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DiscussionLiving with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Replies to "My name is Lorena and I am 65 years old. I retired as a nurse in..."
I was diagnosed with idiopathic mall fiber neuropathy about 5 years ago. I have seen 4 different neurologists, and 2 neurosurgeons. I have had every test in the books, and they all come back normal except for the skin biopsy and the sweat test. I spent a week at Mayo in Rochester a few weeks ago, and after MANY tests they still come back with idiopathic small fiber neuropathy. My pain is burning in both feet. I am taking a small dose of gabapentin, and Cymbalta 60mg. Both are basically useless. I was referred to Mayo’s Pain Clinic. I have opted for neuromodulation using a stimulator HF10 or a dorsal root ganglion stimulator. More than likely it will be the DRG.
Nothing works well for neuropathy, and research seems to be only for pain management. It’s cannot be cured. Neuromodulation is my last hope. For some, it can help tremendously. Since my pain is localized I have high hopes. Not sure if I will have it done at Mayo or at another pain clinic. It such an easy thing to do to see if it works BEFORE it’s permanently implanted. This should be interesting.
Hi @rnlorena
I had a sudden onset of tingling/burning all over following a Flu Shot in 2010. It was H1N1 Preservative Free Fluzone. Minutes after I got it my whole back felt sunburned. Then tingling/burning started in my upper body and moved down through my lower body. Those symptoms went on for several weeks then my hearing was affected by loud roaring for a month. My hearing is still affected and I use closed captioning on my TV. I also ended up with generalized weakness and had difficulty with everything - walking, getting up from a chair, driving, lifting groceries etc. I walked with a cane for nearly a year, and my strength never fully returned. I had a lot of Physical Therapy just to get stronger. I wonder if you have had any Vaccines lately that might have caused it? I also get stabbing pains behind my eyes and at the inner corners. My Corneal Specialist said they are neurologically related not an eye problem. I have Migraines, and feel they are related and so I take Fiorcet for them which gets rid of them. Ice Pick Headaches can cause them also.
NJH
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?