1. < Neuropathy

Its just been two weeks, could this be Small fiber neuropathy?

Posted by italapino @italapino, Feb 16, 2019

Hi all. I am new to the group and have on my journey of getting confirmation of SFN. All started tweeks ago. Started with mild pins and needles on hands and feet and lasted for 5 days. The next day my feet to knees and fingers to forearms felt sensitive to temperature and felt sunburned. The skin sensitivity has now spread to random and more places with intermittent burning. My hands and feet get cold and wet real quick now, I wake up with full on adrenaline with what feels like trembling, light winded quicker, noticeably dry eyes/mouth sometimes, my feet and hands more like ache/throb, today a pinky has been a little bit more stubburn. I saw a neuro last week and he said its nothing of a concern and its rare that neuropathy progresses that fast. Has everyone else had that fast of a progression in relation to your neuropathy? I'm getting a second opinion with Mayo in Arizona in a couple weeks.

A little background, January I had some bouts of non-rotational vertigo and developed tinnitus and both have since gone away. ENT ruled it as possible eustachian tube dysfunction. The meds I took for that were, sinus flushes, nasal spray (flonase), meclizine, and ativan. My first neurologist stated that these meds would not have caused what I am feeling now.

Interested in more discussions like this? Go to the Neuropathy Support Group.

cbcbasket | @cbcbasket | Mar 16, 2019
In reply to @jenniferhunter "@cbcbasket I am a spine surgery patient and I had the same symptoms you described from..." + (show)
@jenniferhunter

@cbcbasket I am a spine surgery patient and I had the same symptoms you described from cervical stenosis. Surgery helped me a lot. I know you are describing the effects of chemo and radiation causing symptoms. It's possible there could be more than one cause for your symptoms, and if you do have spine related symptoms, there might be a fix for that part. I have had problems missed like thoracic outlet syndrome because of overlapping symptoms with something else like carpal tunnel. If spine issues have not been ruled out, you might want to consider it. If you had a whiplash in your past, there could be an undiagnosed spine problem that is causing symptoms. There could also be nerve entrapments in your arms and chest, and even TOS can cause this type of thing.

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Thanks, but I saw both and orthopedist and neurosurgeon, and had multiple scans. Not cervical.

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boo55 | @boo55 | Mar 17, 2019

All of us seem so baffled by what causes this SFN. I believe my issue was there was always some low grade numbness for years and than some sort of " spark " threw it into full blown SFN. I was prediabetic and got my numbers down by diet and will continue to monitor. But the symptoms are all still there and worse. UGH..

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saraf805 | @saraf805 | Mar 20, 2019
In reply to @italapino "How are your symptoms now? It seems that symptoms come and go and vary every week...." + (show)
@italapino

How are your symptoms now? It seems that symptoms come and go and vary every week. I had my appointment with Mayo Clinic last week and did Autonomic testing and testing my blood. He definitely suggested it was small fiber neuropathy and next to do a skin biopsy. I am awaiting my followup now.

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@italapino Some days are better than others, but it's alway there if you know what I mean... Have you received your results yet? My symptoms initially came on very suddenly, but now have plateaued.

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deankmn | @deankmn | Mar 20, 2019

@italapino You know your varied and strange nerve responses give me recall to the bout of tick borne illness I had in 2016. I had been free of my really bad PN symptoms of electrical shocks in feet for over 3 years but then all of a sudden had the strangest onset of these pains while sitting in a very comfortable chair. Two days later came all sorts of joint pain, headache that would come and go, and weird hot and cold sensitivities. After several days of this I went to doctor and they started doing tests, and my white and red blood cell counts were crazy bad. After little help from them, and constant night sweats that caused me to change pillows and sheets, I ended up in hospital totally dehydrated and they treated me with IV's and antibiotic for a tick borne illness even though no test results showed positive for the disease. I was totally better within 4 or 5 days. Their tests are only partially successful in identifying some tick diseases. Originally i had thought it was just PN when the shocks came on, but it was only the tip of the iceberg on that illness. So you should perhaps consider where you have been and whether it could be just a dormant disease coming back to settle in for a visit. May be a long shot, just thought I would pass it along since it came on and progressed so suddenly for you. Good luck on finding an answer, hope it isn't PN.

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mdemo | @mdemo | Mar 22, 2019
In reply to @judypall "My pain is everyday. Only time I have relief is when sleeping. I wake up almost..." + (show)
@judypall

My pain is everyday. Only time I have relief is when sleeping. I wake up almost feeling normal but once I’m up the stinging tingling pain starts. I have had all the tests. They came up idiopathic neuropathy. No cause no cure. I want to find the cause

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im in same boat. Came back from neuro yest, they basically ran every test u can and ntg coming back. Only thing that did stand out my mercury was high. I know metals etc can cause toxic to nerves. It was at 15 , i did chelation and now at 4. I dont see any improvement.

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mdemo | @mdemo | Mar 22, 2019

I can relate. My small fiber started in right foot, before i knew it was on other foot , up the calfs then felt in hands in forearms. Sometimes i feel burning in back of shoulder blade. Most of the time the discomfort is in my legs. Sitting at work irritates the condition. My hamstrings get super tight and pain and my calfs hurt. Burning in my feet seems endless at times. I dont have any loss of strength etc Thank God. Its more sensory pain related. I was having a real good stretch for 6 months and felt good. Pain was around a 2/3 at most. Recently i had a flare up and went back to 5/6 level. This happens, stress is no good for this condition. I notice when i dont get sleep or am stressed its at its worse. I was confirmed with the skin biopsy. Im in the idopathic group. Just went back to neuro and going back on the lyrica. Hope this can help so i can just have 2-3 hours a day without thinking about this or feeling some sort of discomfort.
Good Luck

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Dec 13, 2019
In reply to @teetee7 "Thank you @elained . I apologize for missing your reply. I've been having a very rough..." + (show)
@teetee7

Thank you @elained . I apologize for missing your reply.

I've been having a very rough 3 weeks with my Autonomic Dysfunction, severe SFN, chronic pain and as you know (unfortunately) the list just goes on and on.

The Weather - has really riled things up - first time I have noticed the weather affecting my Autonomic Dysfunction. It definitely plays a huge role.

My Thermoregulatory System - is VERY out of whack. I have been having terrible bouts of sweating now 24/7. I have been trying to get in to see my Neurologist, but I have felt too sick.

My Neurologist started me on Midodrine and Fludocortizone for my Orthostatic Hypotension and it does help, but I still get syncope episodes every day. I haven't fallen recently, thank goodness, but have come very close. It scares me because I have 4 compression fractures (T5, T6, T7, T8) which all have over 50% loss of height and my discs in-between are all dehydrated. (My Neurosurgeon will not operate on them due to how high risk the surgery is and the success rate isn't good at all).

My skin - on both hands have red blotches on all my fingers and on the top of both. I have a lot of numbness, tingling, nerve pain in them. Both arms have nerve pain but lately it's been mostly deep muscle and joint pain.

My bladder is having more spasms and tenderness. I am nauseous a lot. I literally could lay here and type for an hour on all that's going on, lol. It's crazy!

I have decided to go ahead with getting my first Ketamine infusion. It has been recommended for a while by my pain management doctor and my Neurologist gave me the go-ahead on trying these infusions. I have been using Ketamine nasal spray for 2 years now (it has to be compounded at an apothecary) and it does help to take the edge off migraines sometimes and nerve pain. It's been hard to find people who have undergone Ketamine infusions for chronic pain.

If anyone has any experience or knowledge with Ketamine infusions, I would love to hear about their outcomes with them. When I was undergoing the plethora of Autonomic tests at the Mayo last year, the doctors here were very enthusiastic about Ketamine infusions.

Best wishes to you and everyone. It's one day at a time and one step at a time.

TeeTee

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Hi, @teetee7 - how are things going lately with the small fiber neuropathy?

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iceblue | @iceblue | Dec 13, 2019
In reply to @mdemo "I can relate. My small fiber started in right foot, before i knew it was on..." + (show)
@mdemo

I can relate. My small fiber started in right foot, before i knew it was on other foot , up the calfs then felt in hands in forearms. Sometimes i feel burning in back of shoulder blade. Most of the time the discomfort is in my legs. Sitting at work irritates the condition. My hamstrings get super tight and pain and my calfs hurt. Burning in my feet seems endless at times. I dont have any loss of strength etc Thank God. Its more sensory pain related. I was having a real good stretch for 6 months and felt good. Pain was around a 2/3 at most. Recently i had a flare up and went back to 5/6 level. This happens, stress is no good for this condition. I notice when i dont get sleep or am stressed its at its worse. I was confirmed with the skin biopsy. Im in the idopathic group. Just went back to neuro and going back on the lyrica. Hope this can help so i can just have 2-3 hours a day without thinking about this or feeling some sort of discomfort.
Good Luck

Jump to this post

@mdemo - you have raised an issue that perplexes me, and that is the inconsistent nature of the symptoms. Minimal pain one day, raging the next. Today burning, tomorrow pins/needles.

And the more I read about this condition, the more I wonder how long I've actually had it - and whether it has and is impacting my autonomic nervous system. I've experienced 'periods' of time when my heart rate was going crazy (confirmed by my doctor), often for no apparent reason. I had to stop taking hot showers because they sent my heartrate through the roof. That eventually stopped and I can now take hot showers. More recently I had intermittent breathing difficulties. It's like my body went through periods where it 'forgot' to breath and I would have to breath very consciously. That also seems to have subsided (this was not anxiety related - although it was freaky). I also went through a period of time where my mouth was incredibly dry. So dry that my dentist suggested I be tested for Sjogren's Syndrome. I had the lip biopsy - and thankfully it was negative - although doctors had no explanation of why my mouth was so dry. Eventually, the dryness resolved - thank goodness!

Sometimes it feels like a rollercoaster.....

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Dec 13, 2019
In reply to @iceblue "@mdemo - you have raised an issue that perplexes me, and that is the inconsistent nature..." + (show)
@iceblue

@mdemo - you have raised an issue that perplexes me, and that is the inconsistent nature of the symptoms. Minimal pain one day, raging the next. Today burning, tomorrow pins/needles.

And the more I read about this condition, the more I wonder how long I've actually had it - and whether it has and is impacting my autonomic nervous system. I've experienced 'periods' of time when my heart rate was going crazy (confirmed by my doctor), often for no apparent reason. I had to stop taking hot showers because they sent my heartrate through the roof. That eventually stopped and I can now take hot showers. More recently I had intermittent breathing difficulties. It's like my body went through periods where it 'forgot' to breath and I would have to breath very consciously. That also seems to have subsided (this was not anxiety related - although it was freaky). I also went through a period of time where my mouth was incredibly dry. So dry that my dentist suggested I be tested for Sjogren's Syndrome. I had the lip biopsy - and thankfully it was negative - although doctors had no explanation of why my mouth was so dry. Eventually, the dryness resolved - thank goodness!

Sometimes it feels like a rollercoaster.....

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I'm with ya on that ride.

REPLY
mdemo | @mdemo | Dec 21, 2019
In reply to @iceblue "@mdemo - you have raised an issue that perplexes me, and that is the inconsistent nature..." + (show)
@iceblue

@mdemo - you have raised an issue that perplexes me, and that is the inconsistent nature of the symptoms. Minimal pain one day, raging the next. Today burning, tomorrow pins/needles.

And the more I read about this condition, the more I wonder how long I've actually had it - and whether it has and is impacting my autonomic nervous system. I've experienced 'periods' of time when my heart rate was going crazy (confirmed by my doctor), often for no apparent reason. I had to stop taking hot showers because they sent my heartrate through the roof. That eventually stopped and I can now take hot showers. More recently I had intermittent breathing difficulties. It's like my body went through periods where it 'forgot' to breath and I would have to breath very consciously. That also seems to have subsided (this was not anxiety related - although it was freaky). I also went through a period of time where my mouth was incredibly dry. So dry that my dentist suggested I be tested for Sjogren's Syndrome. I had the lip biopsy - and thankfully it was negative - although doctors had no explanation of why my mouth was so dry. Eventually, the dryness resolved - thank goodness!

Sometimes it feels like a rollercoaster.....

Jump to this post

I tried to make sense of the whole thing and its very unpredictable. I must say i have found a happy balance now and if it stays like this I'm ok with it. Im on a a daily regimant of various vitamins to help with this and 100mg lyrica2x day. The dr says thats considered a rather lower dose and I'm not really having any adverse affects. There are some stretches where i think its gone forever but then comes back at different times. I do the peloton bike like 3-4 times a week which helps with my legs and etc. If i over do it it definitely acts up the next day or so. Luckily , i don't have any of the autonomic issues, nor temperature sensing, Its just pain and or discomfort in feet and legs. Not sure what age most are , I'm a 45 male so not sure if thats considered young for this condition. I just hope it stays like this and doesn't blow into something more substantial. My dr says every case is different and since i haven't got any worse, maybe a tad better since started, it will prob stabilize and or have a very slow progession

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