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My 29 year old daughter was diagnosed with idiopathic sfn by a punch biopsy when she was 23 on the day she was celebrated into the Physical Therapy Doctoral program at Vermont University. She dropped out because she could not bare studying about something she had. She was told it was probably viral and would go away. She had no pain but just tingling and twitching in legs. A few days ago and six years later sfn has returned with extreme burning and stabbing all over her body along with some other symptoms. She is too terrified to read or research. She was in the best place of her life in her career working in cardiology ( echos ) , athletic and getting ready to travel. So the answer to your question is I am trying to find out where to take her and how to get in so that she can find the cause and reverse it ,cure it , treat it. Her original Neurologist will not see her until the end of Jan as a new patient.
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My situation is similar to yours I am researching for my 38 year old son. Very athletic and health conscious but had a run with stress and anxiety about a year ago (lasted for a year), then became stricken with SFN. 6 months to get diagnosis and 100% of the 4 doctors said he was likely bipolar, depressed and just to take meds. This had nothing to do with anything. He was depressed and moody because of the SFN. Unbelievable the frustration we went through. We even were told he needed to detox after taking the prescribed benzos for anxiety, which he was willing to do but he was not addicted, just suffering from SFN. The facility treated him like he was an unruly addict as well - again adding to the anxiety. He has terrible balance issues and is trying to raise a toddler and still have a career and a life. The only thing we can think of that triggered this was stress and/or he did have semi mild case of COVID. He does not take any meds now because of the horrible nature of the physicians trying to just prescribe anything. Is there any link to high stress and SFN? We all want some hope - is there anyone out there that has recovered from SFN?
Hi,
I put my two cents worth in here before, but I feel there is a little hope.
I have had symptoms of neuropathy for 30 years. I was not diagnosed until 2016. I started feeling a little "different a few months before it knocked me down. Then, my daughter flew in from Oregon to take care of me. ( I am in PA) My feet were screaming! I actually could not sit or lie down I had to keep moving to have less concentration of the intense pain! No pills or anything helped...UNTIL I started taking CBD. I am still in some pain, but it is tolerable! HUGE difference from 2016, even though PN is progressive! I make myself exercise, even though I actually don't like it, but it makes a difference! All this to say, it can get better. Best wishes, I hope you can try the CBD!
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Hi @demidio, I'm hoping you can help your daughter find some relief and answers for the burning and stabbing pain. It is very difficult for others to understand this struggle but she is not alone and sometimes that can be helpful. There is no magic bullet or cure for neuropathy but their are treatments for the different symptoms. It might be helpful to read through what other members have found helped them in their journey with neuropathy --- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
@katec has a similar story doing research for her son and may have some thoughts to share with you.