Small fiber neuropathy?

Hi Steve - do you mean "get up" in the morning, or get up out of a chair? I definitely feel bad in the mornings. I rarely feel rested, and it takes a while for my body to adjust from sleeping to active. Then the dizzy spells start. So I find that I don't really feel well enough for dr appts, exercise, etc until at least late morning. This is so different from the person I used to be. It also means traveling has become impractical. I've traveled alone to NYC to visit my sons for the past 10 years. After my last trip, 18 months ago, I said "no more". I was sick for days. While in NY, I had dizzy spells, and bouts of diarrhea - in public places. The old me is gone, and the new me is controlled by pain, weakness, fatigue and my autonomic nervous system. If I need to know when the changes occurred, I can just look at my Facebook memories, or my old calendars, to see how much my life has changed. I am 64.
Wow, I'm really down this week. I do a remarkable job of getting through life with a decent attitude. Sometimes, like now, I do give in to self pity.

I am also 64. I have not had the debilitating dizziness with my SFN, but I had been diagnosed over 30 years ago with Ménière's disease right after having my
daughter. I understand what you are going through. My SFN happened so rapidly, that I feel like it's not even my body. I don't know what will happen next. Gabapentin helps with the burning, but my back pain is awful at times. I am just wondering if medications could also be causing some dizziness? I cannot lower my dose because the burning feeling is awful in my hands without it. I also just found out I have osteoporosis in my spine and arthritis. I was very active up until July of this year (my symptoms started at the end of May). It has been very overwhelming and depressing because my neurologist did not believe me; he told me I did not even have neuropathy. The biopsy was ordered by the rheumatologist, so now I feel validated. Still, I have to find another neurologist.

I am very depressed at times. I think you replied to me on another thread. How do you stay positive?

Hi Jan. One thing in my favor is that my SFN came on slowly, so the changes have occurred gradually. Maybe John can find my Tegretol story for you.
I am a positive person by nature. How could I survive otherwise? Facts: I divorced after 30 years, but my ex-husband still will help me, and I help him. My long-time girlfriends (from church!) are slowly drifting away as I become less able to do the things I they enjoy, such as shopping, gossiping, meeting for long brisk walks. But through careful choice, I am surrounding myself with other friends, the ones who understand, and are kind, and will spend the day driving me to UAB for medical appointments.
I do volunteer work. Having to quit my beloved profession was and still is painful. But I’ve always been a caregiver, so I do the things I can do. Fostering kittens is hard work but lots of endorphins! I’ve learned to limit the way I do that.
I am a gardener. I’ve modified my expectations. I work in small bursts of time, and have purchased tools that make it easier and less painful.
I am a nurse, so I’m exceptionally good at evaluating my progress and medications. Antidepressants help, not only with depression, but also nerve pain. Find a great medical team and work with them, even if it’s in another city. Be ready to try and discard lots of medications, therapies and theories until you hit the right combination. I had genetic screening done, because my sister has the same symptoms. It did not show anything yet, but new research is happening all the time.
Lastly, but most importantly, I am a lifelong Christian, and have always been a “church lady”. I am in my pew worshipping every Sunday, sometimes late, sometimes wearing sunglasses when I’m dizzy, and sometimes shedding a few tears. I’ve chosen to sit with people who genuinely care about me. Outside of church, I pray - some days more than others, when my suffering or sadness are particularly bad.

Hi Jan. One thing in my favor is that my SFN came on slowly, so the changes have occurred gradually. Maybe John can find my Tegretol story for you.
I am a positive person by nature. How could I survive otherwise? Facts: I divorced after 30 years, but my ex-husband still will help me, and I help him. My long-time girlfriends (from church!) are slowly drifting away as I become less able to do the things I they enjoy, such as shopping, gossiping, meeting for long brisk walks. But through careful choice, I am surrounding myself with other friends, the ones who understand, and are kind, and will spend the day driving me to UAB for medical appointments.
I do volunteer work. Having to quit my beloved profession was and still is painful. But I’ve always been a caregiver, so I do the things I can do. Fostering kittens is hard work but lots of endorphins! I’ve learned to limit the way I do that.
I am a gardener. I’ve modified my expectations. I work in small bursts of time, and have purchased tools that make it easier and less painful.
I am a nurse, so I’m exceptionally good at evaluating my progress and medications. Antidepressants help, not only with depression, but also nerve pain. Find a great medical team and work with them, even if it’s in another city. Be ready to try and discard lots of medications, therapies and theories until you hit the right combination. I had genetic screening done, because my sister has the same symptoms. It did not show anything yet, but new research is happening all the time.
Lastly, but most importantly, I am a lifelong Christian, and have always been a “church lady”. I am in my pew worshipping every Sunday, sometimes late, sometimes wearing sunglasses when I’m dizzy, and sometimes shedding a few tears. I’ve chosen to sit with people who genuinely care about me. Outside of church, I pray - some days more than others, when my suffering or sadness are particularly bad.

@julbpat You should write a motivational book! As I was following this thread, you hit me with the part of “friends slowly drifting away”. For me, I thought the major drift was because so many of my high school friends fled our very small home town (and state) and got busy with spouses, children, work, and life in general that it was hard to travel and meet at very specific times other than class reunions spaced 5 years apart; and even that was like herding cats.

Until…….. This is the year I turned 60. I had planned to treat my birthday just like any other year. But, you have to love Facebook! My old clique, my 8 best girlfriends throughout high school, had their big 60th year birthday bash by all flying into a specific city and making a week of renting a house, wining, dining, touring mansions & taking ghost walks, walking beaches & sunbathing, more late night partying & dancing, gossip and nightcaps…. I didn’t get an invite. It kind of hurt seeing the pictures. But you know what? I have no doubt they know I was missing from the pictures. I have no doubt that I was part of the “gossip” (I prefer to call it reminiscing, and they probably pity me a little). I have no doubt that while they all had a wonderful time, that they struggled with the decision to not include me in all celebrating our 60th year together. A person who can’t walk without assistance (and in this case also no longer drinks) is a big party pooper and drag for folks wanting active fun! I do wish they’d told me they were doing it though, as awkward as it might have been. But it’s all part of this understanding and acceptance we have to learn to face, isn’t it? I looked at all the fun pictures, liked a lot of them, commented on some of them because I was glad they were all having a fun time with 60, and then a couple of pictures made me thankful I didn’t drink any more 🙃 because they were partying like they just turned 21!

I’m glad how faith helps you through the new phases we just have to embrace. It is indeed a mental exercise to stay positive, and those of us fortunate to have great partners are very lucky. I think having to move states like we have has helped me in that by starting over, you’re finding friendships all over again with your new set of abilities. I’m not part of the “tennis” or “pickleball” circles, but we do have active people who also like the pool, sit-down activities and social events. I’ve learned to enjoy watching people too, but there’s nothing like a good James Patterson book when I have quiet time. I keep thinking about what young @njed keeps reminding, “Focus on what you CAN do!”. Thanks for your positive read today!

Oh my, that must hurt to see your friends that way. I’m so sorry. Your approach is amazing though. I try to stay off FB, though I’m sure it works for others.

Do you mind saying if your mobility issue is caused from numbness in the limbs or weakness?

My mobility is caused by weakness primarily. In 2016, I was stricken over a 10 day period by severe increasing leg/arm weakness accompanied by a UTI & kidney infection. On the 10th day and finally in a hospital, my knees finally buckled and I remained in a wheelchair for 6 months with extensive physical therapy that made great gains in strengthening my legs and getting balance to where I can waddle around unassisted for small distances now; but I cannot climb, do small steps or even a curb without help or a cane/walker. I cannot run, skip, or hop, but am grateful for what I can do and for being out of a wheelchair & able to drive. My hands are limited but I can now handle forks & knifes & TP!

In the hospital they tested for Guillain-Barre but it came back inconclusive because they did not obtain enough spinal fluid to test. They didn't retest because the hospital facility itself was not so specialized for neurological issues. I later went to Duke who says it's a possible I had post-infection disorder similar to GBS but there would be no treatment available for it regardless. So we're not exactly sure, but I have been tested for a lot of things that have been eliminated. I am officially labeled as Idiopathic Axonal Sensorimotor Peripheral Neuropathy, but I have never been tested for SFN. My symptoms seem to overlap both though: extreme sensitivity of hands & feet to cold (and heat); numbness & tingling from elbows to fingers, knees to toes; inability to sweat properly in heat; and general balance & weakness issues. My PN comes with a bit of pain that is managed well with Gabapentin.

So that was the long answer to the causes of my mobility issue. I spent a lot of time trying to get an exact cause so I could get an exact cure. My number one priority now is to keep strong with activity and physical therapy so I do not get worse and can live the best life possible!

My mobility is caused by weakness primarily. In 2016, I was stricken over a 10 day period by severe increasing leg/arm weakness accompanied by a UTI & kidney infection. On the 10th day and finally in a hospital, my knees finally buckled and I remained in a wheelchair for 6 months with extensive physical therapy that made great gains in strengthening my legs and getting balance to where I can waddle around unassisted for small distances now; but I cannot climb, do small steps or even a curb without help or a cane/walker. I cannot run, skip, or hop, but am grateful for what I can do and for being out of a wheelchair & able to drive. My hands are limited but I can now handle forks & knifes & TP!

In the hospital they tested for Guillain-Barre but it came back inconclusive because they did not obtain enough spinal fluid to test. They didn't retest because the hospital facility itself was not so specialized for neurological issues. I later went to Duke who says it's a possible I had post-infection disorder similar to GBS but there would be no treatment available for it regardless. So we're not exactly sure, but I have been tested for a lot of things that have been eliminated. I am officially labeled as Idiopathic Axonal Sensorimotor Peripheral Neuropathy, but I have never been tested for SFN. My symptoms seem to overlap both though: extreme sensitivity of hands & feet to cold (and heat); numbness & tingling from elbows to fingers, knees to toes; inability to sweat properly in heat; and general balance & weakness issues. My PN comes with a bit of pain that is managed well with Gabapentin.

So that was the long answer to the causes of my mobility issue. I spent a lot of time trying to get an exact cause so I could get an exact cure. My number one priority now is to keep strong with activity and physical therapy so I do not get worse and can live the best life possible!

I didn’t remember your exact story, so I’m glad you retold it. I just bookmarked this (using the three dots to the right). I’m going to try to use bookmark more .