more than 20 years ago. I can relate to being stressed out and having a lot of questions you are trying to get answered.

One of the best sites for neuropathy information is Neuropathy Commons - https://neuropathycommons.org/. Also, for diagnosing the different types of neuropathy, Dr. Matthew B. Jensen has some really good and easy to understand videos on his YouTube channel - https://www.youtube.com/c/matthewbjensen

You mentioned having pain in your eyes. Is it like a migraine headache or is it the actual eye that is painful?

Not a migraine but like shooting pains in my eyes. Also I was driving one day and I felt like something spattered in my eye. (nothing did) Sometimes it feels like fluid shooting through my eyes sometimes stinging and burning. It all happened at the same time. I wonder if I need to keep pursuing this. Maybe it could be something else that caused it. It is scary. I have read a lot of other peoples stories. When I went to my last visit I thought I was prepared because I had written down questions but I suddenly have more. I know that my nerves have just about burnt out. So I am not sure what is next.

My name is Lorena and I am 65 years old. I retired as a nurse in the first week of march of 2021. Two days after I retired I woke up and had full onset of pin pricks and ant bite feelings all over. I also had pains in my eyes. I was awakened one night with a pain that went all the way across my lower abdomen. I got a neuro consult. They have tested my blood, they did the test for feeling, upper and lower EMG's. They did a skin biopsy of my right thigh and lower calf. I read up on small nerve fiber disorder so I could be prepared. I was diagnosed with it. Mine is non-length dependent. My EMG's were good. I do have right hand carpal tunnel. They also did an MRI of my brain and it was clean. They did a cervical MRI of my neck and I have degenerative spondylosis pretty much throughout the area. At the C-7-T-1 there is a small right paracentral disc protrusion causing some right lateral recess stenosis. I also did a right and left mouth swab to test for genetics. That is not back yet.
Normal for thigh is 9.1 and calf is 5.2. My numbers are Thigh is 1.21 and calf is 1.15. I was also checked for autoimmune diseases and was they were negative. My initial bloodwork form the neurology office was negative except that I was anemic. My iron was 2 points low. I have had my eyes checked and the ophthalmologist told me I had no damage to my eyes. I have continue to have the pains in my eyes. I am going back to him. I know that people can get dry eyes, but I read the symptoms and I do not feel like it is dry eyes.
I am very freaked out about this. I have been taking rosuvastatin for about a year and a half so I stopped it. I also stopped my pantoprazole. One of my nurse friends told me her sister had been taking Lipitor for 20 years and she woke up one morning with an onset of pain all over her body a level 9 and pains in her eyes. She stopped the Lipitor and her pain came down to a 1. I do take B-12 and D-3. My B-12 three blood draws ago was high. Then is was normal and this time it was high again. I asked if their were any other tests I should take. This will probably mean my small nerve fiber is idiopathic. I have had some pains in different places that have never happened before. I have also had brain fog. I think that I am very stressed out and that is why I am having the brain fog. I also have constipation and have had diarrhea. I have not been constipated in years. I am also sweating. It comes on and sweat pours from my head. I wonder if they are any other tests I should take. This all happened rapidly. So if the pain started the beginning of March and my nerve numbers are low what does this mean for me. I am still having prick pains and ant bite feelings. I feel like I will just have to wait for the other shoe to drop to fine out what else will happen to me. The onset was very rapid. I read that nerves can regenerate. Not having a diagnosis to go with this is hard. I don't feel the need to take any medicine for pain right now. I am taking Alpha-Lioic acid 400 mg bid. I asked the Neuro Dr. how many patients he had that woke up with this rapid onset and he said only two. That it is rare. So will my nerves just die and then I won't have any pain? I am not sure about much of anything right now.