Glenntaj
 

Hey glentaj. Im twomonths into a small fiber neuropathy after pneumonia. Treated same place as u. How long did it take before u got better? Did u ever get steroids.., theres an article talking about dramatic improvement in acute sfn with steroids. My dr is considering them? Unfortunately mental after two months im thinking about antidepressants. Having trouble sleeping also from the constant stress

Every test including physical exam has been negative. Did everything except skin biopsy. My problem is the changes. One day wet feelings for a few weeks then sun burn. How can my ankle feel sunburnt for a few hours then totally normal the rest of the day. I also notice when i succumb to anxiety or dont sleep its worse and areas that did bother me start to. Doctor says give it time but ive gotten so depressed by constantly worrying for three months.

saw an article.. Google steroids small fiber neuropathy

They got mega oral doses of steroids several months after symptoms started.

I keep thinking if i only did xyz.. I wouldnt have gotten pneumonia and this wouldnt have happened. Unhealthy thinking. Im just down in the dumps. I have a great wife, 3 kids, great job. Im scared im gonna mess it all up

Hi Mickey, this is my first post on this board and personally I wish I would've tried to steroids myself when I was afflicted by this disease five months ago.

I may even give it a try soon since my symptoms have gotten worse lately. I don't think you have much to risk trying some high-dose steroids for short period of time. I had acute onset after a traumatic injury last sept. My doctor thinks this may be a mild case of GBS… I'm not too sure...I do think it has an inflammatory aspect to it, and steroid always help inflammatory issues.

Anyway... This road can be a tough one to be on. I really thought I was getting over it at one point… but it came back with a vengeance and now I'm experiencing more pain in other parts of my body. I used to have it a lot in my hands and upper body but now those areas seem to have gotten better but my legs have taken a major turn for the worse. I'm not too sure what happened it's such a confusing disease. I really haven't found any rhyme or reason to when and why the pain comes and when it goes away. But I think you should explore every avenue you can to try to get the best of this...Steroids, IVIG, and supplements if you can find one of them that works.

Keeping hope that we all find a better place and better quality of life.

Sven

Psychologically its as horrible as physical. What r your symptoms? I started with numbness and pins and needles gor three weeks. Went away. Then foot burning which slowly got better but still there. Now i have sunburnt feeling legs. I hope this all plays out. They said nerves regrowing is painful. I hate the cold feeling hot and the allodynia on the sheets. My dr said four to six months up to a year. Reading this board however who knows.

Dude ill pray for u too. This is a rough thing. Maybe we'll get better with time. Bless you. Hang in there. Im trying

Btw you taking any meds. I take neurontin 300mg at night just went down to 200mg. Even at that low dose i feel like a space cadet. I need sleep meds recently bc of the leg discomfort. May go on an antidepressant too. Funny never took anything besides prilosec before this.

I do take it 300 mg of gabapentin each evening… I felt a little sedated and spacey when I first took it… but after a few months I really feel as though it has no effect on me. I have a job that doesn't allow for you to take a sedating type drugs and I will probably try and come off this drug in next month or so.

I must say that a lot of the sunburned feelings on my back and arms has dissipated although recently I have developed severe burning and deep bone pain in my feet which sometimes radiates all the way up to my knees. This has been a big concern for me since I felt like I was getting better.

On the psychological front I will say that it really hit me pretty hard the first two or three months. Had some panic and anxiety and depression but I've come to accept it more recently. I try and use a Zen attitude of acknowledging it and then letting it go. I feel as though it sometimes works and sometimes the pain is to challenging for me to just release it.

Anyway we need to find out different tools on how to live with this disease. I would hope that it goes into remission and/or goes away completely which would be great but until then we have to use coping mechanisms.

Hope you have a better day tomorrow

Just to answer a bit--
 

--no, I was never offered steroids or other immune modulating treatments as there was no direct evidence that inflammation was causing my acute onset body wide neuropathy. All my inflammatory marker testing was quite normal, and I did not test positive for any antibodies (my testing, over months, was very extensive).

On the other hand, we still think that though officially idiopathic, my neuropathy may well have involved a post infectious autoimmune molecular mimicry response, and it may well have involved autoantibodies specific to my physiology that would not have been identifiable by standard tests. (This is thought to be a distinct possibility for many who are otherwise labelled idiopathic.) We say this not only due to the results of the skin biopsy, but due to a mild positive on Cornell/Latov's own ganglioside agglutinin test, which is a very gross measure of nerve antigen antibody activity. These were the only two tests to ever be positive in my case.

My symptoms were severe from the first hours, though I got some relief from gabapentin updosing after a few weeks. The effect of the gabapentin certainly masked symptoms as the months went on. I did start to notice a symptom reduction about 6-8 months in, and began to reduce my gabapentin dosage after about 12 months. I did it really slowly--it took almost a year to get off it completely--I'd been up as high as 2700mg/day (though I am a fairly large specimen) as I did tend to get little symptom upticks each time I reduced the dose. But after two years symptoms were about 90% gone, though even now, almost thirteen years later, I am prone to flares and compressive effects from time to time.

what were your symptoms? I had toe burning and sun burn. They may give me steroids. U think thats a good idea? Not sure about ivig. How did u sleep at night? Did your symptoms change. Things improve on one part and new things appear elsewhere

Oh and did it affect your career?

My symptoms were primarily dysesthetic pain--
 

--body wide; what you describe as sunburn, in all likelihood. I used to say "imagine you've gotten a bad case of sun poisoning and then someone rubbed it with steel wool, all over your body". I also had bouts of tingling, electrical jabs, and the like, and still do from time to time.

For the first ten days or so of this, until I began taking gabapentin, I deteriorated rapidly--couldn't sleep, couldn't eat, couldn't wear much of any clothing, lost weight, etc. I remember that first dose of gabapenting making enough of a difference that I feel asleep from sheer weariness. Ramping up the dosage quickly enough, even with some "loopiness" side effects, did enable me to be functional in a couple more weeks, so I could start researching this mysterious onset. The pain wasn't gone, but I could do things.

I'm fortunate my career in test prep is flexible enough that I can make my own schedule, but yes, I did miss about a month entirely and shunted many students to other people, and then built back up slowly over the next few months. (My students were quite aware something was wrong as I was very public about my experience once I had enough relief to communicate electronically again. My name is still very well known in the neuropathy and medical advocacy communities--google "glenntaj neuropathy"--as I wrote extensively, including here, how my initial visits to local neurologists were next to useless and how so many of them were clueless; it took my own research and advocacy to finally get an appointment with the Cornell Weill Center for Peripheral Neuroapthy about three months into this to finally investigate through targeted testing and skin biopsy the possibility, which I had discovered through my own research, that I had experienced an acute onset small-fiber syndrome--a possibility no one seemed to know about until I got to Cornell.)