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Recently diagnosed with Small Fiber Neuropathy - so many questions
Hello, I am a 44-year male just diagnosed with Small Fiber Neuropathy (SFN). In addition to the numbness and tingling in my feet and hands, I started experiencing facial flushing, chest pain, orthostatic hypotension, and digestive issues last year. It took me nearly a year and more tests than I can count to finally arrive at a diagnosis.
I have so many questions, but the neurologist that diagnosed me is so hard to get a hold of. In fact, I haven't even met with her yet - she just called me to tell me the diagnosis and prescribed me Lyrica. To be fair, she's an expert on this condition, but there's one of her and so many of us.
Admittedly, I am scared. I hope I may share some of my questions with this group. Thank you in advance for your support. My questions are:
1.) Is there an association or definitive resource (like the American Heart Association) I can research?
2.) What are some of the health care facilities that do research on this condition? Would it help to come to the Mayo Clinic to speak with experts on this? It feels no healthcare practitioner knows what I am talking about when I mention SFN. I can't tell you how many doctors told me I had anxiety and suggested SSRIs.
3.) Will this get worse? Is it fatal? What else can I do to treat/manage symptoms? Are there alternative forms of treatment? The side effects of Lyrica seem pretty extensive, and the 'significant weight gain' seems like it would be something I would want to avoid given all the things I am experiencing.
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I am only taking 300 mg of Gabapentin per day. One pill at nighttime. I wonder why it's such a low dose compared to what your taking??!!
@emf21 I always thought I was taking a high dose at 2400mg (800 3x)! If I recall when I started out on lower does 5 years ago, my main discomfort was the heat & cold in extremities, so bad I slept with double gloves and socks, then naked & miserably burning, interchangeably throughout the nights and days. Gradual increases over a year to 2400mg a day has made that much more tolerable inside a home, though not perfect when using hot/cold water or when outside facing extreme weather temperatures. It also manages the nerve pain I seem to have more of when I have to miss or delay a dose. My shining light at this point is that I don’t take other meds of any type for my idiopathic neuropathy (except some vitamins), as my balance issue and liver are already taxed. If you are managing on a low dose of Gabapentin, especially without other meds, I am happy for you!
Hi maveric09... I feel for you. I have more questions for you.
Within the last year I and another member of my family (; not same house); suddenly had unbearable back spine nerve pain. No preceding back pain. I coincidentally noticed it lined up exactly with the ????? Vaccine. His also. During my research I found something called Myelitis - which is the cover on your nerves crumbles. I learned they don't even look for this until paralysis sets in. Then , if caught early enough can be reversed .
My question for you ( because my neurologist appt is mid April) Do they check for this crumbling of the nerve covering for other severe nerve pain and damage,??
If it can be treated and reverse paralysis, can it be reversed if checked earlier, before damage is done to other parts of the body .
No, I'm not paralyzed so doctors I've seen have to Google it, and " this is soooo rare you don't have it". But it is not that rare after a ???? Vaccine. And NO , they won't check for it
Hoping you keep sharing and asking questions... I believe I am a little better after 11 months..
I believe you will find answers. Thank you
Keep asking questions, please.
Both the AstraZeneca and J&J vaccines have warnings about transverse myelitis, which is supposedly rare. I had symptoms consistent with inflammation of the spinal cord after Pfizer vaccinations. Others on the Neuro V Long-Haulers Facebook group have reported these symptoms after the Pfizer vaccine. Now 11 months later, I have nerve pain in my feet that is aggravated by sitting. But I'm improving, so my doctors and I aren't pursuing treatment at this point. If you still have concerning symptoms, I would ask for a referral to the best neurologist you can find and preferably at an academic medical center.
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1 ReactionInteresting that you are using CBD tinctures and topicals. I have SFN and have been taking Gabapenten and Duloxetine. I had some CBD tincture on hand and decided to rub it on my ankles and legs before bed. It helps!
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1 ReactionOh, I forgot about using tinctures as topicals. Good idea and I am thrilled that it helps.
Chris
Thank you so much Chris. I was diagnosed via skin biopsy. I wasn't told what type i have but I can confirm I am not diabetic or prediabetic. I do have Hashimotos Thyroiditis, and my doctor said that it may be an underlying condition although she said it could also be idiopathic as my hypothyroidism is well managed with Synthroid. What I'm finding very discomforting is the best pain. It radiates from the center of my chest across my ribs. I've been to the hospital many times thinking I am having a heart attack, but multiple EKGs, a cardiac MRI and a CT Angiogram have all but ruled out any heart disease or dysfunction.
Also I learned that the Mayo Clinic declined my case despite having a positive skin biopsy confirming SFN. That was really disappointing because. I was hoping they could help me with a treatment plan.
Thank you Taml. I still haven't seen my diagnosing doctor. Although she confirmed my SFN diagnosis by phone, she still has me testing for underlying neurological disease. I'm doing a Neuropathy panel this week. I do not know what that tests for. What I want to know is if tht chest pain I've been feeling is related to SFN. My Neurologist said it might be related as SFN. I've read here in other threads that chest pain can manifest with SFN but it may be due to anxiety. What I'm feeling doesn't feel like anxiety though. Happens when I'm cool and calm as a cucumber.
I take 2400 gabapentin and it doesn't do anything really. And I tried other drugs too and many other therapies. My type 2 diabetes is under control and my only real concern now is the daily pain when my nerves in my feet flare up. It is torture living like this. My theory is that the pain is in our brain or processed by our brain. How do we stop the pathway from our feet to our brain? Creams and all that on the skin won't work. Any ideas?
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