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Autoimmune illness and small fiber neuropathy
Neuropathy | Last Active: May 28 9:29am | Replies (51)Comment receiving replies
Hello, I’ve been diagnosed with small fiber neuropathy that is progressively getting worse. It started 20 years ago with what my Doctors thought was endometriosis burrowing into the back of my pelvis and damaging the nerves. This caused “labor” type of pain from my sacrum into the rectum and causing shooting pains from the pelvis down my legs and around to my chest. It was absolutely horrible. I had a oophorectomy without estrogen replacement and this did nothing to help the Pain. I finally connected with a neurologist who treated me with neurontin, ibuprofen, and tramadol. I had flares of pain for 17 years but I could always get it back under control. After 17 years pain started in my feet, spread to my legs, arms and hands. This pain is horrible (aching, stabbing, squeezing, burning, numbness etc.). I was referred to a Well known UC pain clinic a few months ago. They did lots of blood tests. The only positive results were ANA and smooth muscle ab titer. There is a possibility that I have an autoimmune disease that may be causing the small fiber neuropathy. They are referring me to GI and rheumatology. It is a very long process especially when you are in agony. I worked as a school nurse for 15 years and I never took a sick day so I can handle pain. This is worse than child birth. I also recently developed changes with my digestion and temperature regulation.I don’t know if these are autonomic symptoms. This is a horrible, lonely condition.
Have you ruled out Type 2 Diabetes or pre Diabetes and an autoimmune disease? My A1Cs are good so I don’t have Diabetes or pre Diabetes.
Replies to "Hello, I’ve been diagnosed with small fiber neuropathy that is progressively getting worse. It started 20..."
@jgraber <<…pain started in my feet, spread to my legs, arms and hands. This pain is horrible (aching, stabbing, squeezing, burning, numbness etc.).>>
Your afflictions/condition sounds awful! Regrettably, I’m going through your described pain progression at present, SFN starting in my feet ~2.5 years ago. Systemically, it feels like a large hand squeezing with a tight grip all over. This and IBS followed living with MECFS for 30+ years. I believe they are all interrelated neurologically but I can’t find much research to confirm or deny this but each is neurological in origin.
One young neurologist is suggesting a lumbar puncture to see if I’m eligible for IVIG treatment which he says works in about 30% of cases. I’m equivocating whether or not to go this route due to time, expense and uncertainty but the overall progression systemically is causing an incapacitating malaise with awful symptoms like insomnia and anxiety, not to mention the loneliness of isolation. I’ve otherwise been using Oxcodone and Methadone for the pain but this is getting less effective and will likely have to stop. Have you considered IVIG?
I was diagnosed with small fiber peripheral neuropathy in 2019. It apparently is from a undetermined autoimmune disease. I was also diagnosed with chronic Lyme disease (not at Mayo) which is more than likely the cause of my neuropathy. Over the past year my symptoms have gotten worse. Pins and needles pain in my feet (hard to wear shoes) and whole body burning. It’s
becoming difficult to do much of anything. Have any of you had Lyme disease that caused your neuropathy?
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Good morning @jgraber and welcome to Mayo Connect. We’re a group of patients and patient’s families and caregivers. We try to help each other with information and resources and what we have learned from our own health journeys. Since we are not doctors, we cannot diagnose or prescribe medications.
And, yes, this can be a lonely condition. But know that everyone is here for you. You are not alone.
Here is a link to another discussion on small fiber neuropathy that may interest you.
https://connect.mayoclinic.org/comment/98171/
Has it been suggested that you see a rheumatologist?