Living with Neuropathy - Welcome to the group

I have an apt scheduled- in June I started feelings prickly sensation in my hands and feet, then it stopped until the end of September. At that time I started with what I call buzzing sensations- it’s not prickly so that’s the only way I can describe it. I go to sleep with these sensations but when I wake up before I move, I don’t feel it until my feet hit the ground, then it’s non stop for the rest of the day. However I have noticed the last few days right as I’m waking up, I do have slight buzzing but in my right foot. Has anyone experienced this with neuropathy? Are symptoms different from person to person? My mom and sis both diagnosed with this but said they feel the sensations even upon waking. Their only diff is my moms feet burn and my sisters do not. I’ve driven myself crazy researching and come up with more questions than answers. TIA

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.

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.

Reply @jhumm sorry to hear about your situation which is somewhat similar to mine. Although my Small fiber neuropathy is also labelled as "ideopethic" I suspect ciprofloxacin antibiotics to be the culprit in my case. I have severe pain and numbness at the bottom of my feet with numerous other issues similar to what you have described. I have tried all kind of therapies and remedies but to no avail. I suggest you become member of a facebook group called "Fluoroquinolones Toxicity ", which I am sure can give you additional ideas based on experiences of that group. Since we are labelled as "ideopethic " we need to explore all avenues that are available. I wish you a speedy and permanent relief.

I totally understand. Good luck and let us know if you find anything that helps. Gabapentin was a miracle for a month or so. Thank you for sharing.

Welcome Tia @xian121905, You will notice that we moved your post into an existing discussion on neuropathy so that you can meet other members discussing their symptoms. You are not alone with your symptoms. Symptoms do vary from person to person depending on their diagnosis and other conditions. Dr. Google can make you crazy on your research journey. Here are my favorite sites to learn more about neuropathy.

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- My favorite search tool - Google Scholar: https://scholar.google.com/

You mentioned that you have an appointment schedule in June. Is it with a neurologist? Have you had any tests yet?

I will definitely pass along anything I find that might help relieve our mutual suffering. So far Gabapentin for pain moderation has been the only useful tool I have found. Some of the other symptoms I have mentioned have actually been the most debilitating for me for the past few years. It might be that finding a reliable way to begin to repair damaged nerves, regardless of cause, could be the most direct route out of this pain filled maze. Stay strong and keep a hopeful heart.

Hi, I had testing done a few years back but nothing currently. I’m hoping the neuro can help. Are there tests I should ask for specifically