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Acute small fiber neuropathy

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Old 02-12-2016, 03:08 PM   #1
mickeyM
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Default Acute small fiber neuropathy

Hi- I'm new to this forum. In early december I had pneumonia for 2 weeks. 2 days after finishing antibiotics I developed hand and arm numbness which last til the end of december. I also had a jello feeling in my muscles. felt weak but weren't. Then that went away and for the past five weeks Ive had burning in my feet when i wear shoes and cold/wet feelings randomly on my arms and legs. like drops of water. I was 100% healthy before this (im in my early 40's) now i'm a wreck... most b/c im nervous and my sleep has been severely impacted. i had a brain mri, cspine mri, every blood test for autoimmune diseases, GBS, celiac dz etc. EMG was normal as was the 5 neuro exams ive had.i went to the best place in manhattan. they said it was a acute small fiber neuropathy.

they stated me on gabapentin at night. helps me sleep a little better and helps with symptoms til around noon the next day. they said be patient it should get better. give it time etc. they didnt want to give steroids or IVIG etc.

im losing my mind. i dont know how i can go on like this. i have a family, job, 3 kids... all of which are being affected by the fact i cant get this out of my head. i have good and bad days. anyone go through this before? will it get better with time like they say? i feel like my body is alien to me.
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Old 02-12-2016, 08:05 PM   #2
madisongrrl
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Hi Mickey,

I'm so sorry you are going through this. You are not alone. There are many people on this forum that have had full body sensory symptoms that came on quickly. If you look for posts under my name, you will find that my symptoms were caused by Lyme. Many forums members don't know the cause of their symptoms.

One good thing to do is to read up on the supplement that are talked about on this forum. You have to put the nutrition in place that will allow your body to heal over time.

Good Luck.
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Old 02-12-2016, 11:15 PM   #3
SU30boy
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Hi, MickeyM
What were the antibiotics you had for your pneumonia, Cipro? Levaquin? Avelox? They belong to a class of antibiotic called the fluroquinolones and have been known to cause neuropathy. Just asking. Cheers!
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Old 02-12-2016, 11:34 PM   #4
heb1212
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Quote:
Originally Posted by mickeyM View Post
Hi- I'm new to this forum. In early december I had pneumonia for 2 weeks. 2 days after finishing antibiotics I developed hand and arm numbness which last til the end of december. I also had a jello feeling in my muscles. felt weak but weren't. Then that went away and for the past five weeks Ive had burning in my feet when i wear shoes and cold/wet feelings randomly on my arms and legs. like drops of water. I was 100% healthy before this (im in my early 40's) now i'm a wreck... most b/c im nervous and my sleep has been severely impacted. i had a brain mri, cspine mri, every blood test for autoimmune diseases, GBS, celiac dz etc. EMG was normal as was the 5 neuro exams ive had.i went to the best place in manhattan. they said it was a acute small fiber neuropathy.

they stated me on gabapentin at night. helps me sleep a little better and helps with symptoms til around noon the next day. they said be patient it should get better. give it time etc. they didnt want to give steroids or IVIG etc.

im losing my mind. i dont know how i can go on like this. i have a family, job, 3 kids... all of which are being affected by the fact i cant get this out of my head. i have good and bad days. anyone go through this before? will it get better with time like they say? i feel like my body is alien to me.
Mickey... I'm so sorry. I empathize with both your painful symptoms and your panic and have described it as if my body was invaded. I think the emotion and panic was ALMOST as bad as the pain. I too had an acute onset of body-wide nerve pain after a virus. I didn't take antibiotics though. It's been suggested that my condition is "immune mediated" or post-viral, something that Glennj has discussed in great detail in this site. It's been a difficult long road for me, but I've dug deep to care for my family and maintain my job. I guess if I can offer anything to you, it would be that it can be done. I hope that with time your body will heal.
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Old 02-12-2016, 11:45 PM   #5
Marie33
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[QUOTE=madisongrrl;1198903]Hi Mickey,

I'm so sorry you are going through this. You are not alone. There are many people on this forum that have had full body sensory symptoms that came on quickly. If you look for posts under my name, you will find that my symptoms were caused by Lyme. Many forums members don't know the cause of their symptoms.

One good thing to do is to read up on the supplement that are talked about on this forum. You have to put the nutrition in place that will allow your body to heal over time.

Hi madisongrrl & Mickey...
How are you? I'm sorry you are going thru this kind of pain & suffering. I also have SFN going on to 5 years now. Madisongrl you use the word heal. Is your sfn better? Do you feel like you have healed? I take 300 mgs Lyrica for pain. All other meds did not work. I tried and still taking some of the supplements mentioned in this forum, mostly by Mrs D. (I still take 1000mcg B12, B1, Biotin, Mag, VitD3). I have had no treatments either ex: IVIG, Prednesone, etc. Thus far I show no signs of healing. I see you take "low does Naltrexone", does/did this help you with your pain. Should I ask my Neuro about this medication? Maybe it can help Mickey with his symptoms? Have you ever tried taking Prednesone and has it helped you? My sfn is still "Idiopathic" even tho the latest blood-work, after 5 years is leaning towards some autoimmune deficiency/disorder or disease. I don't know anymore. I'm also scared and confused about my future. This "disease" has taken over my life. Is there anything you can offer to help "us".. Ty
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Old 02-13-2016, 08:44 AM   #6
en bloc
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It is no surprise that your symptoms started after a course of antibiotics. There are a few antibiotics that are KNOWN to cause small fiber neuropathy...Cipro and those in that class (Fluoroquinolone) are at the top of the list. They actually have a black box warning for neuropathy.

Of course there are many causes of SFN, but being the timing of your symptoms with the antibiotic, it's likely from it. What antibiotic were you taking?
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Old 02-14-2016, 09:46 AM   #7
mickeyM
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levaquin. im aware of the association with PN. my doc thought it was more likely immune mediated related to my infection rather than the antibiotic but he said i'll never know. two months ago i was 100% healthy. now im a friggn emotional wreck. which is a bad thing b/c anxiety and poor sleep seem to make things worse. sometimes i have a good attitude but other times i dont. ive really withdrawn. this is like a cruel joke. my symptoms started as one thing the first month then totally changed the second. numbness and tingling went away then had foot burning, wet drops on my extrems and fasiculations (probably from anxiety and sleeplessness). i think i need to try and ignore everything, paying attention makes it worse.

i keep thinking i didnt realize how good i had it before this. unhealthy thought i know but cant help it.
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Old 02-14-2016, 11:43 AM   #8
teachermom
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Originally Posted by mickeyM View Post
levaquin. im aware of the association with PN. my doc thought it was more likely immune mediated related to my infection rather than the antibiotic but he said i'll never know. two months ago i was 100% healthy. now im a friggn emotional wreck. which is a bad thing b/c anxiety and poor sleep seem to make things worse. sometimes i have a good attitude but other times i dont. ive really withdrawn. this is like a cruel joke. my symptoms started as one thing the first month then totally changed the second. numbness and tingling went away then had foot burning, wet drops on my extrems and fasiculations (probably from anxiety and sleeplessness). i think i need to try and ignore everything, paying attention makes it worse.

i keep thinking i didnt realize how good i had it before this. unhealthy thought i know but cant help it.
I remember when I first had symptoms and like you I was so depressed. My mental image of myself had always been a healthy person. Then, all of the sudden just standing up took an effort. I remember one day last December when I tried to take a pan of fish from the oven and nearly dropped it because of the weight. I had to decide each day what I wanted to achieve because I knew it was a one shot and I'm done kind of thing. I also remember very vividly making plans for how to deal with life, thinking about hiring help around the house, wondering if I would need disability. Fortunately, those thoughts are long gone. My body has adjusted. I have adjusted. I think a lot of the battle with this is just accepting that we have a new normal and building on our strengths.

I still have days that I feel like I'm dragging around tree trunks--and yes, I get down and wonder if I will need a walker before long and wonder why me. But I also have some days that I just don't notice it so bad. And that's a pretty good day.

One more note. I know you have read a lot about b12, but even if your levels are normal--mine were, get a supplement. I have been supplementing for about a month. I can tell a difference.
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Old 02-14-2016, 06:21 PM   #9
pinkynose
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Default My symptoms came on suddenly as well

and changed over the 1st few months. Not the same exact order as yours, but I don't think that really makes much difference. At this point they are mild enough to not wreck me most of the time.

I totally relate to the sleep issues and I want to share what I have done that has helped.

Fasciculations: magnesium & calcium in the form of a pill and also a magnesium lotion has benefited me greatly. I also think D3 is quite important. I have been able to literally stop fasciculations by using my 10's machine. I don't mean forever, but for that night so I can sleep. Sometimes they may come back very mildly in the early morning but a little magnesium lotion usually takes care of it and I can go back to sleep.

Burning: I believe Benfotiamine and fish oil have lessened the burn.
Taking gabapentin might be helping also, especially with sleep. I took that for some time and am now weaning off. In the beginning until I got this all under some control I also gave in to a sleeping pill when I had something important the next day or was an emotional wreck from lack of sleep.

If you want any specific info just PM me. Hang in there.

Quote:
Originally Posted by mickeyM View Post
levaquin. im aware of the association with PN. my doc thought it was more likely immune mediated related to my infection rather than the antibiotic but he said i'll never know. two months ago i was 100% healthy. now im a friggn emotional wreck. which is a bad thing b/c anxiety and poor sleep seem to make things worse. sometimes i have a good attitude but other times i dont. ive really withdrawn. this is like a cruel joke. my symptoms started as one thing the first month then totally changed the second. numbness and tingling went away then had foot burning, wet drops on my extrems and fasiculations (probably from anxiety and sleeplessness). i think i need to try and ignore everything, paying attention makes it worse.

i keep thinking i didnt realize how good i had it before this. unhealthy thought i know but cant help it.
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Old 02-14-2016, 07:45 PM   #10
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Originally Posted by heb1212 View Post
Mickey... I'm so sorry. I empathize with both your painful symptoms and your panic and have described it as if my body was invaded. I think the emotion and panic was ALMOST as bad as the pain. I too had an acute onset of body-wide nerve pain after a virus. I didn't take antibiotics though. It's been suggested that my condition is "immune mediated" or post-viral, something that Glennj has discussed in great detail in this site. It's been a difficult long road for me, but I've dug deep to care for my family and maintain my job. I guess if I can offer anything to you, it would be that it can be done. I hope that with time your body will heal.
It's so strange ... I had sudden onset after taking a flu shot in October ... by end of November my feet and ankles were totally numb and stiff. I did have very mild tingling and numbness in feet, but perhaps the flu vaccine accelerated the condition? Feet up to the knees are stiff, painful and I feel tightness and burning all over my body when at rest. Bedtime and waking up are the worst - scary symptoms! And, walking is very difficult. I was perfectly fit a few months ago - even went hiking in the South of France! But now, painful knees started last week ... I am hopeful I'll get control of this disease at some point or at least stop the progression. It seems from what I've read from Senior members is that the initial flare up is the worst and then symptoms subside? True? Or ... maybe we just get used to dealing with daily pain and disability.
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