It's odd.......my non-length dependent sfn doesn't seem to get any worse at bedtime, it is the same all day (awful!)

I am able to fall asleep and it must not occur during sleep, I am a light sleeper and I'm sure it would be waking me up if it were occurring during sleep.

Anyone else care to share about this.......

Well, it's rare for mine to get worse at night or to be consistently uncomfortable during the day. If it should act up more, resting helps OR walking and being otherwise active makes it feel better. Go figure.

I don't have trouble sleeping, either. And it feels best first thing in the morning after I wake up. Once in a while, it actually feels as it it's gone, but only for a short time.

Sheltiemom

Wow Sheltiemom - I think I met my match. You described me perfectly. I woke up this morning and for about an hour I thought, wow I'm cured......nope back it came little by little.......

Yes resting and excercise does help too, maybe because I am distracted, not sure.

Not too many of us non-length dependents around, I prickle from the top of my head to the tip of my toes and everywhere in between. No numbness though. Sometimes some buzzing on bottom of feet adds to the fun and lets not forget the wormey electrical crawleys....in case life gets a little boring!

Sorry to make you repeat, but I am new here.....

Is yours idiopathic?

I have had this since May '09, came on overnight........started with a few a day, next day more, etc., etc.,etc.......now around the clock every 1-2 seconds, no 2 spots at the same time.......wierd!

Any muscle twitching?
(I have quite a bit, makes me worry that it is going into my motor nerves, but no weakness.)
That is my biggest fear, don't get me wrong the sensory symptoms are awful, but motor weakness really scares me.

I'm thinking about ordering some Benfotiamine - it sounds convincing......

I was a nervous person before all this started, now I am ready to fly the coop!!!

At least as it looks from here.....

Invisable and Amit -

Our kind of neuropathy is considered the more "rare" type according to the neuro who did my skin biopsies. However, other members here at NeuroTalk also have the non-length dependent type and know a lot about it (glenntaj for one). Had about half of the EMG testing, and nothing abnormal showed for length-dependent.

So far, mine has not been called idiopathic. Was diagnosed by rheumatology and my PCP clinically with the autoimmune primary Sjogren's Syndrome a month or two after the overnight burning started.

So I guess based upon everything combined I have that are so typical of it, a reasonable Dx would be Sjogren's although the labs for it were all normal. Sometimes it takes years for them to go abnormal. It's not curable.

You describe all the weird sensations so well, Invisable. Sometimes I have them in multiple places, other times not at any. Just curious: I also have itching, do you? Seeing the rheumy on 10/18, and will ask about it as that can also be Sjogren's - so just wondering.

Well, lately in the scalp area, I could almost describe it as itching/prickling. Between that and the constant pin pricks shooting all over body every minute, and electric worms, I really am worried, if this continues to increase, I am going to need a straight jacket!

I have read that Sjogren's can involve itching due to dryness of skin. Eye dryness, mouth dryness are also common. I don't have these symptoms.

Sometimes I worry about MS, but spinal tap was ok. Hope that is definitive.

I saw the PA today at neuro's office. He was horrible. Treated me as though I was unreasonable to pursue a reason for all these sensations. I would like to see him prickling around the clock with no answers. I demanded a skin biopsy, he ok'd it with neuro, but insisted it was not useful. I realize the treatment is the same, but I would like to know if I definitely have SFN, can't understand why this matters to him. On the way out I informed the secretary that I will no longer accept an appointment with PA, Neuro or nothing. The last thing I need right now is a condescending PA!

He increased my Gabapentin to 400mg/3x a day, because of my increased sensations. Great, more weight gain and water retention!

Sorry for all the venting.......as you can see I am very physically and emotionally distressed tonight!

I really understand you. I know the situation. My first neuro. one of the best here said to me the first time I saw him that I'm in a panic and that's why I have all these sansatins. 3.5 years late - after the skin biopsy - I was DX with SFN.
The sansation are the same more or less for the last 5 years.

Try to learn to live with them - since they are going to stay for a while...

(I sent you a PM...)