@dstone501957

Have you had your thyroid TSH, T3, T4 and TPO levels checked? I have Hashimoto’s thyroiditis which is autoimmune plus hypothyroidism post lobectomy and there are ties to cold/temperature sensitivities. I also have idiopathic small fiber neuropathy and peripheral neuropathy. I have had burning facial rashes that seem connected to trigeminal nerves and tinnitus/hearing loss/pressure and told by an audiologist I should get checked for Ménière’s disease. I have had hearing loss in both ears over time so told it may not be Meniere’s but may be AIED.

My neurologist told me there unfortunately is no cure for small fiber neuropathy. They can only treat the underlying cause if found and SFN symptoms. I take a very low dose of gabapentin (100mg) but it makes me dizzy/tired. Doesn’t really help much and has long term side effects you should look into. Sometimes medications can cause toxicity which can be a cause for SFN.

Have you been assessed by ENT for autoimmune inner ear disease (AIED)? Have you had COVID/vaccine or chickenpox/shingles? Certain viruses can affect your nervous system and stay dormant for periods and then get activated causing symptoms but always stays in you for life (the viruses that are the “gifts” that keep on giving are chickenpox/shingles, Epstein Barr Virus that causes mononeucleisis, Herpes viruses (HSV1/HSV2), etc. You can get bloodwork to check for these viruses (if dormant or active). Have you had MEIs of your cervical spine and head to look more closely at what may be causing your symptoms if there is a nerve or vascular cause?

@dstone501957
P.S. My autocorrect changed my MRI to MEI. I have had head, cervical, thoracic, lumbar and hip/pelvis MRIs to investigate my many pain symptoms so feel like a MRI specialist. 😉

I meant to also ask you if you had bloodwork to check vitamin b12 and b6 levels since deficiency or toxicity could cause SFN. I, like you, just feel unwell most of the time now. I wonder if I have long COVID now which may be behind some of my symptoms.

I do take alpha Lipoic acid and Acetyl l carnitine supplements for small fiber neuropathy. I started taking that when my feet started burning in 2017 (my first SFN symptom). SFN and peripheral neuropathy seems to have traveled up my legs and arms. My cervical spondylitic myelopathy has caused some permanent spinal cord injury. I have so many symptoms I can't tell what is causing what anymore. I am 54 years old and believe I will need to accept my disability, do my best to take care of myself, treat symptoms to help improve quality of life, etc. I have been on an 8+ year journey seeking answers and I am tired. Many doctors do not know how to treat many conditions and many are not curable but doctors don’t seem comfortable telling patients the truth of their conditions so you get the runaround of false hope.