Living with Neuropathy - Welcome to the group

My Peripheral Neuropathy Story

My struggle with Peripheral Neuropathy symptoms started in the mid 1980’s when I was around 45 years old. Symptoms have progressed very slowly from numbness, burning and pain in my feet only when standing on very hard surfaces to my current long and confusing list of often debilitating symptoms. I lived with the foot pain for years without seeking any help but finally in 2003 the pain at night had gotten so severe that I couldn’t sleep and I reached out for help. I was fortunate enough to find a good neurologist who confirmed a Peripheral Neuropathy diagnosis and prescribed
600 mg of Gabapentin. This helped dramatically with the pain though it took me many months to adjust to some of the “drugged feeling” side effects.

I cruised along for many years with only moderate, Gabapentin controlled pain. My very helpful Neurologist moved away and from time to time, as pain levels slowly increased, my PCP increased the prescribed dosage up to 1200 to 1500 mg per day. During this time I saw 3 different Neurologists each confirming the PN diagnosis but only offering to increase Gabapentin levels. None of them seemed to take my situation very seriously.

Then in around 2007 I started suffering very unpleasant stomach and gut motility problems. After extensive gastroenterological testing no clear cause was found other than my PNA’s opinion that it might have something to do with nerve functioning. From that point onward my symptoms began to increase and they surfaced on and off with greater frequency. My symptom list includes: Chronic Fatigue, Weakness and greatly reduced stamina, poor coordination when walking, strange spacey sensations in my head, foot and ankle pain, sharp needle like pains in random locations, itching, diminished memory and inability to think clearly and stomach and gut distress.

Then in 2022 when the frequency of symptom “attacks” reached around every other week and usually lasted for 3 to 5 days I got a referral to a new neurologist who did extensive blood work, electrodiagnostic nerve conduction testing and a foot and ankle skin biopsy. The resulting diagnosis was Idiopathic Small Fiber Neuropathy with Polyneuropathy. His diagnosis included autonomic nerve problems especially related to stomach and lower tract.

So now in late 2022 the symptom roller coaster continues. I am very fortunate that most of the time 1200mg of Gabapentin helps control foot pain but all of the other symptoms come and go every few days and knock me out of commission for 2 to 4 days each time. Like so many others, with a similar symptom description, I am quite lost as to how to proceed. It seems that currently there is no real help to be found from the medical community though I am hopeful that current research will lead to some degree of relief for us all.

Thankfully I can share this struggle with others who understand our plight from direct experience. I get more help from reading this Mayo Clinic website than any other source.

Thank you for sharing your thoughts. I find that most doctors don’t think neuropathy is a real, painful and serious problem. Keep sharing your story.

Hi Colleen

Thanks for laying out the welcome mat. I am looking forward to learning and sharing as a part of this community.

I question the local neurologist that says my sensory poly neuropathy is caused by chemo. It has been almost 4years since my last chemo treatments. In my heart I think I have auto immune problems and chemo did not help but I don’t agree with it being primary cause. Curious to your chemo experiences?

Hi. I did some research on neuropathy caused by cancer treatment and it is a known side effect of cancer treatment. I was a basic researcher studying for my PhD before I became disabled so I had access to the university library. The articles were in peer reviewed journals.

Numbness can be a lot different things, hard to know without some diagnosis.

"Long-term numbness or a tingling feeling in the legs and feet may be due to conditions such as multiple sclerosis (MS), diabetes, peripheral artery disease, or fibromyalgia. The sensation may be felt in the whole leg, below the knee, or in different areas of the foot."
-- Numbness in legs and feet: Causes, symptoms, and treatment:
https://www.medicalnewstoday.com/articles/321560

Thank you. Having problems using this site