Treatment options that have worked for Small Fiber Neuropathy

Hello
I have small fiber neuropathy in my feet. I started amitriptyline a few weeks ago and have some pain relief. Side effects are tough to deal with-brain fog and fatigue mostly. I feel like this medication takes the edge off the pain and I am not constantly thinking about it.

Hello @moakes and @martame, Welcome to Connect. I'm sorry to hear that you have joined the neuropathy club. I shared my neuropathy journey story in another discussion here - https://connect.mayoclinic.org/comment/310341/. Unfortunately there really isn't a cure for neuropathy but there are many treatments that may or may not help with the different symptoms. The best thing we can do as patients is to learn as much as we can about our condition and what treatments are available that might provide some relief.

To learn more about neuropathy, here are my two favorites:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
--- Neuropathy Commons: https://neuropathycommons.org/

There are also many different discussions here on Connect where you can learn what other members have found helps them. Here is a link that shows the different discussions and comments for "small fiber neuropathy what helps" -- https://connect.mayoclinic.org/search/discussions/?search=small+fiber+neuropathy+what+helps.

It sounds like you have tried a few of the alternative treatments as well as the medications used for neuropathy pain but the symptoms seem to be getting worse. The Foundation for Peripheral Neuropathy has a fairly comprehensive list of the complementary and alternative treatments for neuropathy here - https://www.foundationforpn.org/treatments/.

Were your doctor or neurologist able to identify any possible causes of the SFN?

@johnbishop thank you so much for the resources. I'll definitely check them out. Unfortunately I have seen a primary care doctor, 2 neurologists, and a rheumatologist and they can't seem to find a cause. I have had many tests and scans done as well as a skin biopsy but no real root cause. I had a positive ANA test which can indicate an autoimmune disorder but the neurologist also said it can be positive for healthy adults. I feel like there is still something there to investigate but the neurologists seem stumped at this point. not giving up on finding the cause or seeing what treatments might help.

I requested an appointment at Mayo Clinic but was turned down as they stated they have more requests than appointments available and based on what I have done so far they didn't know if they could do anything further. I was really disappointed by this decision as I know they are the best hospital in the world and hoped they could take what I had done so far and help me find a cause and solution to help.

thank you for the response. I'll share anything that I find that helps me as well.

I have neuropathy on my feet from unknown cause and a positive ANA as well and I was also turned down by Mayo and I am looking for a recommendation for a good Neurologist .

I'm not sure what area you are in but I'm in the Kansas City area. I could tell you who I have seen here if that helps at all.

Hello @bhenrickson17, I would like to add my welcome to Connect along with @moakes and others. Sorry to hear you were turned down by Mayo for seeing a neurologist. If you tried getting the appointment by yourself, you might want to see if your doctor or neurologist who diagnosed you with idiopathic neuropathy can provide a referral to Mayo Clinic to see if that might work to get an appointment. There is another discussion you might find helpful since you mentioned having a positive ANA.

--- Need diagnosis! Circulation issues and neuropathy with ANA escalating: https://connect.mayoclinic.org/discussion/need-diagnosis-circulation-issues-and-neuropathy-with-ana-escalating/.

There are also a few other related discussions and comments by members with neuropathy and a positive ANA that might be helpful to read through - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20and%20positive%20ANA.

Do you mind sharing a little more about your diagnosis and any tests you had done?

Hello. I was diagnosed with peripheral neuropathy . The test used was EMG. My Neurologist and my primary care doctor sent referral letters to Mayo and I was denied twice . Neuropathy is too common and they receive too many requests . I am disappointed .

@colleenyoung shared some tips in another discussion where a patient was denied an appointment with neurology that might be helpful. Here is a link to Colleen's post in the discussion - https://connect.mayoclinic.org/comment/315571/.

@johnbishop Hi John - If I recall correctly, I believe you were accepted at Mayo in Rochester. I was accepted as well. Are you able to share with us why you think you were accepted at Mayo Clinic? Thanks. Ed