Small fiber neuropathy and allodynia...
 

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

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 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.

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.

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.

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?

No I haven't tried that test.

But I do think most of us are infected with high titres of Candida..
Anyone receiving antibiotics would have it.

I started at age 4 with chronic tonsilitis...then my younger brother brought home many germs, and I was given tetracycline.
Then my job put me in harm's way daily and I would get bronchitis. I've had pneumonia once, from my shingles....urinary tract infections when I was younger.

This is why I use Kefir now, and I think I just have Candida severely. The NOW Candida support smells like pencils..so I have a difficulty getting them down..but they do seem to be lifting some of my problems even at this early stage. I bought mine on Amazon.

Since there is a lot of talk about candida in this thread, here are a couple of shows I heard recently about this subject.

Ep #333 – Kit Campbell (In Studio!) – Is Cancer Really Candida? Unique Tips For Radically Improving Digestion & Beating Candida – 10-23-2014
http://www.extremehealthradio.com/333

EP# 343 – Dr. Jeff McCombs – How To Prevent Candida From Turning Into Yeast Infections & How To Restore Balance To Your Body ! – 11-17-2014
http://www.extremehealthradio.com/343

Ron

I'm reading about a strong association between iron supplements and candida infections. Interesting.

I actually have Kefir grains in the freezer. I had been drinking it everyday, but gave it up when I started watching my sugar intake.

Oh, and I haven't taken antibiotics in quite awhile, but also took them a lot as a child for tonsillitis and later for horribly recurring urinary tract infections. (I'm a non-secretor and apparently prone to them.)

So, can kefir actually help with the allodynia?

Kefir will replace organisms that we need in our GI tract.

Lifeway here in US has 12 strains...more than yogurt does.

But many bacteria are killed by antibiotic use, and not available in probiotics. Probiotics only have some.

The newest research involves the microbiotome of our GI tracts being the starting point for illness. The PD forum is already posting alot about this. In fact there are new companies making fecal transplants...capsules from volunteers who have the bacteria that have been destroyed by antibiotics or whatever.

This is a recent thread...about thiamine etc but does mention the fecal transplants too.
http://neurotalk.psychcentral.com/thread215273.html

In doing a little more looking at gene reports, I've just realized that my FUT2 status (non-secretor) has a negative impact on gut flora.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3098274/

"The secretor status determined by the FUT2 gene was strongly associated with the bifidobacterial diversity and composition. The non-secretor individuals only had about half of the bifidobacterial diversity and richness present in the secretor individuals based on the PCR-DGGE analysis. In addition, the non-secretor individuals had significantly reduced bifidobacterial abundance in comparison with the secretor individuals as measured by qPCR. Moreover, the non-secretor individuals lacked, or were rarely colonised by, several bifidobacterial DGGE genotypes, which were related to species B. adolescentis, P. catenulatum/pseudocatenulatum and B. bifidum, and were common in the secretor individuals."

English explanation and some suggestions...

http://bodyecology.com/articles/can-...t#.VMmqfWh4rYg

Many are convinced, and I think it's probably true, that bacteria in the gut (GI tract) are very important to health. I'm hearing there are normally something like 500-1000 species there. Antibiotics due horrible damage to them, of course. And who has never taken an antibiotic? The population of the gut with these great bacteria begins with what the infant gets from his/her mother during the process of birth, then we give them an antibiotic for the first ear or sinus infection (which would go away untreated) and wipe them all out. The gut has an enormous number of nerve endings and some believe that the food we eat, combined with the bacteria, communicates with these nerve endings and affects our health. The gut is responsible for most of our immune system, something like 2/3, don't quote me, and produces many of the neurotransmitters. But these bacteria are not patentable and are not making the drug companies any money, so why worry about them, right?
Ron

I can tell you one thing, this thread has really given me a lot to chew on.

With all the gut discussion and knowing that fermented foods are supposed to be really good for it, I had some sauerkraut tonight. Now I know it has always had some unpleasant gastric effects on me, but what I am also experiencing tonight is a horrid case of the "pricklies" and seriously increased SFN discomfort. I have never made that correlation before, but it's blatantly obvious right now. I was having a pretty good day symptom-wise until I did that.

:eek:

I have never been able to tolerate sauerkraut .. Or cabbage
In general. The kefir is much better and more gentle
If you do a little at a time to start with.

Most stores have Lifeway now , plain and fruit flavored.
It is suggested to use kefir or a good probiotic spaced around
The Candida Support. I am not having any side effects with
Only one a day so far and have obvious gains in just over
A week. So I am pleased so far. Starting slowly may be
Best for people who have a high load of longtime Candida.
Fermented foods have high histamine
Content and this may cause that reaction for you.
There is a histamine thread in the subforum above. ;)

me too.
 

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.

I will be going out to get Lifeway tomorrow. I'm still trying to watch my sugar/carbs, but I'll give up another dairy product to make room for it.

Cabbage may very well be a no-no for me as well. I had a really bad day last Saturday and couldn't figure out why. I had coleslaw at a friend's house, so maybe it set me off.

The Now Candida Support is on its way from Amazon, so I'll have it soon and will do some reading before then. Do you take a probiotic as well as the Kefir?

I'll read the histamine thread as well. I was wondering if that was the cause of my alcohol intolerance and actually bought some Histame at one point, but I noticed no improvement with that problem. Maybe I'll eventually find a use for it.

Thanks for all the great information!

We have always had yogurt here. So no I don't do probiotics (yet)... but the Kefir is just as good I think. I've been using that for 2 yrs now.

When they get more organisms into the probiotics, I might consider them.

Stagger your Kefir with the Candida support... I've seen that suggestion in some of the reviews. The caprylic acid may kill off some useful bacteria. Next week I will try twice a day --a gentle increase. Already I have less gas and bloating, and a clearer mind. My arthritis pain levels are coming down... I am rarely using OTC pain relievers now during the day. I still take my Arthritis strength Tylenol, at bedtime so my throbbing hand doesn't wake me up, but that is better now too. Such a small change, and even the dentist said my gums look better today as he fit my new crown on that back molar that broke just before Xmas! Imagine 68yrs old and still nice gums! LOL

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.

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

I made my own kefir for a long time, but quit when I wanted to cut back on sugar. The only way I drink the stuff was to put something in that was loaded with sugar. I haven't tried again since, but there are some decent sugar alternatives today.

I'm thinking of getting the unflavored/unsweetened Lifeway to see if I can stomach it on its own.

The unflavored is not bad. I started with it in fact. It is very smooth--and a bit tingly.... due to the active fermentation. It continues in your frig... In fact when I called them once the gal on the other end chuckled thinking I was calling to complain.
She said people "forget" it in the frig and when it goes past the sale date, it ferments and expands the bottle and may burst!
Ours never lasts that long. Usually they have 2+ months on the date when we get ours.

Gluten free and lactose free. I think it feels nice going down too.
That is something yogurt doesn't do for me.
I started at 4 oz a serving. I still don't drink large amounts at a time as it is acidic. Right now Kroger's added cherry to its offerings and I like that one even better than the peach. Shake it really well before each serving. It is not expensive IMO.

I got the unflavored kind and had a tough time getting it down. I've come up with a solution though....a little cocoa powder and Zsweet sweetener. I've also treated myself to some of my favorite komboucha tea which is outrageously expensive, but very tasty.

I assume you're taking the candida thing slowly to avoid the "Herx reaction" I've been reading about? I'd never heard of it before.

Yes, once a day still...after a meal.

I was doing Olive Leaf, for a while, but each time I got past
2-3 days, I'd have a terrible HERX type reaction, followed by a nice improvement which only lasted a few days, then I was back to square one. I tried that 4 or 5 times, but finally gave up.
The olive leaf did clear up some sinus issues I was having then.

There is a little Olive leaf in the Candida Support, but it doesn't bother me at all--must be a small amount. I am still on only one a day... I am not in a hurry to increase. I'd like my GI to settle more, so then I will try 2 a day. I am really used to the Kefir now, so nothing about it bothers me. Unless I have too large a serving that is. I also sip alot of water all day long too.;)

Still doing gluten free too.

I think you'll find you get used to the Kefir quickly, like I did.

Ok, thanks.

I received my Now Candida Support today and am going to start. Will read up on Herx symptoms better.

The more I read about my FUT2 status and the effect it has on gut health, and the more I think about when all my problems started, the more I think I might be heading in the right direction. Really hoping so.

pain in the whole body too
 

Hi, how you gout a diagnosed about NLD - idiopathic SFN? just for discard of other syntoms? How old are you and since when you have pain? I started with pain in my feet at 18. Now Im 25 and the syntoms became worse since a year! and now covers many parts of the body. I did alot of EMG that came fine, blood test, a QTT (that i dont know if is dependable, but wasnst ok)

I had some type of candida test years ago and it came up negative. Regardless I do think I have some digestive issues.

I just was reminded that if I drink coffee in the morning on an empty stomach my internal thermometer heats up like it does before symptoms are triggered. I usually drink Kefir (I like Lifeway plain unsweetened one but I'm weird) first thing in the morning and I forgot today.

I try to keep my system pretty alkaline. Doesn't mean I don't eat bad stuff sometimes but I try to eat it after some cantaloupe or avocado, etc. I also put lemon juice in my water. When i mess up especially more than once in a row there is hell to pay!

I use to make my own yogurt, sauerkraut, kombucha and beet kvass (fermented beet drink thought to be a good liver tonic) for years. It's so nice to be able to control what goes into the food I eat. Might have to start doing it again. Thanks for the reminder!

I've made a lot of raw yogurt and kraut myself. As far as I know these foods are best for the gut.

Hi Marianolp -
I was diagnosed with NLD idiopathic SFN by an abnormal QSART test (sweat was abnormal at thigh only (not ankle or arm). I also had a skin biopsy which revealed significantly reduced SGNFD at the thigh and not the ankle (both which would support NLD). The idiopathic has come from the ruling out of all causes my docs have looked into. Also my symptoms tend to be in legs, trunk, arms and not the feet as much (main symptoms in the trunk) which also suggest NLD. I'm curious my symptoms started at 18 also and now I am 22....when you say the symptoms became worse since a year do you mean that in the past year they have gotten worse? What is GTT? Your EMG should be normal if you have pure small fiber neuropathy

It's funny you mentioned "raw yogurt." The reason I stopped making yogurt was my source for raw milk from pasture raised grass fed cows dried up. So typical :(

Well when they legislate to make selling it illegal you're out of luck.

I just wonder if anyone has any comment or helpful info along the lines of a gut or intestinal disturbance contributing to their neuropathic symptoms. I have that same buzz and vibrating, like purring, that is through my whole body that was discussed earlier in this thread. It's awful.
Interestingly, just this week a stool sample came back as containing higher than "healthy" klebsiella bacteria. This was ordered because of the terrible gastrointestinal problems that have been worse in the last couple months than usual "bad." My gastrointestinal problems started at the same time as the neuropathic problems four years ago. The gastroenterologist has suggested I start taking a probiotic, but for now not much else. I guess it's a fine line between normal gut bacteria and abnormal? I find it curious why the lab would report it as a finding if it was completely normal.
Thanks for any advice!

Taking pill probiotics had never worked as well as fermented foods for me.

reply
 

QTT is (Quantitative Termo Test) is called QST too, QSART is another test i guess i dont know if it is for the same function. ... Yeah i mean that. It was annoying since 18 years old but in some parts and for maybe two months?, comes and goes completely. since 2012 to Nov last year i had few weeks or days of pain in diff. parts of the body, but since then was pain over the whole body many times that suddenly appeared and remained since then! It was a hell in summer (idk if heat do this worse) i had in new parts of the body and in occasions more painful than ever, so clearly worsened...Skin biopsy too, here doctors dont care about that ..
Did you also had Coldness in the body sometimes or another whatsoever health problem?

So let me make sure I understand correctly - you had on and off pain until november of last year and since then pain all over? When you were 18 did you have any testing/diagnosis? When did you have your QST and what did is show?

Temperature seems to be a big factor for a lot of people here - for me different temperatures trigger different symptoms. So you had a skin biopsy or did not? I do tend to be very cold very easily not sure if that was what you were asking.

Until 19 I had no health problems then the on and off neuropathy symptoms started and from there I have had autonomic heart involvement.

You said doctors dont care about skin biopsies where you are from...may I ask where this is?

Since then i have pain and dont stop for more than few days in a row for example, before the pain lasted 2 months to say something and was in a specific part (feet, one finger of the hand, legs) now it can be in many parts at the same time and more painful, so in those 12 months i dont have 2 weeks without pain to say something. I always have since 18 test for blood, EMG, and Neurological clinical test, but all of these came fine, since it worse the last year i finally did a QST and it show hypoesthesia for heat in legs i think. but idk if it is a reliable study?
I mean with coldness , but maybe have nothing to do or associated with this, but for some reason my feets and parts of the legs (maybe hands) tend to have sensitive to the cold and reamins cold for long time (even when its not much) and it sucks too but I never had a diagnosis for that. (is not Raynaud) You were talking about cold in general body? .. Im from South America, you are North American? i also had for years alot of tongue pain for biting.
There is alot of crap of psychiatrists than pretend i take his meddications because the pain is psychosomatic . diagnosed with no reason.. and i tried his craps and never work, i dont trust anymore in those "doctors"

It sounds like QST testing also looks at small fiber nerves just for temperature sensation instead of sweat production (so different type of small fiber nerve but all small fiber). The QSART looks at autonomic nerves. I haven’t had any experience with the QST testing but I’m sure it is a legitimate test. Have you asked about a skin biopsy from your doctor? If so I would make sure they look at both ENFD (epidermal nerve fiber density) and SGNFD (sweat gland nerve fiber density).

I do tend to have sensitivity to the cold (my skin will sting when I shiver). Not sure about the remaining cold longer though – this may be circulation related? Yes I am from North America.
So the doctors are telling you your pain is psychosomatic?! Don’t listen to them be your own advocate. Maybe try a new doctor?
It is not very common for me to find other young people with similar problems so I always try to find the similarities and differences in symptoms. My main symptom is sensitivity of skin over my back and mid section (one of the reasons mine is labeled as non-length dependent). I have ready quite a few younger people who have milder symptoms for about 4-6 years and then have a sudden increase which makes me nervous as my symptoms first began about 4 years ago so I always wonder if my sudden increase in symptoms is this same thing and if it is here to stay (although I know it is different for every person but I feel like young people’s symptoms tend to mimic eachother more so)

Anyone else have advice for someone dealing with a doctor who has said symptoms are psycosomatic? I don't have experience with this....

Well all the doctors said that something about cold should be circulation, even dont seems it is my case... anyway... my main concerns now are this stuff (burning body pain) and burning painful tongue (but in this case apparently because tongue trauma with the teeth, not neuropathy) im dealing since 12 years or so.. also with acne too :( .....
Is a minority who said iit is psychosomatic, mostly dont go with that , except that they are psychiatrists (wich suxs imo)...also I have been in several psychiatric treatments,because the anxiety consequences (insomnia, etc) of these awful odd symptoms caused me , but I saw no improvement, even in many months of the "treatment" my symptoms appeared.
And no ,i didnt had a biopsy, im seeing a really good neurologist, if he didnt order for that's because it is not necessary, i guess.
I will be tested for Faby disease also.



I have three ideas of my own to try something but ..
*It is something related with poor body posture
* It is something related with bad mental health
* It is something related with bad nutrition

these are just vague theories..but i will look to do change in these to see if something happens.. Do you think posture of nutrition can be related with this?? Did you have bad posture often or are you alot of time in front of pc?
I aslo had read (in other pages) about lupus, lyme, fibro, fabry, candida, shingles (but I guess this if none of these)
Did you received medication for the syntoms?