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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Nov 23 5:30pm | Replies (573)

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@boltz7555

Hi @johnbishop - sure, thank you for asking. I apologize in advance as I imagine this reply may get a bit wordy. For reference, I am a 44 year old female. I was just diagnosed with small fiber / autonomic neuropathy last month. However, I now believe my symptoms started as a child. For as long as I can remember, I’ve had quick sharp pains, twinges, tingling, etc. and my mom would say they’re growing pains. I’m pretty sure I haven’t grown an inch (maybe shrunk 😊) in the last 30 years, though I have always experienced those “growing pains”. Additionally, I was diagnosed with IBS, menstrual disorder and arrhythmia/irregular heartbeat all in my early 20’s. I’ve had chronic daily headaches for as long as I can remember. My neurologist said all but the headaches are related to the autonomic neuropathy. Prior to my SFN/AN diagnosis, I was going to my primary doctor more frequently because the widespread pain, depression and headaches seemed to be increasing. My primary prescribed Cymbalta to treat the pain and depression. It helped but overall I did not like it, as I mentioned. I went off the prescribed medication for several months except OTC (Advil/Tylenol) which didn’t help at all. I tried 100mg of gabapentin and it made me extra groggy with no benefit. I went back to my primary and she suggested I try low dose Amitriptyline (10mg) since I am very sensitive to medication. It took some time to adjust to the medication and definitely helps me sleep; I take it about an hour before bed. It didn’t do much for the pain but it helped my moods. Since it didn’t help with pain, my primary referred me to a rheumatologist in July 2021 who diagnosed me with fibromyalgia but suggested that I also see a neurologist. That’s where I finally started to get answers. I had my first appointment with the neurologist in Aug 2021 and he immediately suspected SFN. I really don’t think I had ever heard of SFN until he mentioned it. He scheduled a punch biopsy, one on my upper thigh and one just above my ankle. Results came back positive with the official diagnosis last month, Sept 2021. My neurologist and I talked about options to treat the symptoms and since I am too sensitive to gabapentin, we agreed to increase my dosage of Amitriptyline to 20mg (double). He said that’s still way low to treat SFN pain but we will continue a gradual increase. I have noticed a difference with the increased dose, although not a moment goes by that is pain free. I am adopted so I don’t have family medical history, although I am slowly learning a little about my DNA/family history (that “wordy” story belongs on some other forum 😊). I don’t have diabetes or any known underlying cause for the SFN so my neurologist has me going through a lot of tests to rule everything out before deeming it “idiopathic”. Lots of bloodwork, MRI, MRA, EEG and the full download with a cardiologist (EKG, echocardiogram, etc). My follow up appointment with the neurologist is 12/6/2021, which will give me time to get through all the tests and for the results to come back. I’m relieved to be getting some answers after years of not knowing why I experience the symptoms I have and even just now realizing that some of what I experience isn’t “normal” because I’ve lived with it for so long. Yet, I’m also a little anxious about what it all means, how it will progress, what my symptoms will be like in the future. But I am hopeful now as I finally have some answers. It’s a start. I’m grateful for this forum and the stories/experiences people are willing to share. ~Robyn

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Replies to "Hi @johnbishop - sure, thank you for asking. I apologize in advance as I imagine this..."

Good evening Robyn, @boltz7555. That's quite a story and thank you for sharing. It does sound like you ae reaching the end of the diagnostic phase. Will you please continue to share the results from your neurologist and the impact of any treatments that are recommended? This will help the virtually hundreds of folks who will read your continuing story. I am hoping that you will discover the value of a shared partnership with your clinicians and providers.

May you be free of suffering and the causes of suffering.
Chris