Small fiber neuropathy
 

Hi, I have joined this group looking for people with same diagnosis that I have just been diagnosed with, small fiber neuropathy.
At this time the neurologists best guess is that it is due to having had gastric bypass surgery seven years ago and now having multiple vitamin deficiencies.
The pain is terrible, burning, aching, stabbing, electrical shocks, in my feet, toes, legs, thighs, knees, ankles and now hands and fingers too.
It's so frustrating to have this pain and still try to work (I do physical therapy in an acute care hospital), I can't take meds because I need a clear head for work. I have been prescribed a ketamine infusion cream from a compounding pharmacy that helps some, but ketamine soaking into blood stream still is giving me side effects of sleepiness and "foggy brain".
This is such a new diagnosis that I'm completely lost and don't know how to deal with this pain and the doctors haven't had much to offer. He had me see a hematologist for IV iron transfusions which I'm still waiting for an appt to do tranfusion. In the mean time do I just keep hurting and hobbling around work?
Fay help or advice would be greatly appreciated, especially any easy home remedies that anyone knows.
Thanks

Hello Sweetstacey.

Welcome to the NeuroTalk Support Groups. :)

We have a busy Peripheral Neuropathy Forum

At the top of the forum there are some "Sticky" information threads with vitamin information and other resources.

There is also the subforum of PN
PN Tips, Resources, Supplements & Other Treatments Forum

There are lots of helpful tips there Stacey.
take care

Welcome Sweetstacy. :Tip-Hat:

If you have been told your neuropathy is from nutrient
Deficiencies Then I would seek out a doctor to give you IV
vitamin and mineral treatments. Bypassing the stomach affects
Many nutrients which require acid for absorption in the intestine.
Some of these IV treatments are called Meyer's cocktails.

Along with iron -- B12, folate, zinc, calcium, magnesium
And maybe copper may be low as well.
Your B12 should be 400pg/ml which is the new lowest
Level.

My b12 is good as i do monthly IM injections to maintain, Vitamin D is another big problem for me as well as the anemia.

Low copper causes anemia, too. You should get that tested.

Monthly B12 doesn't always work for everyone. You should get tested again. Do not test within a week of your shot.

Some people have a genetic error (10-30%) and cannot convert cyanocobalamin to its active form. Are you getting cyano form?
There is a DNA test to show if you have methylation failure.
An MMA will also help show this problem. A low MMA result indicates that the B12 you do have is working. A high result is problematic and suggests you use hydroxocobalamin or methylcobalamin instead. (methyl form is usually obtained from compounding pharmacies).

This is our B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

You cannot assume that doctors are handling B12 therapy properly...some do not. The old lab ranges still do not flag levels as abnormal below 400pg/ml.

Good Morning Sweetstacey :)
 

update
 

I now have a date (this thursday) for an IV iron infusion, which he feels should help a great deal. I did a follow up at a bariatric center yesterday (different then where my surgery was done as i no longer live near there) and they pretty much blew me off, reffered me back to primary care said ill see you in a year.
The neurologists office upset me some as the secretary told me on a call i made for pain medication that my diagnosis was confirmed by punch biopsies results taht came back, GEE THANKS FOR CALLING ME TO LET ME KNOW.

So i will see how i feel after thursday and am truly hoping for relief as i am i at the point where i cannot work anymore. My co-worker thinks my expectations may be too high, you know all my eggs on one basket, i see her point in that anemia is not the only issue, so may not be fixed.

Small Fiber Neuropathy
 

Hi Stacy. You have my sympathy. I was dx'ed with SFN about a year and a half ago. All you symptoms sound very familiar as other will tell you. There is no cure for SFN; just pain management. You have been given excellent advice here already as to having certain vitamins, etc. checked as Vitamin D deficiency will certainly attribute to your symptoms along with the others. I just wanted to say that I started on neurontin (gabapentin) and while it seemed to work, I, too, have been unable to get accustomed to the grogginess, though I am not certain I gave it enough time. I have just switched to Lyrica at a low dose (50 mg) to see if it will work. It has not been as effective as the gaba yet, but I have only been on it for just over a week. Dr. said that I can up my dosage but first have to get used to the 50. All that being said, if you want to try either gaba or Lyrica, try it for at least a month to see if your body can get used to it. Many on these boards have both success and failure with these meds and you won't know until you try. If you are able, give it a try. A warning: Lyrica is tricky for some insurance companies to approve without trying the gaba first. My insurance finally approved it but my co-pay is $25. Not bad, but most of my other meds are free. I wish you the best. Don't give up!

Infusion complete....
 

Infusion done, i feel less fatigued but no change in pain symptoms. it feels like i have hot pokers on the ends of my toes and the ball of my foot feels like an elephant stepped on it every time i walk.
Hopefully with some more time the infusion will make a difference though im not convinced.
I bought 10,000 IU vitamin D3 over the counter yesterday wahooooo and gentle iron capsules.
I may not win this battle but damnit im going down swinging!