Recently diagnosed w/ Small Fiber Neuropathy -- now what?

Idiopathic PN · 05-26-2012, 10:05 PM

Quote:

Originally Posted by mrsD

Adding in RX drugs and a list of supplements may then cloud the issue. It is best to add in one thing at time, and wait a month or so to see if it works. RX drugs do not heal, they only block perception of symptoms.
The other supplements (including the B12) can lead to real healing.

Mrs.D, does the effectiveness of supplements is impede when taken along side the prescribed medicines?

Thanks

mrsD · 05-27-2012, 12:05 AM

Quote:

Originally Posted by Idiopathic PN

Mrs.D, does the effectiveness of supplements is impede when taken along side the prescribed medicines?

Thanks

I don't believe so. But I do think that if there are improvements when you are taking many things, it will be difficult to pin down what is doing what.

In this thread the original poster has a diagnosis of low B12.
That should be attended to first, to see if improvements occur with supplementing it.

For Idiopathic patients with no B12 deficiency then typically they are on some RX medications when they come here. And many times are not getting the relief expected. So adding in some supplements, may help and turn things around. It is easier to
spot these improvements, because they were stalled using what the doctors gave. Each case is somewhat unique, therefore.

People with terrible dietary habits or gluten intolerance, may be low in many things as well (magnesium, antioxidants, B1). And people with mito damage, may need the combos (CoQ-10 +Acetyl carnitine + lipoic acid) for improving mitochondrial functions.

These are examples, of why I tend to ask lots of questions...because the answers may point to a different approach for that poster.

APJH · 05-30-2012, 01:36 PM

Quote:

Originally Posted by mrsD

Think about this:

When starting a new regimen for PN, it can be best to go slowly.

Now you know you are low in B12, so give this a while to work.
It might just fix everything, and you won't need much else.

Adding in RX drugs and a list of supplements may then cloud the issue. It is best to add in one thing at time, and wait a month or so to see if it works. RX drugs do not heal, they only block perception of symptoms.
The other supplements (including the B12) can lead to real healing.

Are you saying I should quit taking the gabapentin and just try the B12 by itself? Or just that I should hold off on switching to Cymbalta or another painkiller? (I've been taking B12 for 5 days now, but I will ask my doc if I can increase from 1000mcg to 5000mcg.)

Thanks!
APJH

mrsD · 05-30-2012, 02:30 PM

If you start the B12 and Cymbalta together, and start to feel better, you won't subjectively know which is doing the job.

But if you are so uncomfortable, and miserable not starting the Cymbalta is only prolonging that.

It will take a month or more on B12 to see if there is any difference.

But I certainly wouldn't add in other supplements with either of these two things, yet.

You are already on gabapentin, and know how much that is working, right? (or not)

Not everyone who comes here has a definite low B12 test result already in hand.
All I am suggesting is that the low B12 when corrected may help alot.

Cymbalta does not work for everyone...and it remains the only antidepressant with potential toxic liver reactions. So considerations about that need to be considered. (benefit vs. risk).

If your gabapentin is working for you, you don't need to change it at this time. But this drug also is not reliable, and new studies show only about 30% of patients find it works for them.

Dr. Smith · 05-27-2012, 12:17 AM

Quote:

Originally Posted by APJH

Thanks so much for your response. I'm going to print out the list of meds you provided and take it to my doc next week. Let's see what he says.

By all means. Just don't be surprised if he scoffs (he may or may not), but he shouldn't have any objections to your trying them. My own experience went something like this:

I got retested and a second opinion at a major medical center (which creatures do tend to be on the conservative side). The PN specialist there, who's supposed to be the best guy in the area, told me there was nothing to do, and gave me a prescription for gabapentin. Having done some homework in advance, I asked him about R-Lipoic Acid & Acetyl L Carnitine (I didn't learn of Pantothenic Acid until later) and his response was, "Well, I've heard they're doing something with that in Europe, but we don't have any studies supporting it here. If the gabapentin doesn't work, I might mention those others to a patient if they want to [try them]." (That's actually pretty close to his exact words.) I don't know if it was just him, or that he's a cog in the AMA/Med school machine, but his response sounded pretty lame to me; Europe isn't exactly Lower Slobbovia. I did manage to talk him into writing the prescription for a lower dose (again, from homework and previous experience).

Some of the more progressive doctors are on board, or getting on board, with these supplements; the more stodgy conservative Citadel dwellers aren't - they're quite frankly behind the times. I have no idea where your doctor may be on this; I hope he's one of the savvy ones.

My current doctor is much more open-minded/progressive, and we have a great rapport/relationship.

Links to studies and other information supporting use of these supplements can be found in the PN Tips, Resources, Supplements & Other Treatments Sub-Forum, in the "Sticky" threads at the top of this forum, or by searching Google and/or WIKIPEDIA.

I have the same philosophy as MrsD's in that:

Quote:

When starting a new regimen for PN, it can be best to go slowly.

Now you know you are low in B12, so give this a while to work.
It might just fix everything, and you won't need much else.

Adding in RX drugs and a list of supplements may then cloud the issue. It is best to add in one thing at time, and wait a month or so to see if it works. RX drugs do not heal, they only block perception of symptoms.
The other supplements (including the B12) can lead to real healing.

I tried B12 first (and I'm still taking it to keep my nerves fed), and after a month I began the R-Lipoic Acid (which worked very well for me). A month later I tried Acetyl l Carnitine, and after learning of it a few months after that, I added the Pantothenic Acid (B5) and had further improvement.

I mentioned the three of them together, and have no reservations about recommending trying them together, because there is so much evidence that they work in conjunction. Seperate or together is up to you.

By use of just supplements, lifestyle changes, and to a lesser extent diet, I've halted the progression of my PN and actually gotten some improvement.
http://neurotalk.psychcentral.com/post880426-220.html

Doc

APJH · 06-03-2012, 06:56 AM

Quote:

Originally Posted by Dr. Smith

Hi APJH, Welcome.

IMO, if the gabapentin is not helping the pain, and causing those kinds of side effects, there doesn't seem to be any upside to continuing it, so ask your doctor to wean you off of it (abrubt cessation is not recommended).

Before trying Cymbalta, you might ask your doctor to indulge you and try:
100 mg. Stabilized R-Lipoic Acid (1/day)
500 mg. Acetyl L Carnitine (2/day, 12 hrs. apart)
100 mg. Pantothenic Acid (1/day)

You can take these with the B-12, which should be on an empty stomach.

Doc

Hi Doc. Thanks for your advice. I did talk to my doctor at length and he thinks, based on my history, symptoms, etc., that Cymbalta will help with both pain and depression. So I've started on 30mg a day, while I wean off the gabapentin (down from 900mg to 600mg so far).

I am taking B-12 daily, as my number was quite low (270), though my doc says I shouldn't take more than 1000mcg for now.

Thanks again for your input.

Be well,
APJH

Dr. Smith · 06-03-2012, 08:37 AM

Quote:

Originally Posted by APJH

Hi Doc. Thanks for your advice. I did talk to my doctor at length and he thinks, based on my history, symptoms, etc., that Cymbalta will help with both pain and depression.

IOW, he scoffed.

I had a professor once who used to say, "If you can't get in the front door, try the back door, or a window." The big question is, does he have any objections to your trying the supplements recommended? If not, wait until the Cymbalta has settled in (I'm not conversant with Cymbalta off the top of my head, so however long that is) and you've established a baseline (normalized how you feel) and try adding in one supplement at a time for a month, then add or try another. Eventually, you'll find what works for you and what doesn't, and hopefully be on the road to improvement, and may be able to wean off the Cymbalta. Cymbalta may treat symptoms, but won't halt or improve the nerve damage.

In the meantime, research Cymbalta (if you haven't already - it can be funky stuff) and keep reading up on what ails you. We have to become our own advocates.

Doc

hopeful · 05-27-2012, 09:17 PM

Quote:

Originally Posted by APJH

Hi everyone. I'm new to this forum; was recently diagnosed with Small Fiber Neuropathy and today found out I tested negative for just about every potential cause (autoimmune diseases, diabetes, HIV, hepatitis, etc.).

It's good news, but I'm very confused, frustrated and anxious.

First off, let me say, my neurologist is fantastic--one of the top in his field at a fine hospital (NYU). He is extremely thorough and I trust his opinion.

I am a 40-yr-old female, in good health, about 20 lbs. overweight, but in reasonably good shape (worked out 3x a week until 2 months ago) and fairly healthy diet (no fast food or soda; lots of veggies, whole grains, lean meat).

A few years ago, I began experiencing numbness, tingling and burning in my feet. In 2011, I finally had an EMG & MRI. Results showed nothing. Then, earlier this year, the tingling and numbness turned to PAIN, so I had another MRI--this time it showed nerve damage & edema in both feet/ankles. Skin biopsies on ankle & hip showed Small Fiber Neuropathy.

I started on 300mg gabapentin in late April, now up to 1200mg. But it doesn't help w/ the pain and it makes me drowsy and foggy. I also have blurred vision, shortness of breath and short-term memory loss. And I feel physically exhausted ALL day (I walk with a cane & take the subway to work each day--lots of stairs!).

Now, my doc suggests I try Cymbalta, but I want to read more about it first. Also, he did say my B12 was slightly low, so I'll start taking 1000mcg a day.

Though I have my share of stress and anxiety, I'm happily married, have a good job, 2 cats and close-knit family. I'm generally a happy person, but after 2 months of pain and limited mobility, I'm sad, listless and indifferent. Part of it is not being able to exercise--that's my stress relief. Also, living in NYC, I'm used to walking EVERYWHERE and I miss it terribly. Now, I'm depressed most of the time. I feel like I'm missing out on everything, but at the same time, I don't want to take part in anything because I can't enjoy it.

I'm also horribly sad and frustrated because, after months of tests, we have not determined any cause for my pain and immobility. I'm overwhelmed by the notion that this pain could just continue indefinitely.

So that's my story. I'm considering acupuncture, homeopathic or dietary remedies (other than B12). I wonder if Cymbalta would help with depression or make it worse? Any advice or suggestions would be helpful!

Thanks for listening and be well...

APJH

Hi, I like all the anwers everyone has given you. Starting with the supplements may be how you want to start. However, I do take Cymbalta. I tried all the anticonvulsants and a few other meds before taking Cymbalta. I have to tell you it was the first thing to help with my pain. Everyone is right, this med will not help to cure your SFN but it may give you some relief. It may even have the extra feature of helping your depression.
I remember how it was in the beginning. I have had this for just about 4 years now. The most important thing to remember is you do get use to it. (I know it sounds crazy). You learn to live with it if you don't allow it to take over your life. Take one day at a time. Remember there are alot of people here that can help.

APJH · 06-18-2012, 02:16 PM

Saw my doctor last week and he told me to be on the lookout for flaky skin or redness on my feet and ankles, where the worst of my neuropathy is.

Since then, I've noticed the skin on my feet has become quite flaky. Does anyone know how this relates to SFN and if I need to do anything about it?

Thanks and be well,
APJH

Dr. Smith · 06-18-2012, 03:38 PM

He may be concerned about RSD/CRPS - or not.

If it were me, I might give him a call and let him know, and ask why he said that.

Doc

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