[baba222]

Hi,

I now have burning pain to touch all over my body (new things every month or so). It was just lying and sitting and now with pressure to other parts.

So, does anyone else have this?

TIA

[boiler1993]

Hi Baba,
I have similar symptoms but not as intense but def. a form of allodynia. I will have periods of time where my skin (mostly on my stomach, back, trunk and bottoms of feet , sometimes palms) just is irritated by my clothing. Almost like a sunburn being rubbed. Also not sure if this was allodynia or dry skin (maybe you will have some insight) but sometimes when I lay down to go to bed, the side I lay on at every point of pressure contact with the bed will itch/tingle to the point where I have to keep rolling over. Like I said all of the symptoms come and go. May I ask if you have length-dependent or NLD SFN? I was recently diagnosed with NLD-idiopathic SFN. Hope you feel better!

[janieg]

I also have similar symptoms which makes wearing socks uncomfortable, especially at night.

I do have an interesting twist on things that no one else has mentioned to date, and I think my neurologist thinks I'm crazy.

Starting from my mid-torso on down, if I touch the right side of my body, I get a strong sensation in my right foot. And the same goes for the left side. If I move my body in any way from the torso down, I feel it in my feet. For lack of a better term, I call it "referred sensations." Thankfully it's not painful right now, just annoying, but if it ever becomes painful, I'll be in big trouble.

Here's one thing I've also noticed, and it's causing me a lot of problems sleeping at night. I get this buzzing sensation all over my body, but it seems to affect my left side more than my right. It feels like I'm plugged into an electrical socket. If it's really bad, it will wake me up. All I have to do to make it stop, though, is move around. It seems that if I engage my motor nerves, my sensory nerves will calm down...for at least a little bit. Needless to say, moving around all night does not make for a restful sleep.

[Synnove]

janieg,

What you are describing as a buzzing feeling all over especially at night, is exactly the symptoms I have had for 3 years or so. To make it short, I have had all sorts of work up. Diagnosed with SFN and autonomic neuropathy.

These feelings of buzzing or vibrating has been very annoying to me, especially during the time I did not have a diagnosis.

I had my neuropathy neurologist explain it to me, and it took a couple of times having him explain it before I understood and accepted it. In my mind, I was convinced that I had a systemic infection or something, or MS. (I feel these symptoms more when I am exhausted)

That being said, I think if your SFN is being diagnosed as being caused by immune problems, there is a chance it can be treated immuno suppressive meds.

The neurologist said that this symptom is caused by the sensory nerves being affected by small fiber neuropathy. To say it simple, he said" it is the sensory nerves sending the wrong signals (due to SFN) and it is just your presception of it being like a buzzing/vibration. Just ignore it, when it buzz, just say to yourself "wrong number."

Not that the doctor is not treating it, he is by symptom control for now. Lyrica and Amitripthyline which is pretty much the standard of medical symptom control.

I am due for some further diagnostic testing and will hopefully soon understand the underlying problem causing the SFN.

I have other symptoms from SFN such as burning all over, pins and needles and numbness in extremities. Sometimes extreme sensitivity in left arm when I feel like nothing can touch it.
From what I can understand, these symptoms are what is called Allodyna.

These were just some of my thoughts from my understanding of these horrible symptoms.

[mrsD]

I typically get buzzing when I am having GI problems...bloating, cramping etc. I have this HAE which causes my intestines to sometimes swell up...it is a bradykinin excess which passes in a day or two. This I think compresses nerves in the abdomen.

So since it is worse this winter, I decided to do a Candida treatment. NOW brand Candida Support. I have already noticed a big improvement this week on a starter dose of one a day only.
I start slowly since my GI is so sensitive. But I often get buzzing before I have an attack.

[janieg]

Thanks for responses.

To date, nothing has shown up in blood work to indicate my problems are immune system based...no anything else for that matter.

Mrs. D, you comments about your gut really piqued my interest. The beginning of my downturn was when I took iron supplements to deal with low ferritin, and I tore up my digestive tract. I literally felt like I had gasoline burning its way through my intestines. I obviously stopped taking them immediately, and did the only thing I could think of to do to try to get things squared away...I started taking a probiotic (Jarrow brand) and a PPI. (I had a bad bout of gastritis a couple years early.)

One of the side symptoms I developed during this is what I can best describe as a "prickly" feeling all over. Once things started calming down digestively, the prickly feeling went away. I eventually stopped the PPIs, but the prickly feeling came back. I started back up on them again assuming it was related, but they never went away. It was about a month after that I got the full blown SFN and "the pricklies" have been a feature ever since.

I know when my digestive tract is irritated, my symptoms get worse, sometimes much worse. I just assumed the SFN magnifies all discomfort.

I think I'll add the Now Candida to my list of things to try.

Have you by any chance done the Ubiome test or something like it?

[Healthgirl]

Originally Posted by janieg

I also have similar symptoms which makes wearing socks uncomfortable, especially at night.



Here's one thing I've also noticed, and it's causing me a lot of problems sleeping at night. I get this buzzing sensation all over my body, but it seems to affect my left side more than my right. It feels like I'm plugged into an electrical socket. If it's really bad, it will wake me up. All I have to do to make it stop, though, is move around. It seems that if I engage my motor nerves, my sensory nerves will calm down...for at least a little bit. Needless to say, moving around all night does not make for a restful sleep.

I also have this. It seems to hit me out of no where when I am in a very relaxed state. It sometimes wakes me up. It is the worst when it jolts me awake just as soon as I doze off. That is hellish! Its very disconcerting.

[janieg]

Originally Posted by Healthgirl

I also have this. It seems to hit me out of no where when I am in a very relaxed state. It sometimes wakes me up. It is the worst when it jolts me awake just as soon as I doze off. That is hellish! Its very disconcerting.

Thank you for sharing. Although I don't like knowing others are suffering from this craziness, it's at least a little comforting to know that I'M not crazy, and these sensations are real.

[baba222]

Originally Posted by boiler1993

Hi Baba,
I have similar symptoms but not as intense but def. a form of allodynia. I will have periods of time where my skin (mostly on my stomach, back, trunk and bottoms of feet , sometimes palms) just is irritated by my clothing. Almost like a sunburn being rubbed. Also not sure if this was allodynia or dry skin (maybe you will have some insight) but sometimes when I lay down to go to bed, the side I lay on at every point of pressure contact with the bed will itch/tingle to the point where I have to keep rolling over. Like I said all of the symptoms come and go. May I ask if you have length-dependent or NLD SFN? I was recently diagnosed with NLD-idiopathic SFN. Hope you feel better!

I thought I had LD since it all started in hands and feet. But now it is all over. Here's to hoping we ALL feel better soon. Yes, the sunburn being rubbed is allodynia.

[Electron]

If you want to learn more about how to make your own fermented foods, including kefir, the subject covered very thoroughly in this book:

http://www.amazon.com/dp/1931498237
Wild Fermentation: The Flavor, Nutrition, and Craft of Live-Culture Foods
by Sandor Ellix Katz

I keep saying I'm going to make almond or soy milk yogurt one of these days, but have never gotten around to it. I do brew beer but the type I make is not supposed to contain any bacteria, but only one species of yeast, which provides lots of B vitamins, but I don't believe it's particularly good for the gut.
Ron