SFN - alcohol makes symptoms worse but is it the cause?
 

Hey, so for the last 3 1/2 years i have been having, what i now realise is nerve problems with my hands and fingers. When it began, i was heavily stressed at work but safe in the knowledge i was about to embark on a 6 month trip travelling around south america. Just before i finished up with the work however, i noticed my fingertips had suddenly started to feel sore and were hurting when i touched the keyboard on my computer but, i just put this down to being RSI due to the heavy workload i had been under, and expected it to heal over the course of the travelling. Unfortunately, nothing changed.

Fast forward to today, past all the theories on what the problem could be (RSI, RA, arthritis, TMS) i have now come to the conclusion that it is small fiber neuropathy. Predominantly showing as allodynia in my fingertips - a sunburnt feeling which spreads up the side of my fingers, up the nerves into my forearms but only when my fingers are used i.e. tapping on a keyboard, lightly swiping a smartphone. I noticed also that 6 months ago that my left foot has started to have some paresthesias as well, feeling kind of cold and slightly prickly underneath.

After going through multiple docs and neuros i finally found one who diagnosed me with SFPN, which seems to fit. I have had all of the blood tests available and ENMGs, which came up fine. Aside from a high B6 due to Bvitamin supplementation, which has now lowered, and also a Lyme test which i was told was high but referred only to a recent infection and probably wasnt the issue... (doc offered me antibiotics for this but i declined as he said it was very unlikely the cause and ive read about people getting bad neuropathy from the antibiotics themselves).

Now, the only time ive ever noticed any change/ worsening of the symptoms is when i am hungover, sick or tired. Ive read about alcoholic neuropathy and have considered this but im definitely no alcoholic. Its true, I have always drunk a fair amount of alcohol, yeah, im a 30 year old british male so its very common for us to go out on weekends and drink with friends, but i only ever drink 4-5 drinks if i do go out and im quite happy to go several weeks without drinking. Nonetheless, starting this week, i have decided to quit alcohol entirely.

Is it common to have worsening neuro symptoms when hungover or is it just because my body is run-down? Do you think that quitting alcohol will "cure" these issues? Should i reconsider taking the Lyme antibiotics?

My SFN is definitely quite mild and progressing slowly, i know it could be 10x worse, but reading these forums really starts freaking you out!

Thanks for your responses :)

For symptom starting in the upper extremities--
 

--you should also investigate the possibility of cervical spine nerve root compression--radiculopathy--as your symptoms do sound quite consistent with compression of the C6/C7 nerve roots.

This is more common than many think, especially these days in our keyboarding and driving environment, which can contribute to cervical spine problems--it's not just a condition of sudden trauma. An MRI of the area is a good idea just to make sure.

When trying to reveal a PN trigger, it is often useful to keep a journal of your days. What you ate at each meal, activities and exposures to toxins (golf courses, solvents, gardening chemicals etc). Food intolerances can cause PN symptoms... nightshade veggies can be a big culprit. (potatoes, tomatoes, peppers). Paprika and hot sauces, are part of the nightshade family.

MSG in processed foods can stimulate NMDA pain receptors.

Consider getting B12 measured. You should be at 400pg/ml or above. Lab ranges today are outdated still and report normals in the 200 range.

Sometimes the DNA mutations in methylation chemistry in the body will cause nerve damage. Getting this DNA testing may reveal a genetic error of metabolism for you.

MTHFR Mutation | MTHFR Gene Mutation | What is MTHFR? - MTHFR.net

None of the above are reliably targeted by doctors, but they are real issues that occur in people daily.
Your journal may reveal your trigger. We have had males
come here with hand issues that traced to overuse during exercise. (hands from weight lifting or push ups and feet from excessive running or bad shoes). Tying shoes too tightly, and wearing tight watches can compress nerves as well.

In regards to your alcohol symptoms, it may be that you are low in B1..which is thiamine.
Some people are genetically not able to handle alcohol because of this, and so they have symptoms with this problem. B1 also handles carbohydrates as well. So sugar and carbs may
cause PN symptoms due to poor metabolism. When you read here you will see some people posting about benfotiamine ( a longer acting B1 type) helping them. This supplement really began in Europe and at one time was very expensive. But now it is affordable and commonly available in US.
Trying a paleo type (low sugar and carb) diet may change your symptoms, and a journal would show that for you.

Sorry to hear that you're in this state. I'm in my 30s too and with SFN. It started in my hands and feet and then with some autonomic symptoms and then expanded to my face and trunk, and now it's all over. The cause is still not known, but autoimmunity is suspected even though all tests have turned up negative.

I still suspect alcohol myself, since I wasn't an alcoholic but I did binge drink and that can cause PN/SFN. I stopped drinking as soon as I knew alcohol was a neurotoxin and noticed the correlation between a night of drinking and my symptoms. I haven't touched it for a year or so now.

Stress and exhaustion are huge trigger for me, so I try my best to reduce both, getting plenty of sleep and avoiding stress.

Diet is another trigger. With some unfortunate lapses, I've been on a paleo diet or the autoimmune protocol, and it has made a huge difference. In fact, for a while I didn't even eat fruit and so it was more of a paleo ketogenic diet, and I'm thinking of going back into full ketosis again. Here's a link to a paleo autoimmune protocol, which is really based on the idea that there is intestinal permeability or leaky gut and inflammation and the idea is to reduce it: http://www.thepaleomom.com/the-autoimmune-protocol.

It may be worth trying this cream: http://www.neurotalk.org/peripheral-...min-cream.html. I continue to find great relief.

I also use a number of supplements always looking to finding ones with the fewest fillers and additives. I do use B12, benfotiamine, D, NAC, digestive enzymes, C, folate and some others.

I wish you good luck in finding the cause and healing. It's not a fool's errand; people do find the cause at times. it's certainly not impossible and definitely worth the effort, however frustrating it can be.

Thanks everyone for your speedy replies,

@Glenn, i had at one point considered the possibility of a C6/C7 radiculopathy however, as i have never had any neck pain, the symptoms are spread amongst all of my fingers and my left foot we decided that there wasnt enough evidence to warrant further testing i.e. an MRI - im a little paranoid here that doctors may just pick up on whatever they can see and attribute that to your problem leading to unnecessary surgery..


@MrsD - thanks for your valuable input! ive read so many of your replies already having been reading this forum for some time now :)

Regarding a journal, i have actually been keeping one for around about 3 or 4 months now, though i cant see any correlation between my symptoms and my diet whatsoever. The only thing which i can guarantee to make things worse is a day or two after drinking alcohol, the more i drink the worse it is, and also a poor nights sleep.

i had already tried going gluten and dairy free for about 3 weeks but with no change so now im starting out of the keto diet along with no alcohol. Ive yet to try the nightshade diet though or MSG, both sound like good options! :)

Regarding B12, i had that tested and it came in at 475pg/ml which seemed ok and my b6 was actually 800pg/ml initially but thats now down to 180. Its still high but I get the feeling b6 is actually a red herring anyways... With the MTHFR Mutation would it still apply now that the b6 levels have returned to more normal levels?

Starting last week I am now taking bentofiamine - 500mg a day, Alpha L acid - 250mg and also B12 - tablets at 5000mg just for the hell of it to see what happens :D Though this is all early days so i havent noticed any improvement yet. I will keep you posted.

How long would you think i need to test these diets/ supplements for to get a result? 1 week? 3 weeks? longer?


@David - Sorry to hear about your symptoms, can i ask how quickly did they spread for you from you hands/ feet to the rest of your body? Did you also notice symptoms were stronger after a night drinking? and did it make any difference if you drank things other than beer?

thanks again!

I hope you are using methylated B12 (methylcobalamin) and methylfolate? Your B12 is quite low at the level you posted.

B6 is only marginally affected by the mutation MTHFR... it is B12 and folate that cannot be activated properly in people who inherit this problem.

As a rule only 2 - 3 weeks is needed for an elimination diet. The gluten issue requires several months however of avoidance.

Histamine can also be culprit....
Here is my histamine thread.

http://www.neurotalk.org/pn-tips-res...ight=histamine

There are over 100 causes of PN so finding a trigger/cause is difficult. However, once you get a handle on flares and what causes them, you can tailor your supplements to what you found is your trigger(s).

Thanks. I don't have as much pain as I have tingling, numbness, creepy crawlers, electrical currents and the like. But I do have pain now and then and more of it recently, but so far I've gotten off relatively easily, if someone with body wide SFN and so many symptoms can say such a thing. The worst symptom is shaking or internal vibrations especially when I try to sleep. I never have peace when I lie down, which is depressing to say the least.

Anyway, if you search under my username, you'll see a My Story thread or some such thing where I go into detail about my case. It spread within months and became body wide, and I gave up all alcohol, so I wouldn't know. 95% of my drinking was beer though, and beer is the worst because of the grain, gluten to be precise, and so the impact it has on your intestinal lining and gut microbiome. I think alcohol/beer (not to mention your typical high carb North American diet) contributed greatly to my current predicament, to creating intestinal permeability, inflammation and possibly autoimmunity. There is plenty of evidence for this, but sadly I didn't know about it until it was too late.

The left over symptoms after drinking come from the aldehydes that are not being removed quickly enough from your body.

And yes the type of alcohol matters. There are different congeners in various alcohol types. The popularity of highly filtered vodkas reflects this. The filtering and purifying of vodkas today remove the congeners which are produced by the fermentation process.

Biology of a Hangover: Congeners - How Hangovers Work | HowStuffWorks

We have a long thread here about alcohol and the body damage it causes, and is also a support thread to stop drinking entirely.

http://www.neurotalk.org/alcoholism-...europathy.html

Scattered thru that thread are new studies about the toxicity of alcohol on tissues. My internet is slow tonight so I can't isolate those links for you at this time.

And--
 

--cervical radiculopathies, especially when they are lower in the neck (C6/7/8) don't necessarily cause neck pain, but commonly refer pain to the medial scapula on the affected side (or, in my case, both sides) with pain progressing down the arm and into the hands. Sometimes neck pain is there, but often not. And if cord compression is involved, one can get symptoms in the torso, legs, feet . . .

Take a look at this image of typical radiculopathy pain patterns:

cervical radiculopathy - Bing images

And, of course, these explanations:

http://emedicine.medscape.com/article/94118-overview

Cervical Radiculopathy: Symptoms, Causes, and Treatment

@ MrsD - So you still feel 475 is low for b12 then? thats interesting! i am just taking the "Jarrow Formulas" Methylcobalmin - 5000mg tablets at the moment, no Methyfolate. Do they need to be taken together to work best? What does Methlyfolate bring to the table exactly?

Should i see no benefit from my current regime in a few weeks i think i will enquire about the MTHFR test, i did ask before but the neuro felt there should be a family history of it which I dont have. There are no neuro symptoms in my family at all. Ialso managed to get my doc to do a blood test for celiac which i should know about this week.

I am interested to read a bit more about the histamine connection though, ever since i was stung by a jellyfish in the Cook Islands around 10 years ago i have had spontaneous weekly eruptions of urticaria for which i take Loratadine. Ive never connected the two things before but I wonder if the loratadine is just covering up the most prominent symptoms and underneath it all it could actually be linked to the SFPN...

thanks also for the congeners info, it would be interesting to see whether i have the same worsening of symptoms after just drinking filtered vodka then, although that test will have to wait :D


@Glenntaj - thanks for the additional radiculopathy info, i see what you were getting at now, there certainly does seem to be some chance it could be linked to a radiculopathy based on the links you gave. You mentioned that you have something like this, do you notice any link to alcohol worsening your symptoms?

My pain actually begins in all my fingertips and then grows to affect the nerves down the sides of my fingers, my forearm and my elbow, where it stops, it has never gone past that area but affects both arms equally. If it was a radiculopathy of this type, would this be a common set of symptoms? I would have thought that something like this would have either improved or worsened over time though...


@DavidHC - i just read through your history, sounds like it came on quite quickly. Did you suspect alcohol was the cause from the beginning? i see you have found a clear connection to foods which is something i havent seen personally so far. Was it immediately obvious that your diet was so indicative of worsening symptoms, could you always see you had a reaction to particular foods the same day/ day after?

Doing a search of "aldehydes and nerve pain" i found this article, which links nerve pain an out of control fungal infection, which i thought was quite interesting...
*************

Most of us here that use B12 keep our levels at 1000 or more.
400 is the new acceptable low...so you are borderline.

Both methylB12 and methyfolate need the enzymes to be methylated from inactive food sources. Folic acid is inactive until methylated.

Many people can have this mutation, and some only have it on one chromosome, so they slip by for years until something sets them off and they need more methylation to repair damage to tissues and nerves. This is called homozygous. If the mutation comes to both chromosomes, it is called heterozygous and appears earlier in life. So some people don't show the symptoms depending on how their mutation occurs. It can get pretty complicated, but as time has passed the percentage reported in studies has risen from 10% of the population to about 40% having some form of the mutation.

Read over at MTHFR.net... you'll see. At pennies a day for both methylB12 and methylfolate, it is not burdensome to use them.
Stop them for several days before testing, and be sure to take the B12 specifically on an empty stomach as food present in the GI tract blocks absorption.

Your experience with the venom may be connected, as the body may make antibodies to it, which remain after the initial incident. They can then contain peptide sequences similar to our own tissues, which then get attacked in the future. This happens with some viral illnesses too. This is called molecular mimicry.

Some PNs are mechanical --- involving compression of nerves somewhere in the wrists, ankles and spine.

Some are chemical -- drug induced, toxins, poisons, chemo etc.

Some are immune mediated-- autoimmune

Some are metabolic/hormone induced-- diabetes, thyroid malfunctions, paraneoplasia, etc.

Some are nutrient deficiency induced-- B12, B1, B6, folate, Vit D and E etc.

No one loves vodka more than me. It makes me a happier, better, more productive and fun-loving person. I swear to God, I was made to drink. Unfortunately, however, even one drink causes the fuzziness in my feet and legs to increase and move up my body. And I never drank one drink. Always a pint or more. I love vodka!
For a while, I'd go two weeks off, two weeks on. But then the fuzziness in my legs stopped going away during the off weeks. I'd done permanent damage. I could walk a city block before, now I can't. Now I can barely make the rounds of a mini-super-market.
So, just three week ago, I stopped drinking entirely and hope to stay forever a less happy, less better, less productive and less fun-loving person.
What a flippin' mess.
I do not think I was ever an alcoholic, since I could stop drinking at will. And I don't think booze was the cause of my disease (the CIDP variant of PM), since it started during a 19 year stretch when I didn't drink at all. But I know for a fact that my beloved V made my symptoms worse and that I allowed it to do damage that'll never leave.
Sigh.
Unlike everyone else here, I don't take any supplements. I've tried all of them over the years and none seemed to make a difference. That said, I'll probably soon start up with them again, to see if now is different. One can only hope.

wow, okay reading through that MTHFR website is hard work, as was the molecular mimicry wiki page! :D Im usually a fairly technical guy but im definitely struggling with all the tech terms used there! From what i can gather though it seems like it could be very feasible that i could have the MTHFR mutation though...

With this is mind, I wanted to clarify: as a quick test would you say that taking both methylB12 and methylFolate together is the best way to see if i have the MTHFR mutation, outside of having the official MTHFR gene test? if i take the MethylB12 and the Methylfolate together for 3 weeks or so, should i start to see some results? and what quantities of each should i be taking daily to start?

thanks :)

It did. Well, sort of. What I describe there, the intense shaking and leg symptoms that spread to my entire body within a few months, maybe 2-4, did come on quickly. But I may have also noted there that in hindsight during the last year I've come to realize it went back at least a couple of years before then, that there were symptoms then, just not obviously connected to neuropathy. Just a few months earlier my hands would go all dry and sometimes even numb, which I thought was weird. A few months before that I had numbness around my nose, so my upper cheeks. I didn't make much of it. Both these symptoms would be more intense during a night of drinking beer and the morning after. I didn't make the connection, or I didn't want to. Idiocy either way. Even before all this, perhaps several months before it and at least a year before the neuropathy became apparent, I had heart issues, palpitations, which at first presentation lasted almost 2 days. It happened while I was drinking beer and eating very carb dense meals, lots of corn, rice and bread. I didn't make the connection really. I simply thought I was eating poorly, so I stopped eating out as much and drinking so much beer. It improved, but then my old habits returned. The palpitations never returned to that extent, but they became a normal part of life, now and then a skip here and there. I did see a cardiologist who ran tests, including a stress echo, but nothing showed up. Of course not, because now I know it was autonomic dysfunction related to SFN. Even further back, perhaps a year or two before the heart issues, I had soars on my toes that were unexplained, which now I know can be a symptom of SFN, and I'm willing to bet it was.

I suspected alcohol from the start and still do, but more so because of what it did to my gut, all the grain, the gluten and the high carb diet. I'm sure of it.

When I went on the diet I saw some immediate relief I think, but I can't remember as I have no notes form them. But I can recall for certain that a month or two in I had a great deal of relief and it was obvious. Now, if I have carbs, even fruit, I can feel it, and if I have grains, especially glutenous ones, the affect is obvious, both immediate and long lasting.

It's interesting you mention fungal infection: candida is possible for many who drink lots of alcohol, especially beer, so ones with lots of grain and sugars. This was what I suspected and all I knew about when I started my diet. Now I know quite a bit more from research over the last year.

Hope all that helps.



@DavidHC - i just read through your history, sounds like it came on quite quickly. Did you suspect alcohol was the cause from the beginning? i see you have found a clear connection to foods which is something i havent seen personally so far. Was it immediately obvious that your diet was so indicative of worsening symptoms, could you always see you had a reaction to particular foods the same day/ day after?

Doing a search of "aldehydes and nerve pain" i found this article, which links nerve pain an out of control fungal infection, which i thought was quite interesting...

Yes, I know... some of the new information is very sobering.
Now you know why doctors don't inform themselves about this and other topics well. They have very little chemistry and drug classes in school. And they have learned to rely on salespeople for drug info, which is not good for patients, either.

If you expose yourself to the technical stuff a little each day you will learn it eventually. Not too much at one time, as you need to sleep on it to learn it well.

And yes, you can just take both methylated B12 and folate, and see what happens. It takes time to get better though, so don't expect a fast result. Neither one of these nutrients has terrible consequences like drugs do. The only big contraindication for B12 is having a condition called polycythemia vera...which is too many red blood cells. Otherwise B12 is quite benign. Just take 800mcg of the methylfolate daily as higher doses require a prescription RX.

Ok, so... with some further research i managed to find this website:**,which made reading about MTHFR gene much more straight-forward, and this has helped me to understand quite a bit more about it now :)

On the back of this, and your advice MrsD, I have ordered some B9-methylfolate to add to my b12 methlycobalmine supplements, which i will start taking alongside the B1-benfotiamine. For the purpose of clearer testing I have decided to stop taking Alpha lipoic acid for the time being.

Alongside this regime, I have quit drinking alcohol and am currently 4 days into a ketogenic diet which i do hope to continue. Unfortunately however, the keto diet may well fall apart from next weekend when i am due to go on holiday, i will definitely not be giving in to drinking. I do still feel though, that a 1 week keto trial will be worthwhile, if for nothing more than just to test the water.

Im still awaiting the results of my celiac blood test, though feel this is very unlikely, so further dietary changes, post-keto, would be to try removing Nightshades, histamines and MSG.

I will report back to tell how i am getting on in a few weeks, i do understand that this is not a quick process though so i am not getting my hopes too high but hopefully i will have some good news.

Thanks again for all the info, everyone :)

Lyme can cause these issues. There are people on this message board who have various types of neuropathy from Lyme and related co-infections. When I started antibiotics, I had a lessening of symptoms at about the 2 week mark and I've been getting better every month since then. You can read posts under my name if you want to learn more about my situation.

And be aware that the standard test you get at the doctor's office for Lyme is inaccurate (up to 50% of the time according to Dr. Horowitz). Many people choose to find a Lyme educated practitioner and are tested in other ways (iSpot, Igenix, Stony Brook, etc) that are more accurate especially if you've been infection for a long period of time without treatment. If i were in your shoes, I'd not cross Lyme off the list of root cause possibilities.

Dr Jaller's post about Lyme neuropathy:

LymeMD: Peripheral neuropathy: a very common Lyme problem

LymeMD: ER diagnosis


Good luck and I hope you find a cause soon!

High b6 serum
Levels and neuropathy, sounds like an obvious case of b6 toxicity.

Tachycardia can result from high amounts of consumed alcohol
(among other things)

Tachycardia | Fast Heart Rate

This can occur with large meals too in combination with alcohol.

Yup, unfortunately had this plenty of times, too much alcohol and/or food. It's sad really. You know you're harming yourself when this happens, and yet without knowing the long-term fallout, I would do this to myself regularly, weekly.

Hey, just wanted to post up quickly to say how im getting on.

My symptoms before starting supplements were:

• Medium level allodynia in the fingertips.
• Medium level nerve pain in hands with use.
• A mild ache and twitching happening on the R pinky finger
• Medium level paresthesia on the top of my left foot with some prickling underneath when walking.

I have been taking the following supplements for three weeks so far:

• Benfothiamine 250 mg
• Methylcobalmin 5000 mg
• Methlyfolate 400 mcg

and as of today I have also started taking:

• D3 250 mg
• Zinc 375 mg
• Potassium 300 mg

How does that regime sound?

Unfortunately I haven't seen no improvements so far, but its very much still early days so obviously not expecting too much.

Thanks

hey, ive started to get some muscle tremors/ twitching and im suspecting its due the supplements rather than the neuropathy as the twitching is in my knee and down the back of my thigh, far from my hands and feet where the other sypmtoms reside.

Is it possible that the supplements i have been taking could be causing this reaction? It doesnt seem to fit the 'usual' small fibre model i have read about...

Alongside this, i actually havent noticed much improvement at all since i started taking the supplements, is it still considered early days if i have been taking them for 1 1/2 months already?

thanks

If you consume meat and fish, I'd drop the zinc. Are you sure you are taking 375mg of that a day? Zinc toxicity will cause nerve damage over time.
Here is a monograph on zinc:
Zinc | Linus Pauling Institute | Oregon State University
notice that the RDA is 11 mg.

High zinc may throw a person a copper deficiency. I'd get a blood test for zinc, copper and the zinc/copper ratio.

What does your D3 dose mean? D3 is typically listed in IUs and not milligrams.

Sorry, i realise that i'd made a few mistakes there, (i live in finland and reading the labels here is somewhat tricky to a non-native finnish speaker :D )

Here is the corrected regime:

Daily:
B12 5000mcg
B9 800mcg
B1 500mg
Mg 600mg

These 3 i take only every few days:
D3 25 ig
Zn 15mg
K 300mg

I was expecting to see some results by now from the daily regime but nothing yet. Does supplementing usually help in the average idiopathic case? Or is it only more helpful in finding the underlying cause, eg Methylfolate and MTHFR deficiences or Bentofiamine and alcohol related issues?

If you tested positive for lyme disease, you probably should take the antibiotics. The longer the disease progresses, the more complex the symptoms and the harder it is to get rid of. You also should see a lyme specialist.

Small fibre neuropathy
 

Hi did you sort your small fibre neuropathy out I’m in the same position as you was hands and feet now full body not drunk for 2 years