I am pretty much at my wits end, I am numb from head to toe, which literally happened over a few months, the cause is idiopathic small fiber neuropathy, if you were me what would be your daily routine? Thank you, Jan

Hi Jan,
I am not sure what the diet supplements part of your posting means. I also have sfn that is idiopathic. My daily routine is waking up and going to work at 7AM. I get done at 3PM. I go home and depending how I feel I might do a few things around the house. Other days I get a shower and lay down. That is most days. Is that what you were looking for. What we do with our days?

I thought we had discussed supplements for you?

What have you done so far?

Did you try steroids(short course) in case your reaction is really the vaccine injury? What drugs are you taking now?

Did you get B12 and Vit D tested? Did you show conduction problems in testing?

I've totally lost track of what is happening with you.
I thought you were going to get IVIG?

Ok sorry I guess that question was a little vague, to make a long story short yes I have tried almost every suggestion on here over the past few months and I am frustrated because my symptoms are worse, over the holidays I just ate what I wanted because I figured nothing was helping anyway, not a great attitude but the truth none the less. MrsD the Doc out at UCLA ran so many tests ncv and emg all normal all blood tests normal vit B and D were great! No autoimmune problems came to light, so we are thinking vaccine or viral induced which seems to make sense, my SFN test was positive, the only thing that has come back positive, again my Neuro at University hospital says IVIG or steroids are the big guns and why would she have me start either one of those if she feels this will eventually resolve and she really does feel this will happen, all she wants to do right now is treat symptoms with cymbalta and see me in 3 months to see where we are at, she told me that she has seen others with my symptoms and test results and that all have resolved over 1 to 2 years with only symptomatic treatment. So I just keep coming back here to get reassurance and help, I keep thinking maybe someone will give me that right formula to get on the road to healing more quickly, maybe that's not going to happen but I won't give up, in the meantime I just think so much of all of you here, thank you for your help thank you for being patient with me, I will post more often so you all don't lose track of me. Keep sending messages my way even if you have to repeat yourself, I know this get tiring but I still appreciate it so much, I do value your time maybe I'm just missing something sometimes in your posts, I do try to go back and look at what everyone has told me I just feel a little weary sometimes. And hopeful I think you and I are in the same boat I was just wondering do you exercise and what sort of exercise do you do, also what supplements do you take and what foods do you avoid, just what helps you? Thanks to all, Jan

Hi Jan, Funny yu should ask about the exercise. I just started back on my exercise bike last week. Only did it twice but then I went into a flare up. I don't think it had anything to do with the bike. I have a recumbent bike and to be honest I seemed to be ok after using it. Of course I always have severe burning of my feet but I didn't feel any worse. As soon as this flare is over I am going back to it. I don't take any supplements. Just today I ordered R-Lipoic Acid (stabilized) and grapeseed extract. I'm going to give the R-Lipoic a try first and then add in the grapeseed extract. I try to avoid dairy, I eat cheese every now and then. It seemed to be bothering my stomach. Tomatoes also both me so I use them only every so often. It is not too hard when everyone else eats pasta I have pesto with mine. My accunpuncturist told me to stay away from peppers. Basically, what I try to do is if I have really bad symptoms all of a sudden I try to figure out what I ate recently. I also figured out I can't eat pistachio nuts. I hope this helps.

Hopeful,

How do you think you acquired your SFN? Have the neurologists you have seen given you hope for recovery? What medications do you take. I don't ever have flares mine just stays continually bad all of the time, and even seems to get worse over time. Thanks, Jan

Jan,
Mine is idiopathic so they do not know how it started. Could be any number of reasons but I may never know. I think I have accepted this. I would like to know but more importantly I want my pain to be managed. I've been through (I think) every test out there. I currently take Cymbalta 90mg , Synthroid and Tramadol as needed. As Mrs. D. said though cymbalta and tramadol are contraindicated so be careful if you ask for them. Talk to your doctor. I spoke with both of my doctors and my pharmacist. They said the doses where low enough not to worry.
As for recovery, so far I have been told probably not. I still hold out hope. I believe anything is possible. I just put my trust in Jesus.

Me too hopeful, There is nothing impossible with God, I love and trust the Lord Jesus so I will hang on to his promises. You know my Neurologist is out of UCLA here in Los Angles, she says, and I have no reason to doubt her, that she has seen many patients with my symptoms and test results who have resolved over a period of one to two years, all were idiopathic just like us, so hang in there, keep praying , and never give up, I believe with all of my heart we are going to get better! Hope to talk with you one day by phone, it's always great to talk to another person who is going through what you yourself are going through and also to talk to a sister in Christ.Blessings, Jan