Feet, mainly.
 

Greetings.

I'm rather glad I found this particular forum.

My story reads a bit like a manual on how to make sure you get PN (sadly).

It all started out with being stressed out to the max. I was (in hindsight) extremely healthy, didn't even know the name of my doc. But my work was extremely demanding - I run my own company - and the first symptoms were ... acid reflux.

Nothing that a good antacid can't cure of course. So that's what happened first: taking antacid pills for about 8 years.

From then on, a lot of things started to go wrong, and I'm not even sure in what order. Alcohol consumption increased. Smoking increased. Then came the hyperventilation/anxiety attacks (of course, I didn't know what it was, I just thought I was having heart attacks...). Then it was tinnitus, which isn't much fun when music is your life. More drinking, getting more nervous, oh great, good thing there's xanax. More working, more anxiety, forget going out in the sun or eating something useful.

I'll spare you the whole story, but I ended up an alcoholic mess, with a very low B12 reading (< 200) and a vit D. so low they were not able to measure it. You can imagine how that felt...

After ruling out Lyme, alcohol induced PN it was. I guess you all know the pains.

While trying to top up B12/D3 - which worked - I still had this alcohol problem. Bad enough that I decided to check into rehab to kick that and the xanax.

I'm now 7 months alcohol free, in fact, I stopped all medication. I had tried Gabapentin, Lyrica, Tramadol (this does read like those medical spam posts :D), but they made me feel pretty bad.

After rehab, the PN in my feet got better first and then worse. It's now creeping up and has reached my knees. Although I no longer suffer the stabbing pains, I do feel like walking on rocks, and standing up is a chore. I am no longer able to function properly.

Time to see if there's something I can do about all that, and that's how I found this forum. I was supposed to restart B12 hydroxocobalamin injections, but I might wait and see if the oral methylcobalamin might do the trick. I also picked up the tips about R-lipoic acid, carnitine, and CoQ10. I do realize that it's a long term endeavor, and expect no miracles - although I am interested to see if my B12 levels will go up like they did with the injections.

I do have quite a few questions, but I'm spending my time her to read up first. I found very useful information, and also was amazed to read that even body length (I'm 6'7") can have an impact on PN.

The one thing that amazes me the most though is the role stress can play on perceived pain. I had to go out for an MRI yesterday (to rule out iron loading - a whole different can of worms...), and the stress of having to go out/walk around was so bad the pain in my feet became so much worse. Today, after having been there, pain is reduced to "normal" levels again. So yes, part of it is "in the head", but that doesn't make it any less real or painful.

Welcome to NeuroTalk:

Nice introduction.

I hope you take your oral B12 when you get it on an empty stomach. That is critical for proper absorption.

Also I'd suggest magnesium in some form (other than Oxide), because alcohol causes loss of this mineral in the urine, and also using acid blocking drugs, lessens its absorption in the stomach.

B12
folate
zinc
magnesium
iron
calcium

All of the above are impacted by low acid in the stomach.

Also I'd suggest benfotiamine for you. Here is that thread:
http://neurotalk.psychcentral.com/post653193-4.html

People who have or are using alcohol become very low in thiamine, and benfotiamine is a superior form of this and can help quite a bit.

It can take weeks and months to help with PN if supplements are going to do it for you. So you have to be patient. Controlling carbs and sugar intake also is a big help. I find for myself that nightshade vegetables are very hard for me to handle.
Tomatoes and potatoes and peppers really cause burning issues for me. They contain solanine which has only recently been looked at as an alkaloid that may accumulate in the body and cause grief. If you search that term...here or on Google, you'll find more on it.

Hi Wide
 

Welcome to Neuro Talk. I have PN in my feet and up my calves.
This has been getting better over the last six months. I do the B12 injections, take co Q 10 and the R lipoic acid. I also have tried not to take any pain killers, go more natural. I see a physiatrist, who works with people at a cellular level. I have reduced glutton, and tried to eat more healthy. Stress is ever present, so I am working on that.
I think stress is indeed a big factor in how we feel pain. Find ways to lower stress, and you will do better. I had my own business also. Had Gerds, followed by Barretts Esophagus just due to stress, so I know how bad that stomach problem can get. Make sure that you arn't eating those antacids like crazy. If you are, please see an upper GI Doctor. You don't want that acid reflux getting worse as mine did. I really do wish you all the best, and how that you can get some good relief. It is indeed possible to get better. ginnie

Hi Welcome! MrsD already covered everything, she is amazing that way! :)

I can vouch for the benfotiamine, it's been a miracle for me, can't go a day without it.

You mentioned taking acid supplements alot in conjuction with this pn, for whomever knows, is there a corralation between the two? Like the tums and other antacids, is the drugs in direct correlation with PN???

I have read that acid reflux is the result of too little acid, not too much, and the cure, instead of antacids, is betaine (from beets) supplements.

Hi Joano
 

I get an upper GI every six months. I started acid reflux, and began taking a proton pump inhibitor. This helps to stop the production of stomach acid. I have Barretts esophagus now. I believe stress triggered it. Only the last month have I had a break, and not have to take that med. What ever the cause, the effects can be bad if not treated. ginnie

Welcome. I bet you will find more ideas here. There are a lot of good things to do. I have Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome) that was severe. Autonomic Neuropathy was the cause, happened after surgery and an antibiotic. Not sure if one or both did this. I am doing fantastic now. I take many great supplements. The best doctors for me have always been Integrative MD's. They can help the cause with diet and supplements and not give toxic meds. for everything like most doctors. They know the right blood tests to give and how to use them.

Alpha Lipoic Acid, Carniclear, CoQ10, Magnesium and many others have been wonderful. My vit D and B 12 have been very low in the past. Those are good now thankfully. My diet has always been good, but now, I watch sugar and carbs carefully. No gluten also.

Dysautonomia is awful...on top of my Chronic Fatigue Syndrome. Sick for so many years...I am happy to be doing well now.

The diet and supplements are so important. Good doctors that know what to do with them also. It all takes time to heal or improve for sure.

I'm alcoholic too, and as far as I'm concerned, alcohol caused my problems too. Never got a definitive answer from docs, but it doesn't matter. It's been about a year for me since the light came on in reference to drinking. I'm 6'3". I have PN in my feet, and it hasn't spread yet. I take B-vitamins, multiple vitamins, had B-12 shots, magnesium, calcium, potassium (because of the diuretics I take sometimes for swelling), etc. Neurontin, tramadol, vicodin, cymbalta. On and on. Nothing changes, which I suppose is good, because it hasn't gotten worse. But the pain is the same. I'm lucky, I work at home and have a laid back job, but the emotional aspect can't be understated - it's real pain you create - somehow the nerves are excited when you're under stress. Good luck and welcome.

Thanks for the welcomes. :)

B12 on empty stomach: check. It makes a lot of sense.

Benfotiamine: I had come across it here, but didn't realize that this (well, the older version) used to be one of the choice "drugs" to treat PN - especially when alcohol had been involved. Ordered.

I don't know the exact mechanism, but I have seen it confirmed time & time again that antacids - especially when taken for a long time - mess up your ability to properly metabolize B12.

To be clear: I stopped taking them about 2 years ago. And as of June of this year, I stopped all medication/supplements/alcohol, to get a "base line reading" of where I'm at. Eating healthy - well, let's be honest: eating! - took care of some things, but not of B12 levels and - I forgot to mention - very low folic acid levels.

I might well be in a position where I no longer am able to methylize B12/FA, so it will be interesting to see what happens with the supplements I just ordered.

Nightshade plants... well, yes: I think I have to be careful there. I love peppers and grow them myself, so I hoped this not to be the case, but I have noticed that there is a correlation with spicy food (chile con carne etc) and the needles & pins thing.

Mind you: it's not all bad news. Since stopping any alcohol/benzo intake, I feel so much healthier that it's hard to describe. Definitely the best thing I ever did. I know you can never say never, but if I can help it, I never want to go back to the very dark place of drinking daily.

And yes: patience. It took 10 years to destroy my nerve ends, so I'm not expecting to change that around in a couple of months.

As I'm typing this, I almost have no pain in my feet (2/10 on the scale?). I have to believe I can turn this around by eating healthy, taking the supplements, checking my blood panel regularly, and staying off the booze.

Back to reading. :)

Welcome!
 

Welcome Wide-O! I recenty joined this site and have found this group to be a wonderful resource.

Congrats on stopping the alcohol/benzos! I hope you continue to see the benefits to your PN.

:) Amy

Height is a big contributing factor. I am 6'2", a woman, with extremely long arms and legs. My podiatrist, not my neurologist, was the first one to diagnose the PN, and to tell me that height makes it much worse. Mine is hereditary so nothing I could have done to prevent or improve it, but height still complicates matters, like trying to run a really long train set from one transformer-too much distance with all the extra resistance that implies and a weakened motor.

There are a number of research papers out there in medical journals hypothesizing that the reason more men get PN is simply because they are taller.

Congratulations on having the character to face it all and take responsibility for, not only the problem, but finding the solution.
As to the height issue; several of us who are vertically challenged also have PN. I think the only benefit of being shorter is that it may take somewhat less time for the peripheral nerve re-generation to reach its ends.
Best of luck with it all,
Steven

Trying to kick what was working
 

Hey all, at some point now I guess I need to relay what was working for me but now I'm quitting it, not so easy but making it. The what is "Suboxone", usually used to treat addicts kicking opiates. A pain clinic prescribed it and it took away 50-70% of my feet and hand neuropathy pain away, still had to be careful about how much time I spent on my feet but it got my life going again about 6 years ago. Now I'm trying to quit it due to the pain clinic causing too much trouble for me. Frequent mandatory appointments with a drug test I'd have to pay for, also forcing me to see an "in clinic" shrink before I could get a refill. OMG I feel more like an addict than someone being treated for pain! Anyway I got tired of the bother enough to now try some old alternatives. Diet, Celebrex, Neurontin high does, Cymbalta progressively increasing. I hope this all works and with some help from this forum it just might~ later ~ Raz