Living with Neuropathy - Welcome to the group

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.

Thank you!!

Hello--always find good information from our group. Can someone recommend a well-padded sneaker? My peripheral neuropathy is worse in my feet. Thank you.

Try Hoka. They are a walking/running shoe but are very cushioned. If you have a specialty running store in your area, they will have them and be happy to fit you.

Thank you so much for this information! Appreciate it.

Hello @tanilyn, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others.

Do you mind sharing what you were searching for when you found Connect?

Thank you very much. I was recently diagnosed w Peripheral nueropathy. It started as mononueropathy in my toes. Since thn it has spread to both feet and numbness and tingiling goes up both legs, making it difficult to walk. The feeling also goes up to my abdomen and back area, making it tight. They since put me on Gapapintin.. Which didn't seem to work, so the neurologist switched me to lyrica, which I seemed to be getting worst. Now, I'm back on gabapintin. He hasn't ran any test yet. It sort of seems like he's playing with my life. I am a diabetic. I just need a little guidance and support, since this is all new to me. Thank you 🙂

Try Hoka. They are a walking/running shoe but are very cushioned. If you have a specialty running store in your area, they will have them and be happy to fit you.

Just wanted to support the Hoka recommendation. very padded. They also have very padded, rubber slides for around the house.