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.

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.

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!

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.

[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

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?

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.

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.

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.

I've been getting better every day. My burning has greatly reduced in all areas of my body.

LDN has seemed to helped with the pain, along with the antibiotics. I take 2.5mg of LDN each night before bed. This might be a good drug for you to try, especially if there is a suspected immune/autoimmune component to your SFN.

I've never taken steroids; they are contraindicated with Lyme disease.

[QUOTE=madisongrrl;1199257]I've been getting better every day. My burning has greatly reduced in all areas of my body.


LDN has seemed to helped with the pain, along with the antibiotics. I take 2.5mg of LDN each night before bed. This might be a good drug for you to try, especially if there is a suspected immune/autoimmune component to your SFN.


I've never taken steroids; they are contraindicated with Lyme disease.

Madisongrrl, Thank you for responding. I will talk to my Neuro this coming Thurs about the LDN. If I understanding you correctly, Lymes is the cause of your sfn? What did you take that reduced your burning?
And does Nortriptyline help your pain. Do you get any SE's with it. I tried Amitriptyline but it caused skipped heart beats. Plus my BP is normal to low, and Doc said it would probably lower it more. I would love trying it after reading what MrsD wrote, that it could have some "nerve healing" affects.
Could that be why your getting better?

Yes, Lyme disease is the cause of my neuropathy (large and small fiber). LDN and antibiotics reduced the burning. I can wear shoes now without pain. :)

Nortriptyline helps with my facial pain. I have nerve pain that runs from the left side of my throat all they way to my eye. If I cared enough to follow up with my neuro, I would suppose that it would be classified as atypical face pain. Nortriptline does help with that. I've run out of it before and also tried to quit it....but I can't because my face starts hurting to the point where I can't function. I had a reduction in burning withing 2 weeks of starting LDN and antibiotics; so this is really what has made the biggest improvement in the quality of my life.

I dont see the neurologist for another 3 weeks. i have some decent days and some bad. It really is hard to ignore the symptoms. Any tips on that? Im scared to try anything that would affect me during work. Although thinking about my issues 24/7 probably isnt helping. given the sensory nature of this whole thing, any little twinge bothers me now. it may be normal or abnormal but now im aware of every little thing. thats bad. what oral supplements are useful. im taking a bunch but its hard to tell if anything works!

Hi Madisongrrl,
I went to my Doc appt today. Asked the neurologist about Low Dose Naltrexone for my pain and burning. He laughed and said "that stuff doesn't work for your kind of pain". I told him I talked to a few people on this site that use it and have gotten some relief. He said he hardly prescribes it and wouldn't prescribe it for me! I was so mad...I will ask my PM Doc on Monday what he thinks. Wanted to share this with you and others that use this med.
I'm reallly getting tired of this pain and these damn doctors!! :mad:

[QUOTE=Marie33;1199448]
Hi Mgrrl,
I wrote to you in another post too. I just wanted to ask you why you thought LDN might be good for me? Today I found out that my SFN may be autoimmune mediated. Neurologist says my Serology report (bloodtests) showed my Carbonic Anhydrase is elevated. So this means I have an Inflammatory autoimmune disease. ( I have no idea what that means). He gave me Medrol Dosepak (Prednesone) to try for a few days. I asked about LDN for my pain and he said he doesnt use it. What are your thoughts. Should I just ask my Pain Management Doctor on Monday?

Your neurologist is a jerk. Pradeep Chopra is a well known pain managment doctor who has success treating CRPS patients with LDN and gabapentin. I can tell you that on other LDN message boards, it does take the edge off neuropathic pain for some.

Will it revolutionize your life and cure your pain? Probably not. Might it take the edge off your pain and give you more quality of life? Maybe! It cheap and it has such a low side effect profile that it surely can't hurt to try it out for 6 months.

LDN helps your immune system function better - it's one of the ways the drug works. So the fact that they suspect that your neuropathy might have an immune/autoimmune cause, well then it I think it is reasonable to try something that might help your immune system work. Hopefully your pain doctor knows about LDN and will write you a script.

Also, are you supplementing with Vitamin D? Did you have your levels tested?

SBTBAB3 - I can relate
 

Hi Mickey, I can totally relate and feel your pain. I had a virus January 2015 and 2 huge holes formed in the roof of my mouth that were infected and filled with pus. The ear, nose, throat doctor never gave an exact diagnosis of what it was but coxsackie and herpengina were mentioned and biopsy was negative for cancer.

Then February I got first symptoms of "neuropathy". Also, an important factor, I am Type 1 diabetic. I was originally diagnosed Type 2 about 6 years ago and then after losing about 40-50 pounds, doctor ran a C-peptide test and found out I am Type 1 in April 2015 and went on insulin pump and sensor. However, like I said, had some kind of virus in January and the neuropathy started in February and progressed very quickly to SEVERE pain in feet and legs.

Also experience what I describe as electric shock randomly all over my body. Then in May, started having jaw pain on left side when I eat. Now, the doctors I was seeing, primary, neurologist all said "Oh it's just diabetic neuropathy". But I believe it's some other type of neuropathy (like what you and others are describing). Finally just went to a new neurologist and he agrees (Thank God).

I just had a left lumbar sympathetic nerve block yesterday and I feel some relief but not what I had hoped. I have been taking for a while 3600 mg/day of Gabapentin and a pain medicine and just started on Oxstellar 1200 mg/day about 1 week ago. I tried Lyrica, nortryptaline, Fetzima, etc. but either had nasty side effects (Lyrica) or no relief. I think the virus triggered something and somehow it's all related.
What exactly is acute small fiber neuropathy? My new neurologist mentioned something like that but also said it could be an auto-immune neuropathy. I'm in my mid 40's and have a family and I'm looking for any kind of answers cause living like this is horrible and a struggle to make it through each day!!!

Antibodies to your infection attack your own small nerve fibers bc the proteins are similar. Autoimmune thing but hard to prove. Kinda like gbs. Im going to a dedicated pn center. They said should be monophasic and improve with time... Months. The should and months are not very comforting.

During the day i walk around with crocs or no shoes which is ridiculous but what can i do. Night time stuff if it keeps me up is the worst. No cure just symptomatic treatment. They seem to reserve immunotherapy for people with motor neuropathies... Weakness. Very little written about acute small fiber neuropathies. Only small case reports

Did you get better
 

Hi Mickey,

I realize its been a long time since this post, but I'm in the same exact position that you were in. I have been diagnosed with acute small fiber neuropathy. My neurologist says that it will likely resolve over time and he put me on gabepentin. Like you, i'm in my early 40s with kids and a career. It has been 4 months now and I am looking to hear from someone who had a successful recovery. Can you share with me how you made out?