[Ouchiefeet]

Hello,

I am 42 and have just been diagnosed with Small Fiber Neuropathy in my legs and feet.

It started a few years ago when I started having burning heat in my feet that forced me to find any cool spot I could to stick them on, in, near anything that might help cool down my feet and stop the pain. I then started having rocks at the bottom of my feet feeling and went to my foot doctor who told me I had no padding on the bottom of my feet and to try some orthotics.

I was frustrated but what could I do? They did x rays nothing showed wrong with my feet.

During that time I started feeling really run down and was having some severe heart arrhythmias. I was sent for an ablation and during the procedure things went nuts and I had to be cardioverted 4xs to get my rate back to normal it spiked to 600 I was told by the doctor to the point it quivered. They aborted the ablation and decided I had too many bad spots in my heart to ablate.

During all this they also found very low B-12 lvls 140. I started treatment for that and I am currently giving myself injections once a month. My levels are going up slowly and I had hoped that with the injections I might feel some relief but sadly that is not the case and we have ruled out neuropathy due to low B-12 even though I still have and will remain in treatment the rest of my life.

I have a positive Ana with speckled pattern but no known reason for it as I show no real classic signs of any of the auto immune disorders associated with that so doctors hesitate to diagnose anything but do have me on plaquenil.

I suffer from arthritis and fibromyalgia which has been under control for many years.

So that is the history fast forward to 3 months ago. My feet went totally and utterly nuts. The pain has increased to the point I can barely step on my feet. I kinda shuffle to walk the pain is so bad. The pain and burning has traveled from my feet up my leg to just below my calves. I can't sleep, I can't hardly walk. I have seen two neurologists including one in Boston who have diagnosed small fiber neuropathy with no cause known at this point.

I am on Gabapentin and narcotics to help with the pain. In the past month the Gabapentin and narcotic combo has stopped working and I am now being sent to a pain management clinic.

Does anyone here go to a pain management clinic? What can I expect? I am scared to death of the thought of nerve blocks or any type of injection into my spine? Is that what they do? I am hoping for some more gabapentin type meds and a stronger narcotic. I am scared of anything else. I am willing to sleep this off honestly.

If you have made it through this thank you for reading. If you have any insight or things I might try to help me it would be appreciated. I told my doctor today this is like living with the worst toothache you can imagine and living with 24/7 and never having the option to have it pulled to get rid of the pain.

Oh and too boot today on top of all the wonderful news I got. I have Shingles now as well they popped out yesterday doc diagnosed today and I have started treatment for that as well. Lucky Me!

[16rhonda]

Hi. U do have a lot on ur plate. The shingles is probably the reason u are feeling run down. I had when i was 38 yrs. ya exhausted. Did u have a skin biopsy or genetic blood test to diagnose ur sm fiber neuropathy? I had both tests which was neg to rule out sm fiber n. Cause I have a few nerve compression syndromes. They send u to a pain ctr when u have pain that cant be fixed by surgery. Pain drs are supposed to be experts w pain meds I dont think they can treat sm fiber n. w injections. If neurotin stopped working for u they will probably try lyrica or lamcital.
Good luck! B][/B]

Originally Posted by Ouchiefeet

Hello,

I am 42 and have just been diagnosed with Small Fiber Neuropathy in my legs and feet.

It started a few years ago when I started having burning heat in my feet that forced me to find any cool spot I could to stick them on, in, near anything that might help cool down my feet and stop the pain. I then started having rocks at the bottom of my feet feeling and went to my foot doctor who told me I had no padding on the bottom of my feet and to try some orthotics.

I was frustrated but what could I do? They did x rays nothing showed wrong with my feet.

During that time I started feeling really run down and was having some severe heart arrhythmias. I was sent for an ablation and during the procedure things went nuts and I had to be cardioverted 4xs to get my rate back to normal it spiked to 600 I was told by the doctor to the point it quivered. They aborted the ablation and decided I had too many bad spots in my heart to ablate.

During all this they also found very low B-12 lvls 140. I started treatment for that and I am currently giving myself injections once a month. My levels are going up slowly and I had hoped that with the injections I might feel some relief but sadly that is not the case and we have ruled out neuropathy due to low B-12 even though I still have and will remain in treatment the rest of my life.

I have a positive Ana with speckled pattern but no known reason for it as I show no real classic signs of any of the auto immune disorders associated with that so doctors hesitate to diagnose anything but do have me on plaquenil.

I suffer from arthritis and fibromyalgia which has been under control for many years.

So that is the history fast forward to 3 months ago. My feet went totally and utterly nuts. The pain has increased to the point I can barely step on my feet. I kinda shuffle to walk the pain is so bad. The pain and burning has traveled from my feet up my leg to just below my calves. I can't sleep, I can't hardly walk. I have seen two neurologists including one in Boston who have diagnosed small fiber neuropathy with no cause known at this point.

I am on Gabapentin and narcotics to help with the pain. In the past month the Gabapentin and narcotic combo has stopped working and I am now being sent to a pain management clinic.

Does anyone here go to a pain management clinic? What can I expect? I am scared to death of the thought of nerve blocks or any type of injection into my spine? Is that what they do? I am hoping for some more gabapentin type meds and a stronger narcotic. I am scared of anything else. I am willing to sleep this off honestly.

If you have made it through this thank you for reading. If you have any insight or things I might try to help me it would be appreciated. I told my doctor today this is like living with the worst toothache you can imagine and living with 24/7 and never having the option to have it pulled to get rid of the pain.

Oh and too boot today on top of all the wonderful news I got. I have Shingles now as well they popped out yesterday doc diagnosed today and I have started treatment for that as well. Lucky Me!

[mrsD]

A shot once a month is not doing much for you.

You can raise your levels faster and more efficiently with
oral activated methylcobalamin. Within 3 mos you can be over 1000.

Since this is faster, and very inexpensive, I'd do that. The shots are typically cyano form and some people cannot convert/activate it to the methyl which is what the body uses.

Methylcobalamin is now appearing in stores, Walgreen's has one and Costco now. I'd suggest you do 5mg a day on an empty stomach and get tested in 3 mos.

Here is a video on this subject:
http://www.youtube.co/watch?v=BvEizy...ature=youtu.be

and my thread with more explanations and medical references:
http://neurotalk.psychcentral.com/thread85103.html

Waiting around for B12 to work, is not working for you.
You may have the genetic error in MTHFR and cannot convert
B12 and folate properly, so your nerves suffer. There is a DNA
test for this, from your doctor, or online at 23andMe. If you have this error, the cyanocobalamin shots will not work for you and you will continue to deteriorate.

This link explains what doctors SHOULD be doing for patients:
http://www.aafp.org/afp/2003/0301/p979.html

One injection a month does NOT work for everyone equally.

[Synnove]

To Ouchiefeet
I hope you will feel better soon. With the Shingles in addition, it must be hard. I have small fiber neuropathy, and I take this for symptom treatment: Lyrica and Amitriptyline. and it helps. I use a special gabapantin cream for topical to the feet. I also sometimes use the epsom salt. But my neuropathy is all over, and I mean all over. That is brobably due to the fact the doctors say it may be due to my small vessel vasculitis, and this has caused poor blood supply to the small nerve fibers.
The Lyrica medicine can be hard to get used to. I find that it is very powerful, and can almost "take you breath away." And it has withdrawal symptoms when stopping. I have slowly tapered it down, and the Neurologist wants me to higher the dose of Amitriptyline. So that is what I am doing
I hope your doctors will find a comfortable treatment for you.
YES I AGREE WITH YOU>!!!! Small fiber neuropathy is awful.

[St George 2013]

Hey Ouchiefeet........confirmed small fiber neuropathy (skin punch biopsy) and heart ablation......and now they say all that is left for me is pain mgmt. due to my biopsy results.

So sorry to hear about your heart ablation....they were able to burn 11 places in my heart and left 1 because they didn't like where it was as far as burning it.

I also had burning feet for a few years but never paid much attn. to it....I am diabetic but my symptoms came on strong a month after my chemo ended (taxol/carbo) for a uterine cancer called Serous.

I have learned much from this site and was my own advocate. The dr's have been nice but not extremely helpful. I went to see my first pain mgmt. dr and really liked him but the office area was dirty. He said since 1800 mg of gabapentin a day was not working and the nerves in my feet are actually dead my only option was to get insurance to pay for a neurostimulator. He said I would have to have a sympathic nerve block first before my insurance would agree to a stimulator. Well....I thought about it a few days and decided I did not want to go back to that place even though I really liked the dr. So I decided to try another local pain mgmt. dr.

I had the appoint this morning at 10:30 and this is how it went...filled out loads of paperwork, didn't see the dr but his assistant who only read through what I wrote on the papers but had not studied my file on the computer (linked to Emory's computer in Atl) and then told me to go back to the waiting room and they would let me know what they wanted to do. The receptionist called me to her desk and handed me an appoint card for next Tues.....I asked what the appoint would be for and she said an injection. I said what kind of injection.....she said in the back or feet. I told her I would really like to meet and talk with the dr before he started injecting me with anything and she said she would talk to him and call me back on Friday to discuss....I'm like WTH ?

So needless to say I have quite a lot to think about. I have no experience with neuropathy or pain dr's. This sh-- is crazy !

My husband said I really need to think about going back to the first dr that surely they have a sterile room where he would do my nerve block. That dr really seemed to know his stuff and spent a long time with me and my husband discussing this issue.

I'm 51 and very much like you.....SCARED to death for someone to stick a needle in my back.

Guess I was not very much help and I hope you find the info you are looking for from these good people on this site. Please keep us updated.

Debi from Georgia

[Wide-O]

Originally Posted by Ouchiefeet

we have ruled out neuropathy due to low B-12 even though I still have and will remain in treatment the rest of my life.

Not to be rude, but: why? Your B12 level was dangerously low, and as you probably know, it is vital for many many processes in the body.

Once a low level starts to do damage, it is not just a case of taking a couple of injections to make it go away. It can take months and even years before there is noticeable improvement after supplementation, and there might be, I'm sad to say, lasting damage.

As Mrs. D already said: the protocol of one injection a month is a very very bad one. Even assuming that the injections are hydroxocobalamin, and not the pretty "bad quality" cyanocobalamin, it is:

a) not nearly regular enough
b) pointless if you have a problem with methylation

The protocol used to be to start with 4 injections in 10 days, then 2 injections a week until you notice improvement, at which point you can go to once a week and then once a month (which is maintenance). But again, oral methylcobalamin is cheaper and more effective, and I can say this with quite a bit of confidence having tried both methods.

BTW Mrs. D, I keep forgetting to mention: even if you do not have the MTHFR genetic error, things like smoking can cause the same methylation problem, but I guess that's half off topic.

To Ouchiefeet again (funny name though! ): please consider taking the oral methylcobalamin B12 (5mg/day). It is safe, it is cheap, it is convenient, it works.

I know docs do their best and won't intentionally harm, but sometimes they do anger me a bit.

Anyway, do not lose hope, there are still many things to try, including having a good look at your diet. I have likened the pain to "the worst toot ache" myself in the past, but you will find ways out of that hell. But it is really really important to get those B12 levels up (for us it means: > 1000); even if it will not ease the pain, it will prevent further damage.

[Electron]

You have found a good group...I also don't see how they could rule out B-12 deficiency as cause of your PN. You certainly have to get that up. I use Jarrow 1000 mcg methylcobolamin (hold under the tongue) per day, but maybe 5000 would be good for you. What is your diet like? Do you exercise?
Ron

[brookevale]

Hi,

My nerve skin biopsy recently proved what I've known for a year--SFN. I am in constant 24/7 pain mostly in my feet. I am taking Horizant, a new form of gabapentin (tried the others, including Lyrica and had bad reactions). I think it helps a touch. I also use lidocaine patches, which also help a touch. Doctor wanted to apply Qutera prescription capsaicin patches but they are $1500 and I have a prescription max. Next is to consult about a nerve stimulator. I am desperate so I really don't care if wires are sticking in my spine. No doctor will give me pain medication (very hard to get pain meds in New York state unless you are elderly, dying, or in a wheelchair). So, I suffer every day. Life sucks! I am not diabetic, more low sugars than anything. All roads lead to the fact I was given Levaquin and steroids for sepsis last year, aka Fluoroquinolone Toxicity. DO NOT ever take Cipro, Levaquin, or Avelox if you have neuropathy!!!

[mrsD]

Welcome to NeuroTalk:

May I ask where you apply your lidoderm patches? Site location is critical for good response. And often people (and doctors) remain clueless on this point.